tag:blogger.com,1999:blog-11822722763880871162024-03-05T14:56:26.654-08:00A Story of FaithfulnessA love letter to our precious Kate Elisabeth that began after she was diagnosed with Cystic Fibrosis on August 17, 2011 in a moment that changed our lives forever. It's the story of God's faithfulness. It's a love story: God's, mine, and of the people who love us and our sweet Kate.Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-1182272276388087116.post-75851811112769034192013-06-05T22:30:00.000-07:002013-07-18T11:36:39.681-07:00Afflicted With Purpose<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">When Kate screams and writhes during a treatment (only because she wants to go outside like everyone else and swim) and I have to hold her down to do it...that is when I cry about the unfairness of Cystic Fibrosis. It is heartbreaking. I whispered in her ear over and over, "I love you. Good girl. I'M SORRY." I'm sorry for how life is different for you, and you are starting to realize it. Then I realize we are all afflicted in some way, whether life altering or a minor inconvenience. "This is what I've learned about life: it goes on." So, we press on. God's faithfulness never changes, and I will learn to still my momma heart and know that He alone is God.</span><br />
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Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com3tag:blogger.com,1999:blog-1182272276388087116.post-25512372738011153852012-08-17T21:00:00.000-07:002013-07-18T10:48:37.352-07:00The Call<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: white; color: #333333; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">A year ago today we got the call that changed our lives forever: "The results were positive for Cystic Fibrosis." Remembering every detail of that exact moment (smells, weather, sounds, people) ran through my head often today. I mulled over the events of that day today like a timeline. And now, my growing daughter sleeps peacefully in her crib, and she is amazing. My oldest son asked me in th</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">e last week, his voice thick with emotion, if I would choose to cure Kate. Without hesitation, I said "yes." It was easy to answer because I know I don't get that choice. Then he repeated words to me that I know I've spoken over and over, "I don't know if I would, mom. We've grown so much and learned so much." Yes, we have. We have been carried through the last year with so much love and grace. I'm in awe of God's kindnesses to us all the time. I had multiple friends text me today to check in because they knew this could be a hard day. Then peace like a river, attended my way, and I can say it is well with my soul. So tomorrow is a new day, and we fight on for our sweet Kate. Wouldn't trade her or the lessons for anything. </span>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-19638980897478266852012-07-26T11:45:00.003-07:002012-10-01T00:06:56.665-07:00371 daysMy beloved Kate Elisabeth,<br />
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<tr><td class="tr-caption" style="text-align: center;">Often so serious...taking in all the world around you by studying it carefully</td></tr>
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It was just 371 days ago (almost forgot February 29th) that we joyously welcomed you to this world. We had celebrated you and longed to meet you for the 9 months before that and for the years before that we waited and hoped in anticipation for another daughter. I cried when you were born and was filled with brimming over thankfulness for such an amazing gift. <i>It's a girl.</i> Such sweet words filled the operating room that morning at 8:14a.m. Your dad and I rejoiced. You will know your story well, and that is why I document it. There is so much to remember, so much I'm not willing to forget, so much happiness, so much hurt. It all must be remembered to see the beauty in its entirety. And you, my precious girl, are entirely beautiful. All this beauty despite a diagnosis that forever changed our family on August 17; despite little bits of bad news along the way...your life is beautiful.<br />
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<tr><td class="tr-caption" style="text-align: center;">A dolly from Mary Allison</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Your watermelon, cantaloupe, blueberry, strawberry cake. You loved it!</td></tr>
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My mind swirls with the events of the past year and five days. Where to begin to process everything? I guess I can't compartmentalize it all neatly in my mind so that it all makes sense so I continue to walk in trust knowing that the plans planned for you long ago are good. They are. <br />
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You are walking (at almost 11 months), you are saying "Dadda" (your favorite word!), "Mommm", "Hi", "Bye", "Uh-oh", "Done", "Woah." You are so loving and snuggly yet fiercely independent. You like your space. You will tell people when you want it. You give loves by leaning your head on our legs, arms or whatever part is closest to you and say "Ohhhh..." in such a loving, sweet tone. It's definitely an "Ohhhh" of love. You have traveled to Portland five times and to Hawaii one time. We'll pick the Hawaii destination any day, right? You are incredibly adored by your four older brothers and sister. How fortunate are you to have the love of so many within your own family? <br />
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My heart is full of emotion for you, Kate, and I wonder and worry about your future. I also bask in the goodness that God has shown us in the last year. He has protected you on so many occasions when you should have been sick. He has given you a family that will always fight for you and love you, protect you, and advocate for the best care for you. <br />
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This journey ahead of you wasn't chosen but allowed, and I know that as we have learned so much in the last year we will continue to trust the Lord and what he has ahead for you. <br />
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<tr><td class="tr-caption" style="text-align: center;">Enjoying a cantaloupe heart :)</td></tr>
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My admonition to you, Kate:</div>
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<b><span class="contentdescription">Blessed is the man who
perseveres under trial, because when he has stood the test, he will receive the
crown of life that God has promised to those who love him.<span style="mso-spacerun: yes;"> </span></span><span class="sectiontableentry2">James 1:12</span></b></div>
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<span class="sectiontableentry2">And:</span></div>
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<b>In him and through faith in him we may approach God
with freedom and confidence ... I pray that out of his glorious riches he may
strengthen you with power through his Spirit in your inner being, so that
Christ may dwell in your hearts through faith. And I pray that you, being
rooted and established in love, may have power, together with all the saints,
to grasp how wide and long and high and deep is the love of Christ, and to know
this love that surpasses knowledge—that you may be filled to the measure of all
the fullness of God. </b></div>
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<b>Ephesians 3:12, 16-19<o:p></o:p></b></div>
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<span class="sectiontableentry2">What I know I must do for you and your brothers and sister:</span></div>
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<b>One generation shall commend your works to
another, and shall declare your mighty acts. On the glorious splendor of your
majesty, and on your wondrous works, I will meditate. They shall speak of the
might of your awesome deeds, <span style="mso-spacerun: yes;"> </span>and I
will declare your greatness.<span style="mso-spacerun: yes;"> </span>Psalm
145:4-6</b></div>
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Kate, I never want to miss the opportunity to glorify our God through whatever life brings us. Our life has been full, fun, and amazing, and you are part of our story and of a much larger story. <i>I said from the beginning...His faithfulness will be your story. And it is.</i><br />
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<tr><td class="tr-caption" style="text-align: center;">Finishing your Birthday with a little "Peek-a-boo" with brother</td></tr>
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Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com3tag:blogger.com,1999:blog-1182272276388087116.post-57863116754743762412012-06-13T11:36:00.001-07:002012-06-13T13:21:31.855-07:00BreathingDear Kate,<br />
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This is one of those posts that I thought, "Really, is it a big deal?" "Should I take the time to write this down?" Yes. I have encouraged a friend recently to write down her confirmations and victories in regards to her and her husband's decision to homeschool. I must take my own advice sometimes :). It's not a huge thing, but I was reminded of Psalm 145:4:<br />
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Let each generation tell its children of your mighty acts;<br />
<span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-145-4">let them proclaim your power.</span></span></div>
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<span class="indent-1"><span class="text Ps-145-4">That is the entire point of this blog to you, Kate; that I would tell you (the next generation) of God's mighty acts. I will proclaim his power, goodness, faithfulness, and grace to you, and his MERCY! His mercy astounds me. </span></span><br />
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<span class="indent-1"><span class="text Ps-145-4">We started your first round of 56 doses of TOBI <a href="http://www.tobitime.com/info/about-tobi/About-TOBI.jsp" target="_blank">http://www.tobitime.com/info/about-tobi/About-TOBI.jsp</a> this morning, and it started badly. You cried, writhed around, pulled off the mask, pulled out the tubing to the nebulizer. I was sad, frustrated with you, trying to instruct children around me who were needing to finish various jobs...and then I prayed. It still surprises me that sometimes it is the last thing I think of to do. I don't even know what I prayed, but maybe it was something like "Please help. I'm herding cats here, Lord. I'm tired. Be with Kate..." Another minute went by and then I felt a supernatural peace come over me. It was for sure the peace that passes all understanding. Chaos all around me, you were not tolerating your TOBI treatment, and then I felt this calm peace come over me. I know you felt it too, Kate, because then you calmed right down, layed there for a couple minutes, and went to sleep. I cried. Did he really just answer my prayer in such a sweet, easy way? Absolutely.</span></span><br />
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<span class="indent-1"><span class="text Ps-145-4">A friend on Facebook posted this Matt Redman song yesterday, and it was such an encouragement to me. How many days do we go through that we know in our heads that God is with us but it completely misses our hearts? It happens to me often. I know that I know that He is faithful, that He is with us, and that we never walk alone. Sometimes it's just good to hear it again and again and again, and then it sinks deep into our hearts. </span></span><br />
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Scars and struggles on the way </div>
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But with joy our hearts can say </div>
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Never once did we ever walk alone </div>
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Carried by Your constant grace </div>
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Held within Your perfect peace </div>
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Never once, no, we never walk alone </div>
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Never once did we ever walk alone </div>
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Never once did You leave us on our own </div>
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You are faithful, God, You are faithful </div>
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<strong><span style="font-size: large;">Every step we are breathing in Your grace </span></strong></div>
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<strong><span style="font-size: large;">Evermore we'll be breathing out Your praise </span></strong></div>
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<span class="indent-1"><span class="text Ps-145-4">Sweet Kate, our month of TOBI has begun. *sigh. But, I can sit with you and watch you and know that we are not alone. God is with you, Kate. You are breathing in his grace, and we'll always breathe out his praise. Always. In every situation.</span></span><br />
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</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-41006331867611591202012-06-11T00:08:00.000-07:002012-06-11T00:08:37.676-07:00Pseudomonas...againSweet Kate,<br />
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Wasn't it just a few days ago that I was basking in the goodness of all things ;)? All was right in the world...and then it was last Friday. We saw the Cystic Fibrosis doctor here in town (a couple Portland CF docs come down 2x a year to have a clinic here) and I be-bopped in there with you and didn't have a care in the world. I just wanted to know your weight and didn't have any concerns. But, then the little chinks in the armor come, and I have to steel myself against worry and doubt and fear. Apparently your airway culture in February was positive for pseudomonas bacteria again, <a href="http://pseudomonas.com/cystic_fibrosis.jsp" target="_blank">http://pseudomonas.com/cystic_fibrosis.jsp</a> and it slipped through the cracks otherwise known as the busyness of a doctor's office, and we didn't get a phone call. We had not met the doctor from Friday's visit, and his tone and mannerisms were quite serious through the entire visit so I kept trying to gauge whether I should be really concerned or this was simply his way of providing patient care. He re-prescribed TOBI for you to go on for another month, 2x daily through the nebulizer. *sigh. I mentioned that it took two hours a day when we did our first round of TOBI in October, he told me it should only take 10 minutes, and I later called the nurse at OHSU. He told me we only need to give it to you for 20 minutes each time because of your size and age and not to worry about the remaining medication for that dose. Relief! It was a huge bright spot in an otherwise cloudy minded afternoon.<br />
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So, little love, you are as great as ever. We will do TOBI for 30 days and carry on. I am doing a 40-day devotional from Dietrich Bonhoeffer's writings, and I was especially touched by day 9 which *happened* :) to fall on Saturday. One particular passage speaks of the disciples: "Instead, they bear what is laid upon them and what happens to them in discipleship for the sake of Jesus Christ. Finally, disciples will not be weakened by suffering, worn down, and embittered until they are broken. Instead, they bear suffering, by the power of him who supports them. The disciples bear the suffering laid on them only by the power of him who bears all suffering on the cross. As bearers of suffering, they stand in communion with the Crucified." I would not say we are in any way "suffering," but it is helpful to get some perspective when the weight of life's burdens gets heavy on one's shoulders. The burdens and pain are not in vain! <br />
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I had a sweet friend send me a message on Facebook, and God in his kindness had her share this with me: <br />
<div class="content noh" id="id.142703935865994">
Hey Mrs Kelly Wittmers.<br /> I love you.<br /> I am sorry that the air was let out of your sail.<br /> I can imagine but I sure can't know what you are feeling.<br /> I will pray.<br /> I was reminded of Kate....today. I was reading about Jesus healing the man with dropsy....a fluid build up and it made me think of Kate...producing too much of something like this man....and Luke, a doctor by trade, watching Jesus heal this man on the Sabbath day. And Jesus went on to speak about a wedding feast and inviting the poor, crippled, lame and blind.....and the host calling a guest to move to a place of honor. I am thinking that maybe you are this guest. I can see your family....faithfully, with humble hearts....occupying a place along this long table at the wedding feast our Lord has prepared.....and along comes Kate and Jesus pulls out that chair up near the head of the table....up near him, "Shane, Kelly, you and the kids come up here."<br />
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I sat sobbing in the late hours of Friday night not because I feel that we are deserving of any special recognition or that your story, Kate, is not unlike any of those who live in pain, or are trapped in fear, or who bear secret shame. I was just reminded that God knows. He is the All-Knowing One. He is kind, and he knows YOU and wove you together just as he intended for his glory. We will sit at the wedding feast, and I can't wait, and you will be completely free of whatever this short life makes you deal with.<br />
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Pseudomonas, bring it on. This Momma will fight against you, and you have no idea who you're dealing with. The Maker of the universe has my back. Science research is better than ever. Fight on, Kate.</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-50103996265617589292012-06-07T00:28:00.000-07:002012-06-07T00:28:28.906-07:00And Then It Was June...Sweet Little Love,<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Adg8uvqHZSkeZhTzYotN5B-RljpOA3jlzk6F-xzQkLXffCaQ68ef93xIKybxZxpN0YiWP14m1yNTYATZ2EPRxTvQwHc5V3KY2oA90hhphZknpFeA-0tonbxmTUzIpz7Bu_f3OUgizzC_/s1600/IMG_3745.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Adg8uvqHZSkeZhTzYotN5B-RljpOA3jlzk6F-xzQkLXffCaQ68ef93xIKybxZxpN0YiWP14m1yNTYATZ2EPRxTvQwHc5V3KY2oA90hhphZknpFeA-0tonbxmTUzIpz7Bu_f3OUgizzC_/s320/IMG_3745.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and Kate at Poipu Beach--May 2012</td></tr>
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It is June already! Oh my goodness. I am so thankful that aside from an amazing trip to Kauai at the end of April and the Great Strides event we just participated in, there is really nothing to report. Your health so far (with our normal daily routine, of course, of enzymes, vitamins, etc) is so much better than I expected, and I couldn't have imagined you would be doing so well. When I started this blog I anticipated there would be so much more to document that would be negative but part of your life story. It's so surreal, actually, to fathom all the emotions I felt back in August through October in particular and now to be here. Those wounds have healed, my faith has grown, we have been shown more love than I could have imagined and in so many ways. <br />
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<tr><td class="tr-caption" style="text-align: center;">10 months old!</td></tr>
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We will see the Cystic Fibrosis Clinic doctor on Friday here in town. You haven't been seen in Portland since February although we've seen our local pediatrician for your 9 month check up. I am anxious to see your weight and growth charts.<br />
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We participated in our first Great Strides event last Saturday with many family and friends walking with us in support of Cure for Kate. It was a great morning. We raised over $4500 for the Cystic Fibrosis Foundation, and I'm so excited and happy about that. It felt good to be a part of something much larger; a common purpose for all those in some way affected by Cystic Fibrosis.<br />
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<tr><td class="tr-caption" style="text-align: center;">We will always fight for you, Kate!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWKUzy1jZJ6iD_mCxX3xdZAwsIuJneiJWkfywID1MimtReXPK2vi41OEXjoTiZATQj0vXYV947dmNcyoobuAHmlLt-9Wm_e8LEo7bW5XLPPvuR9W9wa3WpBNFOoGidmWSzhcTJtGD7ltW3/s1600/IMG_2387.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWKUzy1jZJ6iD_mCxX3xdZAwsIuJneiJWkfywID1MimtReXPK2vi41OEXjoTiZATQj0vXYV947dmNcyoobuAHmlLt-9Wm_e8LEo7bW5XLPPvuR9W9wa3WpBNFOoGidmWSzhcTJtGD7ltW3/s320/IMG_2387.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy loves you so much</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3hEMfTLuzXJao8KkgPopeRsGrvCIWReuuN62KXCbggUuIzviM6oG-1pw42bfIr91y2Cya1mXkKOh8JoN-Q5fOMIFpb9NbCzCRc90h2c-OJcwjxAyZ0QT_V67Gnia6TaOoVkF6zBnJssb/s1600/IMG_2384.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA3hEMfTLuzXJao8KkgPopeRsGrvCIWReuuN62KXCbggUuIzviM6oG-1pw42bfIr91y2Cya1mXkKOh8JoN-Q5fOMIFpb9NbCzCRc90h2c-OJcwjxAyZ0QT_V67Gnia6TaOoVkF6zBnJssb/s320/IMG_2384.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our amazing team for the Great Strides event</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXGK1XmcAGnq-QHyWzfcM1rYXLoW2eBYObSxkbT7IoehNKR8Qe4Nu2a-D8MF8ZmSElDbRdVH1fD2-G6C31Hrdq8PJrcgKVp8FQ4UMBqZuhFXavKZn0GW58iTXcEjCWVbdGioqiek45t1K4/s1600/IMG_2390.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXGK1XmcAGnq-QHyWzfcM1rYXLoW2eBYObSxkbT7IoehNKR8Qe4Nu2a-D8MF8ZmSElDbRdVH1fD2-G6C31Hrdq8PJrcgKVp8FQ4UMBqZuhFXavKZn0GW58iTXcEjCWVbdGioqiek45t1K4/s320/IMG_2390.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So close to walking!<br />
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I love you so, so much, Kate. You are so much fun, you love your brothers and sister (and they LOVE you!), you are so close to walking, you are so determined, spunky, vocal, and you may be my biggest training challenge yet :). You took one to three steps multiple times on Sunday and have walked a little bit each day since. I'm so proud of you, Kate! </div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-9780271516678276292012-03-17T15:28:00.000-07:002012-03-17T16:08:22.072-07:00Bloom and BlossomMy dear Kate,<br />
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You are quickly approaching 8 months old, and you are doing so well. I cry every time I think about it; every time I take the time to quiet myself and acknowledge how kind the Lord has been to you and to us. I know that we have not been "lucky" but the recipients of a great kindness, an extreme mercy, an overflowing goodness. Why do children get sick? Why is there suffering in the world? Why? Why? If God is so good and so full of love, then why? WHY NOT? We have claimed from the beginning of time that we know better, that we can make our own choices, that we are better off on our own, and God in his kindness has allowed humanity to experience the devastation that sin brings to show us that we belong to him, that this world without him is dying, and then he ultimately sent his son as the ransom for us. Because of sin death will come for all of us, but in between our birth and death there are moments of pure bliss (we don't deserve those either!) and pure devastation. Tim Keller says, "Jesus suffered, not that we might not suffer, but that when we suffer, we can become like him." <br />
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We have experienced both in the past 8 months, beginning with the bliss of your sweet birth. It was the first time I have cried during a delivery, and I remember just mouthing "...thank you, thank you, thank you" to my Jesus when I heard you were a girl. I was overcome with thankfulness. My Savior knew even then that the devastation would come for us less than a month later, and he knew it would hurt. He was not removed from that hurt; he didn't NOT care. He cared so much. I know that I know that he suffered and died for all sin, and death did not have any victory over him or us under the new covenant of his blood. So, Cystic Fibrosis <em>does not have victory over you</em> whether you are healthy or not. Our life is a vapor, Kate, and we will be home with God someday. "Yet you do not know what tomorrow will bring. What is your life? For you are a mist
that appears for a little time and then vanishes. Instead you ought to
say, 'If the Lord wills, we will live and do this or that.'” James 4:14-15<br />
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I know your story has been so beautiful so far but we are still so close to the beginning. Doubt sets in at times, and it catches me in the throat to think that your breathing may not always be so peaceful. Your lungs may not always allow fresh air to pass in and out with such grace and calmness. You may fight pseudomonas bacteria again, and I'm sure that you will. But, but, but, look at you right now! <br />
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<tr><td class="tr-caption" style="text-align: center;">Missing one from the crew. You are loved, Kate.</td></tr>
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I took you in last week to see our beloved pediatrician, and you are over 17 pounds, your lungs remain clear, your oxygen levels are perfect, and you are my most determined child so far. In the last month you have started crawling, standing at furniture, and climbing stairs! You also got your first little tooth on the bottom right, and that left one is ***this*** close to coming through. You say "dadadadada..." through your days, and you love to talk in a loud voice! :) You are eating avocado, yams, pears, bananas, peaches, chicken, etc. with lots of coconut oil and other goodness mixed in. Your appetite remains good, and people who ask about you marvel and say "You'd never know there was anything wrong." Yes, and it is only a glory to my Jesus. Let me always be so clear that I praise him no matter what. In these days, though, I am especially thankful that my family is well, that we are at the end of the healthiest winter we've ever had, that even when your brothers or sister get sniffles or coughs, you have stayed well in 2012. Thankful for you and about you, my beloved Kate Elisabeth. You have bloomed into a beautiful baby girl who is gaining weight and growing well, and you're blossoming into a testimony of such goodness that only comes from above. Always praise him, Kate, even when the storms come. I love you, sweet girl.<br />
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<tr><td class="tr-caption" style="text-align: center;">March 6, 2012</td></tr>
</tbody></table>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com3tag:blogger.com,1999:blog-1182272276388087116.post-7746782378431714542012-02-26T22:47:00.000-08:002012-10-01T00:06:41.648-07:00Leaving Winter<div class="separator" style="clear: both; text-align: center;">
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Our precious Kate with her biggest brother who adores her</div>
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***I wrote this in January, and time has a way of passing as do the days and weeks with it. Sometimes emotions linger, as these have. Sometimes things are a gradual passing, as winter is.***<br />
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I was driving in the sunshine a week or so ago, thinking about this little blog, hoping to create a legacy of God's goodness in writing for Kate, and pondering the heaviness in my soul. I wasn't really understanding it at all. It made no sense. Compared with our circumstances of the last six months I should have been filled with glee or at least some sense of gladness that those days have passed. I was driving Ben to his last orthopedic appointment for his arm. All is well. Another x-ray in 6 months to make sure the healing has progressed despite some angulation of his radius. Sarah had just had her last appointment for her spiral tibia fracture the day before that. She will be swollen and limp for quite some time as the bone and muscles must strengthen, but she is healed. All is well.<br />
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<i>But yet it isn't. My soul is heavy. Burdened. Too many layers of clothes on a warm spring day. Overdressed. Heavy. </i><br />
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I have felt at the end of a long, winding, adrenaline-rushing roller coaster. Roller coasters produce excitement, heart-pumping, wind-in-your-face giddiness and fear. Once it gets going you hang on and hold on until the ride comes to a stop. There's no getting off after it starts. These last 180 days or so have left me at the end of one of life's roller coasters. God-ordained, God-planned, God-allowed. The ups and downs experienced in those days seem to have settled for now. And yet the peace that passes understanding of those days seems to have given way to burden in my soul. Don't get me wrong. I'm not walking around in a general funk. I will smile at you and engage in your life and be sincerely happy for all that is going on around me that is good and happy and wonderful. It's that deep inner space in me that seems a little cloudy.<br />
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<i>The car is warm, the sun is shining glorious, life is good, bones are healed, daughter is thriving, and yet it feels like winter in my soul. Grey. Barren. Cold. Desolate. </i><br />
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Then, as always, I heard him. <i>Leave winter.</i> He takes us through the winter to give us rest; to dig our roots down deep in Him despite the darkness, grey, wet, heaviness. He brings the seasons for growth, variety, color, harvest, bloom, rest. When the winter days are dark, cold, wet, and barren, he doesn't leave us. Spring is just around the corner, even on the darkest day. Looking outside on a winter day makes one forget the beauty of spring. It was so many seasons ago. Creation is always preparing for the next season. Winter's dreariness makes way for spring's splendor. The smallest signs of life appear. Bulbs get ready to burst forth in colors many and varied. Trees rest and prepare for their crowns of leaves. Grasses prepare to come alive in all shades of green. All looks dead, but life is getting ready to reveal itself in glory. <br />
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I am getting ready to leave winter. I won't stay in this heaviness. I will lift up my eyes to the hills because my help comes from him. I know God is with me and teaching me through yet another lesson. I will shed this heavy coat and put my face to the sun because it is His gift. All of it. The winter. The dark days. They are only the prelude to the light. <br />
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***Present day: John Piper posted a quote on Facebook a few weeks ago that spoke clearly to me about the winter season in my soul. "<span class="messageBody" data-ft="{"type":3}">Dear happy young people, prepare for deep loss and long sadness by feeding a kind of joy that thrives in winter." Ah, so the joys of life that are like the bloom of spring, the sun of summer and the golden of autumn must be the preparation and cultivation of a deep joy that must be able to thrive in life's winter. </span><br />
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<span class="messageBody" data-ft="{"type":3}"> I sat today in my room and started to look through the box of cards that we have received since sweet Kate arrived in our family. The tears were controlled, but the emotions were heavy as I relived each moment and word and timing of each note of congratulations, sympathy, encouragement, compassion and love. The roller coaster! I could feel it and how I just held on to my Savior through that time because there was nothing else but hanging on to the one who has always held me and who fashioned Kate and holds onto her with such mercy and kindness. There are daily so many lessons of who He is, and I feel I have been granted a sacred p</span><span class="messageBody" data-ft="{"type":3}">rivilege to be a part of Kate's great story through these months. God allowed a beautiful daughter to be born in the heart of summer, with sun hot and my other babies golden. He almost immediately led us into the fall of a new life we didn't dream of and we stumbled, picked ourselves up and made our way through. And now winter is passing. Spring is coming, and I will be ready for new growth, new lessons, new trials. Lord, make me ready.</span><br />
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The most beautiful gifts I've ever received</div>
Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com2tag:blogger.com,1999:blog-1182272276388087116.post-79962537054226722122012-01-22T23:19:00.000-08:002012-01-22T23:19:53.162-08:00The SparrowMy dear Kate,<br />
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It is a joy to tell you that I don't have much to share about your health because you are PERFECT. It is so often that things get quiet in the car, in the house, or when I steal away to the laundry room (no one likes to go in there...it involves work!) that I am brought to tears by God's kindness to you. You are a baby filled with joy, and when I look in your eyes I'm so thankful you have no idea that you have a chart in Portland at a Cystic Fibrosis clinic or that you have been eating gravel (pancreatic enzymes) since you were four weeks old. Life just goes from one smile to another for you. You bring us all so much joy. You ate your first avocado yesterday (six months old!!) with coconut oil and salt (needed for CF patients) and you gobbled it up! You knew exactly what to do with real food because you've been eating enzymes since August! It was fun to watch you keep opening your mouth like a sweet little bird for more, more, more. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmOeNKOyGVO6eQMIi8-3g2cWYhcVjFUT2mJY7YY9r-rFQGO65kejgztD7QHDArQtFeohgEDRm95JbKmSLA2ilhPTo0QluBTeoygiTwzcfgTtB2Jm_rsKbUNN-SkE7v9lLAG4Zcg2b8xtqt/s1600/IMG_2540.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmOeNKOyGVO6eQMIi8-3g2cWYhcVjFUT2mJY7YY9r-rFQGO65kejgztD7QHDArQtFeohgEDRm95JbKmSLA2ilhPTo0QluBTeoygiTwzcfgTtB2Jm_rsKbUNN-SkE7v9lLAG4Zcg2b8xtqt/s400/IMG_2540.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly picture with Mommy after a bath. 5 months old</td></tr>
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I was perusing Pinterest last night for ideas for decorating the room you and Sarah share. It was fun to look and dream as if I had all the time and money in the world. I kept running across a photograph of a room someone had done where they had put vinyl lettering on the walls. One wall over the crib had "His eye is on the sparrow" and on another wall they had a tree and above it the words "and I know he watches me." I looked up the lyrics because I hadn't seen them or heard the song in so long and was brought to tears. He. Is. Faithful. Am I getting redundant? I don't ever for one minute, Kate, want you to doubt it and what it means. I think I am still trying to grasp it myself! It means he is close. He is real. He is present. He watches over you. I know he does! I see it in how well you are. Even if you weren't, it doesn't change HIM. I love him, and he's been so kind! He sees the sparrow and knows it. That little sparrow never wonders or worries about home or shelter or life. Jesus is our portion, and that is the treasure. It is the hope during the most difficult days of being a mom to five precious lives. It is the most difficult, draining, challenging work I've ever done, and I fail every single day. But, God doesn't. He gives grace and mercy when I really don't want to. Why do I feel the need for my own justice when all he's ever given us is free, unmerited favor? <br />
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His Eye is on the Sparrow</div>
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<strong>Why</strong> should I feel discouraged, </div>
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<strong>Why</strong> should the shadows come,
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<strong>Why</strong> should my heart be lonely, and long for heav’n and home,
<strong>when Jesus is my portion? </strong></div>
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<strong>My constant Friend is He:
His eye is on the sparrow, and I know He watches me;</strong>
His eye is on the sparrow, and I know He watches me. Refrain:
I sing because I’m happy, I sing because I’m free,
For His eye is on the sparrow, and I know He watches me.
<strong>“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;</strong>
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
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God loves you, Kate Elisabeth. </div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-48890192868220197122011-12-23T16:59:00.000-08:002012-01-03T22:33:53.983-08:00LearnedMy dear daughter, Kate,<br />
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This has been one of the most challenging, beautiful years of my life, and I know I speak for your Daddy as well. We have enjoyed 17 years of marital bliss. He is the best choice I ever made in my life. I am always in awe of how kind the Lord was in my youth to let me marry a man who would so many years later still love me and our family so well; who would always strive to be the best he could be for us. I'm so thankful. That being said, neither of us could have ever imagined a day like August 17th. We could never have seen this coming, especially with four Cystic Fibrosis-free children born before you. It has taught us so much.<br />
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Kate Elisabeth 5 months old</div>
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I've been mulling over all the Lord has taught me or that I have realized since your birth. This time in our lives will always be so bittersweet for me. The year 2011 brought the dream realized of another precious daughter, and with the gift of you also brought the then devastating news of your Cystic Fibrosis. I say "then" because my heart is filled with peace today. I am running a race here on earth, Kate, as are you, and we are not yet at the finish. I will continually have to choose to throw off the weight of the unknown parts of your future (which would hinder me) and run with perseverance this race marked out for us. <br />
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<strong><sup><span style="font-size: x-small;">1</span></sup> Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, <sup class="versenum" id="en-NIV-30215">2</sup> fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. <sup class="versenum" id="en-NIV-30216">3</sup> Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3</strong><br />
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In all these thoughts swirling in my head, I have tried to jot them down along the way over the last few weeks. God has been so good to us. I will forever proclaim his goodness and faithfulness to us in every moment. I have never felt more secure in my faith, Kate, and I will never stop telling you of his faithfulness. <br />
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<strong>My people, hear my teaching; listen to the words of my mouth. <sup class="versenum" id="en-NIV-15116">2</sup> I will open my mouth with a parable; I will utter hidden things, things from of old—<sup class="versenum" id="en-NIV-15117">3</sup> things we have heard and known, <br /> things our ancestors have told us. <sup class="versenum" id="en-NIV-15118">4</sup> We will not hide them from their descendants; we will tell the next generation the praiseworthy deeds of the LORD, his power, and the wonders he has done. <sup class="versenum" id="en-NIV-15119">5</sup> He decreed statutes for Jacob and established the law in Israel, which he commanded our ancestors to teach their children, <sup><span style="font-size: x-small;">6</span></sup> so the next generation would know them, even the children yet to be born, and they in turn would tell their children. <sup class="versenum" id="en-NIV-15121">7</sup> Then they would put their trust in God and would not forget his deeds but would keep his commands. Psalm 78:1-7</strong><br />
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What your Mama has learned in recent months:<br />
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1. Life is a surprise; the kind of party that caught her off guard when she least expected it.<br />
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2. People are amazing. They have loved us in better ways than we could possibly imagine when we felt the bottom fall out of our lives.<br />
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3. God's faithfulness surprises her; day in, day out.<br />
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4. Joy IS found in suffering.<br />
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5. She can rise to the challenge when the Lord allows pain in her life that changes it forever. It is not of her own doing! It is the realization that her dependence on Christ is where she is fully satisfied, not crippled.<br />
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6. Everyone's life is a beautiful gift. We lie to ourselves and go against what God says when we think that a child isn't a blessing because of the parent's ages, circumstances or financial ability or if the child is not perfect and could have been terminated given the right prenatal tests. God alone opens and closes the womb (Hannah, anyone?) and we prove ourselves ignorant and humanistic when we decide whose life is worthy of our celebration.<br />
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7. Jesus is the gift; he is the treasure. Give me Jesus! This world is temporary and worth holding onto very lightly. Eternity with my Savior is what I long for. The coolest jeans or hair? That's fun, but so here-and-now. The treasure? It's worth my time and my heart. All mysteries will be revealed, the eternal death of sin, no tears, no pit-in-your-stomach pain. Bliss with the Author of all joy: YES.<br />
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8. Life changes. People who were fixtures in her life will sometimes go, and the Lord will bring people into her life to love, teach, pray for, encourage, and refine as an extension of Himself.<br />
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9. Life submitted to Christ is sanctifying and beautiful, not boring and restrictive.<br />
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10. My most precious Kate Elisabeth, your life and circumstances have taught me more than I've learned at any other point in my life about what is true, what is important, and what is eternal. I will be thankful forever for that.<br />
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I can't wait for you to start a list of what you've learned and what you're learning. It will be a precious list of his faithfulness to you and your joy in him. Merry first Christmas to you, Kate. You are so loved and well loved. <br />
<strong><br /></strong>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-67996725417460457482011-12-01T15:52:00.001-08:002012-07-29T00:12:27.853-07:00Delta F508Dear sweet Kate,<br />
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You had a four month check up with our local pediatrician on Tuesday and she had the results of your genetic testing. Your Dad and I gave you one copy each of the same mutated gene so your mutation is double Delta F508. Your brothers and sister each got two healthy copies. Each of them, unbeknownst to us at the time, had a 1 in 4 chance of having CF for the same reasons you do. It's so complicated to explain so I'd encourage anyone reading this to Google it for yourself and sift through the information. For you, Kate, it simply means we know what type you have so that as treatments progress we'll know what you will be eligible for. It's funny that I had so much peace and saw the words immediately amidst a slew of information on the test results. God continues to cover me with so.much.peace. about you. It could be that you are doing SO WELL that I still live in a state of denial. You have had no respiratory issues at all so far, and we have been compliant with your treatments. You weighed 13# 1.9oz on Tuesday, and I'm just thrilled. You are thriving, cooing, rolling over, laughing, and being just generally perfect. You bring us all so much joy! <br />
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As we head into the Christmas season I think of what Mary might have felt as she anticipated Jesus' birth. I shared at church on November 20th that a year prior I had been so discouraged and was not sure we would be able to have another child. It wasn't happening in my timing, for sure. That evening I had taken an early pregnancy test, and there was the first sign that you were with us! I was shocked and so happy. I had no idea how much our lives would change within a year. I can only imagine how Mary felt carrying the long awaited Messiah. She had no idea how life would change for her after his birth. I can relate to those feelings. The birth of any child is life-changing, but your birth and subsequent four months have brought the greatest truths, joys, sorrows and lessons to the forefront of our lives. <br />
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I was so grateful to be able to pray with thankfulness for you and your brothers and sister at Thanksgiving. You have brought so much delight with your sweet smiles and how people have loved us through the hard days. I stand in awe of the Lord's goodness. I am excited about this Christmas season and am so thankful for the promises God had made to send a Savior that were fulfilled in a humble stable so long ago. The world changed forever in the moment of Jesus' birth, and my world is forever changed by yours, dear Kate.Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com2tag:blogger.com,1999:blog-1182272276388087116.post-1453161716685106732011-11-15T22:42:00.001-08:002011-11-15T22:57:35.987-08:00Genetic TestingI took you in to have your blood drawn today to be tested for the specific two mutations that caused your Cystic Fibrosis. We were told by the doctor yesterday that they almost always find both mutations but not always. Because your Dad and I both carried a healthy gene and a mutated gene and because you got both bad genes, you have two mutations. They may be the same or could be two different ones. We will find out in about a month which type you have. At this point it doesn't really matter. But, there are some promising drugs on the horizon for some small percentages of people with CF that look to treat the cause of CF instead of the symptoms. Up until this point the progress of science research has been able to identify triggers and problems related to this disease and take a proactive stance against lung damage and digestive issues. For you this means twice daily Albuterol treatments and digestive enzymes every time you eat. You have had no respiratory issues at all yet so the Albuterol is just on board for the "if and when." The enzymes are clearly needed, and your dose was increased slightly yesterday because of your increase in weight (yay!) and stooling patterns. It was clear to me in the last 10 days that something needed to be adjusted. All the while you smile, coo and talk. You are so full of peace and joy! <br />
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I am anxious to know which CF group to put you in, figuratively. We know that 70% of people with CF have the Delta F508 mutation as their primary mutation so we are expecting that as at least one of the them. Here's a basic rundown of the majority of people with CF:<br />
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At this point, there is no fear involved. The denial of this disease in our lives has passed. It has settled in for the long haul. Today is the only thing I can manage so I'll let God take care of the rest. I'm so happy I don't know the whole story, but he does. We're just so very thankful for you, sweet Kate.</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-84635710080567500942011-11-14T22:20:00.001-08:002011-11-14T22:38:45.019-08:00Oh his goodness!Sweet baby, <br />
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Today was a good day. I feel so much peace in my soul tonight, and I'm thankful. We went to OHSU today, and I had prepared myself for whatever might come our way. I wasn't sure of a few things, knew of a few, and waited for anything. Instead, your weight is amazing, and your weight to length ratio is now at the 65th percentile!!! You were 12#6.8 ounces today. Those sweet rolls on your thighs, at your wrists, the dimples in your fingers just make me ooze sappiness. You make me so happy, Kate! You talked, talked, talked to everything in the room while we waited and then you had quite a conversation with the medical assistant. She thought you were pretty amazing, too. :) Because you are doing so well we get to skip our December appointment and don't have to go back until the end of January! Yippee! The doctor did another airway culture to see if the bacteria pseudomonas is present in your airway. He said he would be surprised if it was present because it is usually eradicated in your age group. I am hopeful, but if it's there we will start TOBI again. Even that just doesn't scare me. Victory!<br />
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I so enjoyed this trip. Coffee on the way out of town, four hours of being with your Dad in the car (always my favorite!), Trader Joe's, a great, quick appointment for you and another four hours driving home visiting with your Dad. The rest of the monkeys met us at the door when we got home, and we went from blissful quiet in the car with you talking and us listening to Mark Driscoll to the busyness that is our very real life. It's a happy life, Kate, even with health issues, broken arms and broken legs. We are so fun, right? Thanks, Lord, that any good in my life is because of your goodness and grace. I'm so thankful to call you my Savior because when it rains I will praise you, and when life just feels peaceful I'm so happy to say that it's not to me, but to your name be the glory. Thank you for your kindness today, Jesus. <br />
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May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-10626406620347783852011-11-04T22:07:00.000-07:002011-11-04T22:07:40.793-07:00Big Girl PantiesSweet baby,<br />
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As irony would have it, you are still in diapers for a couple more years, but I want to share a bit of wisdom with you for down the road. Here it is: when life is hard, when it feels all roller-coastery or like the Tower of Terror (which you will never hear I have been on because I will never go on it...) you will have to put on your big girl panties and be bigger than you want to be. You may have to be nicer than you want, more brave than you want, more gracious than you want to be, but you'll have to do it. You'll have to tell yourself, "Self, life is hard. A lot. Continuously at times. But gosh darn it, get on with it!" During one day my life can feel joyful, happy, peaceful, and then with one bit of <em>life</em> it can get all cattywampus in my head. Yes, I choose to laugh, pray, drink coffee, etc. but there is often a battle raging within me to be a big girl when I'd really rather go to bed, cry, still drink coffee and say curse words in my head to the people who bug me. I digress. Life is sticky, Kate. The good stuff sticks and so does the bad, but you have to learn what to keep and what to wash off. Keep these things: <br />
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Finally, brothers, whatever is true, whatever is noble, whatever is right,
whatever is pure, whatever is lovely, whatever is admirable--if anything is
excellent or praiseworthy--think about such things. Philippians 4:8</div>
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Whether it's Cystic Fibrosis that bugs you, or maybe people or just rotten circumstances, I will be there to cheer you on and encourage you. I pray that the Lord will give you friends that I've had in the past and that God is putting in my life now who encourage and pray and love. They're the ones who will be there for you no matter what. And when that day comes when it all feels hard, they'll tell you to put on your big girl panties, and you will, and you'll get on with it. </div>
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</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-80060234407949637692011-11-02T21:09:00.000-07:002011-11-02T21:09:04.803-07:00LaughingWell, these last two weeks have been comical (??) and we're going to stick with that perspective! On Thursday afternoon, October 20, your brother Ben broke his arm while playing on an extra mattress with your brothers. It's one of those moments that I knew was coming. Doesn't every mother want to be the fun mom? I do. It's just a mattress; they just want to play and have fun. It's unfortunate that I had been telling them all day that I.DO.NOT.WANT.TO.GO.TO.THE.HOSPITAL.TODAY. I'm pretty sure I talked in all caps each time I said it. I even walked out of the room after warning them yet again to be careful and said <em>out loud to myself: </em>"famous last words." Yep. I sealed the deal right there. Must have been less than two hours later I was having a complete hysterical melt down as I saw Ben's arm and screamed at everyone to get in the car because <strong><em>his.arm.is.BROKEN. </em></strong>It's not a moment where I passed any kind of spiritual test or became a nominee for mother-of-the-year. Nope. Lost every marble in that moment of seeing Ben's deformed arm. I couldn't get ahold of your Dad. I was feeling frantic. <br />
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We drove like mad people down our road. <em>I say this as if anyone was driving but me. </em>We went to the Peds office. One look at the arm and we were sent to Radiology with xray orders. Ben handled the xrays like a champ and we were back at the Peds office with confirmation that not one but both of his forearm bones were broken. Awwww. Good times. We were told to go to the ER where one of the Ortho staff was already fixing someone else and we would be seen by them. Ben would be sedated, arm would be reset and casted. At this point friends had swooped in to pick up children, and we had even run into friends *by chance* in the Peds parking lot. They hugged and prayed for us right then and there. The Lord's providence just astounds me at every turn. Off we went to the ER where Ben amazed me with his complete calm demeanor through every part. Thanking Apple for the ability for Ben to watch Dora or Diego on Daddy's phone. It saved the day and provided the perfect distraction while we were waiting. All the staff was assembled, everything was explained, sedation was gone over, and then we began. Ben looked at Shane while Shane held his face from seeing the IV go in. Ben watched Shane, got big crocodile tears at one point but never let out a sound. I'm in awe of this boy. The sedation took effect, I was sent out of the room with you while they used a mobile xray machine as they reset the angulated radius (the ulna was also broken) and then began casting. It all happened so fast, and then Ben was left to come out of sedation. He was looped out of his mind and so funny to watch. He went off for another xray with the cast on, all looked good, we waited for another 1/2 hour to 45 minutes for the sedation to wear off completely and home we went to pick up children from various friends' houses. He has done so well and the cast has not stopped him from doing everything he always does.<br />
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Fast forward eight days. Sarah was at a birthday party at a rollerskating rink. I was having my hair done in a blissful two hours of quiet and adult conversation. I got a call from Shane just as I was paying and getting ready to leave. "Sarah fell and thinks she broke her leg." I just started laughing. "Really?" That was about all I could get out. The battle in my mind was between "no way" and "well, everything else keeps turning out differently than I thought, so..." Off we went to the Peds office again and ended up following Shane into the Peds parking lot. Sarah was in the back of a van that belongs to the grandma of the boy whose party the kids were at with Shane holding her leg up and trying to console her. Not to be that night. Our favorite pediatrician came out to see her in the van, gave us xray orders and we headed back over to the hospital. Deja vu? Yep. Of the most surreal kind. Our pediatrician told me to call the back line as soon as Sarah's xray was done. As soon as I called I got the "well..." I'm really not a fan of conversations that start that way... "...she has a nasty spiral fracture of her tibia." "Really?" That was about all I could get out again. In the meantime, Sarah was in extreme pain and Shane had to keep her leg elevated at all times. He now has a hunchback...I digress. We ended up back at the Peds office where our pediatrician splinted her leg (Friday) and told us she had to be seen at Ortho on Monday for a cast. It couldn't be casted right away due to swelling that is normal for this type of fracture. Shane went to the nearest pharmacy to pick up pain medication, Ryan and I assisted Dr. S. with splinting Sarah's leg while you laid on a blanket on the ground. <br />
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We somehow made it home through lots of tears and agony on Sarah's part while she was as flat as possible in the backseat with pillows propping her leg up. That night was so long. None of us got to bed until midnight and then we were up every 1/2 hour to an hour trying to help Sarah. The narcotic for her pain wasn't working at all. We ended up getting a different medication on Saturday and started augmenting with Motrin and at least her pain was mostly tolerable by Saturday afternoon. Word got around and friends started bringing meals, presents for Sarah, and as always, lots of love. We got Sarah into a long leg purple cast Monday afternoon at the Ortho office, and each minute is an improvement. We still haven't had a decent night's sleep due to pain and needing to change positions, but her pain is under control at least. Really, that's about all that's under control! I have laughed in my mind so much at how out of control life feels right now, and yet I have so.much.peace. How is that possible? I know because I am known. The Lord continues to stretch us, and it has not felt good, but now we are laughing at the absurdness of thinking we ever have any control over anything anyway! <br />
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So, we now have two kids in casts along with trying to continue with homeschooling and daily treatments for you, Kate, and life in general. Lord, let us keep laughing. We will keep trusting you. You have never failed us! No more, Lord, thank you! Plate's full for now.Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com2tag:blogger.com,1999:blog-1182272276388087116.post-33176869802438024782011-10-23T23:51:00.000-07:002011-10-24T00:10:02.368-07:00Beauty From AshesSweet Kate,<br />
<br />
Your Daddy texted me Monday afternoon saying he was going to try to take Tuesday afternoon off so we could run up to Crater Lake for the afternoon. The weather was beautiful here Tuesday and we surprised all of you by Daddy arriving home right after lunch, us directing everyone to grab shoes, pants and a sweatshirt, then we loaded the car with snacks and off we went. It wasn't until about 15 minutes before we got to Crater Lake that your big brother finally guessed where we were going. We're nothing if not always surprising the kids with various outings :). So fun. Well, as your Dad predicted, the weather was so, so beautiful! It was clear, sunny, warm, and there were only a handful of people at Rim Village. Perfect! We spent a few hours surveying the scene that is Crater Lake. We read signs, watched videos, took pictures, ran around, climbed rocks, and enjoyed each other's company. It wasn't until we got home that night and the house was quiet that the Lord reminded me of how much beauty comes from ashes. We got to see it at Crater Lake. It was such a perfect reminder of what exquisite beauty can come from complete destruction. I'm sure if we had been able to view the scene after the series of volcanic eruptions thousands of years ago it would have looked hopeless. Destruction, fire, ash and mess everywhere. But just as a forest rejuvenates over time after a fire, Crater Lake was born in beauty from fire and ashes.<br />
<br />
Kate, the Lord has given you what many would call "ashes." You have a disease scary and unpredictable. And yet, my dear daughter, your life is BEAUTY. Your life has brought<b><i> so.much.joy</i></b> and so many people have poured into our lives encouragement, prayers, and love of every kind because of what the Lord has allowed for you. That is beauty of the most real kind. That love is genuine and so beautiful. It is the kind that sacrifices, gives, and works for the good of another. We have been the recipient of more beauty than we could imagine. It is breathtaking in the images of so many dear people who play like a reminder through my head of Christ's love for us. I have printed email after email of encouragement that has come to us since August 17. I want you to see the beauty. I have saved every card, every encouraging note, every verse sent to us. I want you to see the beauty from what the world would call ashes. Kate, as you get older there is so much I will share with you about what real beauty is. It is not self-absorbed. It is not consumed with self. It is not sitting back while others give. Love gives. Love serves. Love encourages. Love sacrifices. A sweet friend made a schedule for us of your daily routine, and at the bottom is John 15:13:<br />
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<b>Greater love has no one than this,<sup class="xref" value="(<a href="#cen-ESV-26701B" title="See cross-reference B">B</a>)"></sup> that someone lay down his life for his friends.</b><br />
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That, my dear, is beauty. We have experienced that beauty! That is made more beautiful when circumstances look like ashes. All of us experience ash in our lives. Life can be painful, finances can be tight, relationships can be broken, people hurt us. But the Lord wants to exchange our ashes for beauty, a garment of praise for our spirit of heaviness.<br />
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<b>To provide for them that mourn in Zion, to give unto them beauty for ashes, the
oil of joy for mourning, the garment of praise for the spirit of heaviness; that
they might be called trees of righteousness, the planting of the LORD, that he
might be glorified. Isaiah 61:3</b><br />
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God is always working for our good but supremely for his glory. If we allow ourselves to wallow in the ashes, the beauty will be so much more difficult to reveal. However, if we submit to his plan, as painful as it seems, he is making it beautiful. If you ever need a reminder of exchanging beauty for ashes we'll take a drive up to that beautiful lake that emerged from destruction. I can only imagine how beautiful your life will continue to be, Kate Elisabeth. Through the pain, through the inconvenience, through any earthly discomfort HE IS WITH YOU. He already laid down his life for us, his friends, and there is no greater love than that. He has taken our ashes already. He has given us the oil of joy. He has given us the garment of praise. Why? That we might be rooted in the Lord so he can be glorified. Let it always be said of us that we have laid down our pain and instead focused on making deep roots in Christ! I love you, my beautiful daughter.</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-8778134605935834242011-10-16T18:45:00.000-07:002011-10-16T18:45:59.558-07:00RecognitionLittle love,<br />
I stare into your beautiful blue eyes all through the day, and I memorize your dainty features each moment. You are always close to me or in the arms of a sibling who loves you so much. It's a precious gift to have you here. It's so nice to see the perfection in how you were created. God was so kind to give you to us. Your little life has brought so much to our family! With CF looming closely in nearly every thought I have, it can get a little busy in our house and in my mind. There are vitamins to take, vitamins to crush, Albuterol treatments morning and night through an inhaler and chamber, TOBI for an hour in the morning and an hour at night, enzymes at every feeding by mouth...it can get exhausting. The gift, though, is that it's YOU. I see you, Kate, I recognize the beautiful gift you are, and I am incredibly thankful. It doesn't make things easier, necessarily, but you make it worthwhile. <br />
<br />
Doesn't God see us like that? We are sinful, prideful creatures bent on doing things our own way in our own time. We want ease and tranquility. We are time-consuming people whose wills need pruning and shaping at all times. But, Kate, HE sees us! He knows every detail of us. He sees our sin. He sees the good in us. He sees Himself in us because we are made in His image. He recognizes us as His children. There's so much comfort in that! Even if no one else sees the sacrifices we make for each other, for our children, for families and friends, He recognizes it. Here is His promise to us:<br />
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Trust in the Lord, and do good;</div>
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dwell in the land and befriend faithfulness.</div>
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Delight yourself in the Lord, and he will give you the desires of your heart.</div>
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Commit your way to the Lord;</div>
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trust in him, and he will act. He will bring forth your righteousness as the light, </div>
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and your justice as the noonday.</div>
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Be still before the Lord and wait patiently for him...</div>
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Psalm 37:3-7</div>
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Lord, I commit my way to you. I trust you, Lord! Thank you for my precious daughter and all she is teaching us; all you're allowing for her to teach us. Kate, we had an appointment with the CF docs who come from Portland on Friday. I was so thankful to not have to drive north this month. You were 10 pounds 12 ounces! Yay!! The doctor was so happy with your continued good growth, and I see it in your legs getting rolls, in your chubby belly and cute double chin. We praise the Lord for his sovereignty over all things concerning you!</div>
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</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-52045306897493625782011-10-09T23:40:00.000-07:002011-10-09T23:47:54.385-07:00BlessMy dear daughter,<br />
<br />
This past week was a flurry of activity including school, science class, a fun surprise to see Stomp for your big brother's 11th birthday, a fun, busy day on his actual birthday with friends and family, visits with friends, and plain old life in between. In the last week and a half all your brothers and sister have been tested for Cystic Fibrosis and all their results were negative! It wasn't a surprise, but assuming they didn't have it was not something I could do given your circumstances. The remote possibility of CF lurking in their bodies caused me to wonder and worry. I do not take it for granted that they are free from this disease!<br />
<br />
We had our first service at our new church plant here in town last Sunday. It was wonderful to drive five minutes to church instead of forty! Our good friends led worship and taught us a new song (to us) by Matt Redman called 10000 Reasons. It resonated with me that day, and I found it online so I could learn it and listen to it this past week. The words hit close to home as I have struggled with many emotions lately. The lyrics:<br />
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Bless the Lord, O my soul<br />
O my soul<br />
Worship His holy name<br />
Sing like never before<br />
O my soul<br />
I'll worship Your holy name<br />
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The sun comes up, it's a new day dawning<br />
It's time to sing Your song again<br />
Whatever may pass, and whatever lies before me<br />
Let me be singing when the evening comes<br />
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You're rich in love, and You're slow to anger<br />
Your name is great, and Your heart is kind<br />
For all Your goodness I will keep on singing<br />
Ten thousand reasons for my heart to find<br />
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And on that day when my strength is failing<br />
The end draws near and my time has come<br />
Still my soul will sing Your praise unending<br />
Ten thousand years and then forevermore<br />
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My Kate, you are such a beautiful picture of God's complete love for us. You are perfect. You are an undeserved gift. You teach me so much everyday about patience, contentment, and persevering in all circumstances. Who knew a sweet baby could do that? Kate, "...whatever may pass, and whatever lies before me let me be singing when the evening comes..." Yes, yes, yes! Let me be singing when the evening comes! It has been the cry coming from my heart this past week. I am failing every day to show that I'm still "singing," but the desire is there. Whatever has come before and whatever comes tomorrow, Lord help me still sing to you, help me to worship your holy name, help me to bless you, Lord! Kate, life hurts. A lot sometimes. It hurts so much right now. Not because of you, my sweet girl! You and your siblings and your most amazing Daddy are so much joy to me. Our little home, our little life, our little conversations, our big love for each other carry me through each day. Sometimes things one is most certain of in life get stripped away, and sometimes it is just painful to the core of one's heart.<br />
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Lord, fill me to overflowing with your love so I can show your love to everyone I come in contact with because of my great joy in my circumstances OR <i>despite my circumstances</i>! "Bless the Lord, O my soul!" It's a command. It demands response. When there is hurt of any kind in our lives it doesn't come naturally to us to worship. It doesn't always come easily to bless the Lord or anyone else. I want to guard. I want to shut off the part of my heart that just hurts so much right now. There's a dichotomy between the rest of my life that is full of joy and normal frustrations and the other part that is deeply wounded. Again, like everything else (!!!!) I have to make a choice. I have been failing to truly surrender this hurt and instead have let it fester. I let myself get affected by anything I hear regarding the situation and then my stomach is weighted and sick again. My thoughts wander unproductively. But, my dear Kate, such is life. Whether it's finances, relationships, or marriages, sometimes we just have to acknowledge the hurt before the Lord and say to ourselves and to our souls that we will bless the Lord! Why? "For all your goodness, I will keep on singing, ten thousand reasons for my heart to find!"<br />
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<b>Whatever may pass, and whatever lies before me<br />
Let me be singing when the evening comes</b><br />
<br />
And now, it<i> is</i> evening. It is quiet. The day has passed. You are sleeping peacefully on my chest with your sweet angel breath ebbing and flowing from the very lungs that are harboring a nasty bacteria. I pray every time I give you the TOBI medication through your nebulizer (two times a day for almost an hour each time) that you will be healed of this <span class="st"><i>Pseudomonas</i> aeruginosa</span>, and that you will always know your security and healing is in the One who made you. Do you know how loved you are, sweet Kate Elisabeth? You have no idea. So many people are praying for you, asking about you, checking in with us to see how you're doing! And, my amazing, loving Savior sings the same song over all of us of his great love!<br />
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The LORD your God in your midst,</div>
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The Mighty One, will save;</div>
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He will rejoice over you with gladness,</div>
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He will quiet you with His love,</div>
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He will rejoice over you with singing.</div>
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Zephaniah 3:17 NKJV</div>
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I encourage you, sweet daughter, to always worship his holy name, to see his goodness, to acknowledge his great name, and when the evening of your day or your life is upon you, that you will still be singing "...bless the Lord, O my soul, worship his holy name!" Even when life hurts, Kate, as I know it will for you, I believe God will pour out the biggest blessings and his truth to you when you bless him with your faithfulness! I love you, my precious girl. Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-15092830694540006352011-09-27T00:44:00.000-07:002011-09-28T00:52:19.319-07:00GraceSweet Kate Elisabeth,<br />
<br />
More new things have become part of our routine since last Friday. When we got the news about your pseudomonas infection we were told it would take a few days to get everything lined up in order to start the TOBI treatment and Cipro. On Friday we received the nebulizer from the local DME company. Ouch. I told the man (that your Dad worked with years ago when he worked for the same DME company!) that I had never dreamed I'd see him in my house. Earlier that morning, I walked away from the pharmacy with a *grocery sack* full of your prescriptions after crying in front of the pharmacist because the overwhelmingness of everything new <em>again</em> spilled over. More ouch. <br />
<br />
On Saturday evening I noticed that you were covered in hives from the oral Cipro we'd started. I immediately placed a call to OHSU, spoke with the dispatcher and the only doctor that has seen you so far *happened* to be on call. <strong>GRACE </strong> He said to discontinue the Cipro, that it was unfortunate that you couldn't take it but that the TOBI was the more important of the two medications to fight this bacteria. We were away from home when I noticed the hives and spoke with the doctor, and I reconciled stopping the Cipro with knowing that when we returned home that night a piece we were waiting on for the nebulizer in order to start the TOBI would be on our doorstep via UPS. However, when we got home it wasn't there. It would mean waiting until Monday to start. <em>WAITING.</em><br />
<br />
Monday morning arrived, the hives were mostly cleared up, you did not seem to have any other adverse reactions, and we waited for the last piece. <em>WAITING. </em> It arrived. I went to check the mail and OHSU had sent a package with other nebulizer parts in it. Left completely confused I called and was told they were just extra parts in case we needed them. It turns out they were the right ones we needed (due to sizing) and the part we had been waiting so anxiously for from UPS was not. I was left standing at our counter with nebulizer parts all about wondering where to start and what to use. <em>Breathe. Pray. Lord, help.</em> <em>Overwhelming. </em>But, like everything else so far, what seems impossible and scary initially is covered in peace so quickly. <strong>GRACE </strong><br />
<br />
The first TOBI treatment was awkward. How to sit? How to position you? How to give you the treatment, hold the mask, talk over the top of the whirring nebulizer, calm you as you fight the mask, and try not to breathe it all in myself...*sigh. There was chaos all around me with the little boys just arriving home from Grandma's and other activity happening with her arrival. In the midst, your grandma came to stand next to me as I was sitting on the ground in front of your swing and gently put her hand on my head. Such gentleness. It's often the knowing hug, the encouraging word, the gentle touch that speaks so much <strong>GRACE </strong>in those blind moments; the moments of everything <em>new and foreign and scary.</em> In true Kate fashion, you slept through most of the treatment with only a bit of a struggle at the beginning and end of the 30 minute treatment. Phew. We have now made it through four treatments. By noon today, life had righted itself in many ways. There had been emotional turmoil coming from multiple directions, and so much was resolved today. <strong>GRACE </strong><br />
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My dear Aunt and Grandma came to visit today, loved on you, asked questions and enjoyed your sweet presence. What a gift you are every day, little love. You are teaching me so much. You are giving me such a different perspective about life, people, love, and time. So, what is this grace that I keep referring to, sweet girl? It is God's unmerited favor. It is kindness from God we don't deserve. I could say we don't deserve Cystic Fibrosis. It's just not fair, right? I could say you don't deserve to have so many medications going in your body each day, and you're not even sick! Not fair, right? Or, I can see how much kindness we don't deserve! God, help me to always see where grace is being given and when I need to give it. There has been so much unmerited favor shown to us through strangers and friends alike during these days. I am so thankful, Kate, that your life is a conduit of so much goodness and kindness. I love you, my perfect baby girl!<br />
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<span style="font-size: large;">But he said to me, <span class="woj"> "My grace is sufficient for you, for my power is made perfect in weakness."</span> Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9</span></div>
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<strong><sup></sup></strong><span style="font-size: large;">For all have sinned and fall short of the glory of God, and are justified<sup class="xref" value="(<a href="#cen-ESV-28000C" title="See cross-reference C">C</a>)"></sup> by his grace as a gift,<sup class="xref" value="(<a href="#cen-ESV-28000D" title="See cross-reference D">D</a>)"></sup> through the redemption that is in Christ Jesus... Romans 3:23-24</span></div>
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Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-6033048245948796612011-09-22T20:11:00.000-07:002011-09-22T20:11:21.731-07:00RealityMy precious little love,<br />
<br />
Oh, days like these are hard and sobering. Just when I feel that I've assimilated new information, new prescriptions, new routines, we get just a little more "stuff" than we hoped. You had a routine throat swab when we were at OHSU 10 days ago to check for bacteria. Standard CF stuff. You colonize bacteria in your lungs so the docs always check to see which one we're dealing with. This was your first one. We were told that there are a lot of different bacteria out there that CF patients harbor but that there were two that would be very rare for you to have at your age and they would require treatment. The results came today by phone call, and you have one of the two rare ones: pseudomonas. Doesn't it just sound mean? Unfortunately, it requires lengthy times of medications to try to eradicate it (temporarily at least.) We will be starting a one month 2x a day TOBI medication through a nebulizer and another 2 week medication orally. It all has to be arranged through pharmacies, insurance companies and durable medical equipment companies. This stuff isn't cheap. BAM! Reality check.<br />
<br />
I got off the phone and did what I've had to do each time something changes; each time we hear new news. Breathe. Pray. Breathe. Self-talk. Lots of self-talk. LORD!!!! Come to our rescue... I went to the back door and watched the kids playing. I talked to myself and prayed and decided to do what I've done so far...<i>rest and trust.</i> It was hard today. I know it will get more difficult to walk the talk. Person after person has spoken of how encouraged they have been by this blog; how the Lord has spoken to them through these words. I have to admit, I have read some of these posts and wonder who wrote them. Is that me? Will I endure this trial and still shout the Lord's goodness? Here it is: I can't do anything else. Yes, these days scare me. Yes, that sickening feeling reverberates through my body. Yes, it crushes the heart of this Mama to hear bad news about you, my amazing daughter. It can't be true. You are perfect. You smile. You coo. You stare so intently in my eyes. And yet, it's real. These days are proof of that.<br />
<br />
So, we carry on. I called my family. I let them love me and cry with me. I straightened up a bit in anticipation of friends arriving. The Lord knew this information would arrive to my ears today. He showed me so much love through a friend who has kindly pursued me in prayer and kindness. She brought us breakfast and my favorite coffee and visited the morning away. A half hour after she left another friend texted that she was bringing lunch to us. She arrived with a smile and I got the phone call while she was here. This is the same friend who was at my side when we received the news of your diagnosis initially. None of these friends knew that today would be a hard day. I didn't either. But they loved, and gave, and were just <i>here.</i> <i> Present. Lovely. Kind. </i> More friends arrived in the afternoon to visit and the mother of a dear friend showed up with cookies and cupcakes. All <i>just because.</i> Lord, your faithfulness shown through friends has carried me through these days. Today was no exception.<br />
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Let this always be true of me:</div>
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<tr valign="top"><td class="bluebk3" style="background-color: #f9fdff; background-image: url(http://bible.cc/lline.gif); background-repeat: no-repeat repeat;" width="98%"><table border="0" cellpadding="0" cellspacing="0"><tbody>
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<tr><td class="btext" colspan="2" height="20" style="color: #001320; font-family: Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px; text-align: justify; text-decoration: none;"> Let me give glory to you, O God, my King; and blessing to your name for ever and ever.<br />
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Psalm 145:1</div>
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Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-42247067012022613532011-09-17T21:13:00.000-07:002011-09-22T00:00:51.805-07:00PerspectiveEverything can change depending on where we're viewing it from, right? My dear girl, you are still gaining distance vision in these early months, and your perspective is almost always from someone's arms. You are dearly loved, little one. One month ago today we received the news that you have Cystic Fibrosis. It was the most devastating day of my life. The reality of that day has continued to come in waves; like the sea that never stops but almost always lands on the shore and then recedes only to return again and again. I love the ocean, Kate. You'll always know that and how it calms me, makes me rejoice in God's beautiful hand over all creation, how the sound just soothes the core of my soul. The ocean is a beautiful gift from a glorious giver, and I worship the giver, not the gift. I am thankful in my bones for how big God is and what he has made.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDM6NKjzGHMVvm2jeyaZD9_poqd9NMj1yWNIIhrgcslQgsX4x65JMuSrsscL8V3lVlqhjPJM2bbSI2tnvll7NlXqG8Id6aMIACEyer6t4VC0FTs8hDRv6d0bq1cPi8AbeyNQ2KteWqvdYZ/s1600/636025242905.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDM6NKjzGHMVvm2jeyaZD9_poqd9NMj1yWNIIhrgcslQgsX4x65JMuSrsscL8V3lVlqhjPJM2bbSI2tnvll7NlXqG8Id6aMIACEyer6t4VC0FTs8hDRv6d0bq1cPi8AbeyNQ2KteWqvdYZ/s320/636025242905.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My toes in the sand in my favorite ocean at my favorite beach<br />
Tunnels Beach, Kauai 2010</td></tr>
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The reality of your diagnosis has returned to me over and over through our days since then as we've adjusted to new medications, budget reformations, trying to remember all that needs to be done for you each day and continuing with life in general. Sometimes the long term possibilities with your health chill me. Sometimes I am in denial. Sometimes I forget that we even heard that news on August 17. I look into your beautiful blue eyes and am continually in awe that you are here; I rejoice that you are my daughter. Depending on the day, my perspective can wax and wane from the here and now to the long term and unknown. At the core is my Savior. He set this before us, he allowed this for us, and my cup overflows with blessings. I am generally not a glass-half-full kind of girl. I'd like to be, but I can be pessimistic and untrusting of others. I am happy to pour out encouragement and love but question why others would want to love me in that way. I have been drowning in love in the last weeks. It is such a sweet place to be. You, my little love, have brought such joy and HIM into my life in a way I've never experienced. My joy is not because you have Cystic Fibrosis; it is despite your diagnosis that my joy has been made full!<br />
<br />
The day after we heard your diagnosis a friend texted me and asked how I was doing. I was only trying to keep breathing. I think I said that I was afraid that life would never be as sweet again. I knew in that life changing moment the day before that my innocence had been taken. And yet, in these weeks, I have experienced a sweetness I never have before. If I did not know that your life rests sovereignly in His hands, Kate, would I have that perspective? If I did not believe that my help comes from the Lord, would I appreciate and see how He has chosen to pour out his love over our family through so, so, so many people? It boggles one's mind at the goodness. The love just keeps coming, Kate, and I can only keep seeing life as being completely full of HIM, because it is. He is everywhere! He is in every kind word spoken in our direction, in every hug, in every prayer, in each tear shed by others for us, in every tangible card and gift, toilets cleaned and floors swept, coffees delivered and groceries bought. I see the Lord everywhere, Kate, because <i>I choose to</i> and because he is letting me wade in His glorious goodness. If I didn't believe, would I see Him? He'd still be there, but I would be missing so much. This unchosen plan would still be before us, but there would be despair, depression and hopelessness. Instead, all we have to do is keep walking with Him and He will continue teaching us and showing us who He is; who He's always been. I AM. We will keep following Him because it's the only sure thing, and the view is too good from here.Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-26124760647139377822011-09-12T23:30:00.000-07:002011-09-13T00:38:25.470-07:00HeldMy sweet Kate,<br />
<br />
We headed north this morning for another visit at Doernbecher's CF clinic. Your sister came with us and sat in the front (big special treat) with Dad while I sat next to you in the back. This trip was not so daunting, but there is a heaviness within me from some external circumstances that clouded everything about today. Trying to separate all the fragments within my head left me feeling physically sick. Sweet Kate, I only write any of what I write to show you my weaknesses, my hurts, my extreme joy that you are my daughter and my hope in my Savior who is my treasure.<br />
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We listened to music much of the trip there, and Natalie Grant's Held came on P*andora at one point. I feel that the Lord continues to speak to me so much about his very real presence with us. <i>His faithfulness. </i>We are being held in this day and through it. A few of the lyrics...<br />
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This is what it means to be held...<br />
This is what it is to be loved and to know<br />
That the promise was that when everything fell<br />
We'd be held<br />
<i>If hope is born of suffering<br />
If this is only the beginning<br />
Can we not wait, for one hour<br />
Watching for our Savior... </i><br />
<i> </i>(emphasis mine)<br />
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1 Peter 5:10 says, "And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you." Kate, we all shy away from suffering. It's really a bad word in most circles. We want to avoid pain at all cost. But look at what he promises us: restoration, confirmation, strength and establishment. He's called us to himself, and I want to be found faithful. I hope to only ever point you to the one who is writing your story. </div>
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There were so many things that were better this time around in Portland. One, we knew a few restaurants close by so we chose one near OHSU instead of driving downtown. Two, we allowed extra time and arrived at OHSU with plenty of time to spare. Three, we located the Doernbecher parking lot instead of trekking across the sky bridge and walking a. long. way. Four, and this is the great news, we saw that your weight continues to climb quickly! Never have I been so excited about numbers climbing on a scale than watching you grow at an above average pace now! I had taken you in last Wednesday to our local pediatrician's office and you weighed 7 pounds 14 ounces. Today you weighed 8 pounds 6.6 ounces just five days later. You were at the 3rd percentile for growth last Wednesday and today you are at the 10th percentile! Yippee!! Kate, we prayed for your growth. People asked how they could pray and we asked that they pray for quick, steady growth. Thank you for answering our prayers, Lord!! Your overall average weight gain since your first visit at OHSU is 44 grams a day. The average for babies your age is 30 grams a day. Above average, my sweet girl! The doctor was pleased, and the dietitian told us that already your weight to length ratio is above the range needed to keep you in the "safe" zone for long term good prognosis. The better you grow, the more likely you are to do well long term.<br />
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Our appointment was supposed to take about an hour today. Instead, because of your good growth and because a couple of the CF docs will head south in October to see patients in our area, we bundled more things into our visit today so we won't have to go back to Portland until November! Thankful. So, you got a baseline throat culture to see what type of bacteria is in your airway. All CF patients grow bacteria in the lungs and airway. Period. The sticky mucous that will build in your lungs and airway over time is a breeding ground for bacteria. Nothing to worry about right now, we are told. Next up we learned about Albuterol treatments that you'll most likely need for the rest of your life. *sigh. Those will start tomorrow after we pick up your prescription and we'll be doing that twice a day. After those 2x daily treatments we'll do CPT (chest physical therapy.) This will involve cupping and clapping on various points on your back and chest to get into the routine of daily loosening mucous. Right now there is no medical need for it, but it is a proactive measure. This will take 20-30 minutes each time and the Respiratory Therapist said a minimum of twice a day but three times a day is preferable. Um, Lord, I homeschool. I clean my own home. I have laundry to do. I must cook meals and feed snacks to ravenous, growing children. Any parent knows the list is long. A little overwhelming, but we will do it! After a crash course in percussion techniques we waited for the lab. They drew blood to check vitamin levels, particularly the fat soluble vitamins A, D, E and K which your body has a harder time assimilating. They will also check your sodium level. We have to give you extra salt daily because your body doesn't process sodium correctly so we will see where that is at as well.</div>
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All those above details only serve as a way to record details. Typing the words and seeing so many strung together that I never dreamed I would one day type saddens me. I really have forgotten <i>normal. </i>This is not a complaint; it is a reminder to me not to hang on too much to this life. I refuse to be a Christ follower who goes to meet the Creator of the universe and have him ask me why I didn't trust him through the trial. I do not want him to ask me why I lost faith. Why I lost hope. Why I didn't wait for him with expectancy. Why I didn't believe he would bring restoration, confirmation, strength and establishment. No, I refuse to fall apart during this or future trials, and I imagine this trial is in its infancy, just as you are Kate. I want to declare and be known as a faithful, held daughter of Christ who walked through fire and came out safely, not because there wasn't pain and suffering in the process, but because I was held through it. I never have to do this on my own. Neither do you, sweet daughter. We have an awesome family, Kate. You have the most amazing Daddy on the planet. He would do anything for you. We have friends who have surrounded us near and far in prayer and encouragement. We have wonderful, smart doctors, nurses and other staff giving you great care and giving us great help. More than any of that, we know the One who fashioned you, Kate. He is writing your story, and<i> it's so beautiful so far.</i></div>
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Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1tag:blogger.com,1999:blog-1182272276388087116.post-76456741946846482342011-09-07T16:04:00.001-07:002011-09-07T16:30:42.297-07:00My Hope, My SalvationSweet Kate, <div><br /></div><div>We have asked for prayer in the last few weeks specifically for your growth, Kate, and I am here to praise my Savior that he is answering that prayer beyond what we hoped! We were with you at OHSU two weeks ago today, and your weight was 6 pounds, 9 ounces. A week ago today I took you to be weighed at our pediatrician's office, and after 5 1/2 days taking enzymes to help with malabsorption your weight had climbed to 7 pounds, 1 ounce. Today, after almost two weeks on the enzymes you had gained 13 ounces in the past week to 7 pounds, 14 ounces!!! Two of our nurse and medical assistant friends were celebrating with me as we saw that number on the scale! You are officially on the growth chart now at the 3rd percentile! It only took us about 7 weeks, but you are doing so great, sweet girl. You have gained exactly two pounds since birth, and although we're not on the fast track, you are gaining at an accelerated rate compared to before. I asked my nurse friend what is "normal" for weight gain at this age and she said 30 grams a day, and your weight gain in the last week has been 50 grams a day! Woohoo! I left the office to drive up to get your brother Matthew from Grandma's house, and I praised God for his favor upon you. Thank you, thank you, thank you, Lord. He answered our prayers! Kate, you are so content, so easily calmed in any situation; you are lovely and sweet and GROWING! That is enough for today. </div><div><br /></div><div>Our prayers continue for your growth to remain strong and quick; the better you grow, the better your prognosis. We would also ask that those who are reading would pray for good health for you because people around us are starting to pick up viruses, and you have been congested for a few days. It makes me nervous, and I think it's from the smoky air around us due to a forest fire not too far from Lake of the Woods. We're staying in most of the time, but I am praying for the congestion to not affect your lungs in any way. For today, Kate, I am resting in sweet confidence that our God is sovereign over every detail of <i>you.</i> He is your hope and your salvation, precious daughter, and you will not be shaken! I love you, Kate Elisabeth!</div><div><br /></div><div><br /><div><br /></div><div style="text-align: center;">Find rest, O Kate,</div><div style="text-align: center;">in God alone;</div><div style="text-align: center;"><i><b>your hope</b></i> comes from him.</div><div style="text-align: center;">He alone is your rock and <b><i>your salvation;</i></b></div><div style="text-align: center;">he is your fortress, </div><div style="text-align: center;">you will not be shaken. </div><div style="text-align: center;">Psalm 62:5-6 (personalization and emphasis mine)</div></div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-43086443655523564382011-09-03T23:27:00.000-07:002011-09-03T23:54:36.730-07:00SufficientLittle Love,
<br />
<br />Sometimes life just doesn't feel good. Today developed into that kind of day. Conflicts with one of your siblings just put me in a funk this afternoon, and I couldn't quite get out of it. I was emotional and teary the rest of the day. Yuck. Your Dad and I talked tonight, and I just shared with him that I think a lot hit me today that I hadn't dealt with yet. Everything just felt...bad. Not quite right. I prayed a lot today, Kate, and tried to take these thoughts captive. Thoughts that threaten to pull me down into a dark pit. Thoughts about the future that I have <em>no. control. over.</em> Thoughts about all that I need to do to raise five amazing, beautiful children. So, tonight after dinner I spontaneously grabbed your two older brothers who are 3 and 5 and took them blackberry picking down the road. At first they weren't too excited as they picked around the thorns and tried to find ripe berries down low. They were gingerly stepping, cautiously and carefully picking and doing a great job trying to find ripe berries at the bottom. Unfortunately for them the big juicy berries are very often at the top. It's where the warm sunshine ripens them into full blackberryness more quickly! They're the ones hardest to reach sometimes. The effort is always worth it, though. The goodness is there for the taking, but sometimes we get scratched by thorns in the process. Today was a thorny day. But there's always beauty in life, and I so enjoyed watching your brothers carefully pick two buckets of berries, growing more excited as the buckets got more full. Matthew kept telling me as we were just about finished that he was having so much fun and that I was the best mom ever because we do fun things. I thought, "Really? Because I feel anything but fun on most days." That measure of grace and love from him brought life to my sad soul. God is there, Kate, in every moment. He's there in the sadness. He's there in the thorns. He speaks through a five year old by giving love and grace. My weaknesses allow God's power to rest on me. Lord, let me glorify you, even when I feel broken! Let me boast in my weaknesses, not because they bring me pity or attention but because <em>your grace is enough</em>. It's sufficient. Sufficient. Father, let your power rest on me! Let my life show that God's grace is enough for this moment, and the next, and every moment after this.
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<br />We came home and made blackberry smoothies with a Vita-Mix full of blackberries mixed with coconut milk and ice. Sweet. Rich in color. Good. So is life. You don't appreciate the sweet without getting scratched by thorns, sweet girl. Mommy is still processing some hard things. I guess we all are in some way. Friends go through dark days. Relatives get diagnosed with hard things. Sometimes life is just difficult. Lord, let me savor all the sweetness you have given us. Let me take dark thoughts captive and focus on the beautiful tapestry you are making of our lives. Kate, your life is a beautiful piece of the work the Lord is doing in us. He is walking through some dark moments with us to bring us closer to him; closer to the sweetness and treasure that is HIM. Let me not miss it, Lord. Let your grace in this moment be sufficient for me.
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<br />
<br /><em>But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9
<br />
<br />"...and we take captive every thought to make it obedient to Christ."
<br />2 Corinthians 10:5</em>
<br />Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com0tag:blogger.com,1999:blog-1182272276388087116.post-11204660204373907552011-09-01T12:22:00.000-07:002011-09-01T12:22:29.155-07:00The Humility of GraceMy dear Kate,<div>
<br /></div><div>You are six weeks old today! Already. Six weeks ago you had been born after an easy 5th c-section and I heard your first sweet cries at 8:14 a.m. You were born at exactly the same time as your brother, Matthew, and hearing that you were a girl made me cry with joy and thankfulness! Your Dad and I have never found out during pregnancy the gender of our sweet babies, so hearing those words filled us with great joy! We have so enjoyed getting to know you over the past 42 days. You are lovely, sweet, dainty, cuddly, content, and you love to snuggle. </div><div>
<br /></div><div>We heard hard news about your health in intervals during these last weeks, and my heart carries a bit of a scar now that was not present before. I look at you so many times through the day and still can't believe that your perfect body isn't perfect; that your Dad and I somehow had everything to do with you having Cystic Fibrosis. I am forever grateful to the Lord for blessing us with a large family because I am sure we would not have five beautiful children if we had known our carrier status for CF eleven years ago. That is mercy from the Lord, my sweet Kate. You will always have the blessing of three amazing, strong, funny, loving brothers and a protective, nurturing, beautiful sister. Anyone would be lucky to have that! </div><div>
<br /></div><div>These past weeks have put us in a situation where we are very vulnerable. We have been opened and exposed as we have dealt with this news. We have been allowed to be in a position where the Lord is allowing us to walk through something we never would have chosen. And, he has allowed those around us to rise up and pour His love and His blessings and His mercy upon us. I. Am. Overwhelmed. Your Dad and I have always been ones who prefer to love on and give to others. We love to surprise people by cleaning their homes when they're out of town, or do yard work in the same manner. It feels good to love on people when they least expect it! I'm not sure why it doesn't feel as good to let others do that for us, but I have struggled with that. You will always be the recipient of lots of love and care; you won't know any different, and I know the Lord will teach you so much through the mercy of Himself through others. I am still learning, daily, how prideful I am. I like to have it all together (or appear to); I prefer to be the strong one; I am happy to dole out encouragement and advice to others. But to be on the receiving end is uncomfortable. The Lord has been speaking to me about this and how much pride is involved in "having it all together." Who am I kidding, Kate? None of us have it all together, and I am fooling myself by thinking that without Him I can do anything. Oh, I can do stuff, but it looks all wrong and ugly! There is such humility in grace. There is such gentleness in friends who pour out scripture to us, who say they're praying and are, who love and bring coffee and pray with us and just walk alongside us. The beautiful picture it paints of Christ's love for us brings me to tears. </div><div>
<br /></div><div>He is so faithful, Kate! I want to shout it from the mountaintops, but instead I will write it here for whoever needs to hear it. It's your story, Kate, but it's always going to be God's masterpiece being painted through your life. His love is so real. His mercy is overwhelming. His grace is humble. Right now I am drowning in his grace, and I know I'm right where I should be. There is nothing more sanctifying than seeing His extreme love, mercy, protection and grace through His word and through His people being real in our own lives. He is daily showing us Himself through every person who reaches out to us because of you, my sweet girl. Your little life is beautiful, Kate Elisabeth. I am so privileged to be a part of it.</div><div>
<br /></div><div>Trust in Him at all times. Psalm 62:8</div><div>
<br /></div><div>"God often has to bring us not only into the place of suffering, and the bed of sickness and pain, but also into the place where our righteousness breaks down and our character falls to pieces in order to humble us in the dust and show us the need of entire crucifixion to all our natural life. Then, at the feet of Jesus we are ready to receive Him, to abide in Him, depend upon Him alone and draw all our life and strength each moment from Him..." A.B. Simpson</div>Kellyhttp://www.blogger.com/profile/11019205504237940123noreply@blogger.com1