Wednesday, August 20, 2008

today's mood: thankful

Actually, that's been my underlying mood for quite a while now. Adam and I really didn't know what to expect when we were anticipating the details of Ethan's transplant. Would he begin to look frail? Would he stop eating? Would he be in constant pain? Would he lose his active personality? Would he get profoundly worse before he got better? Countless questions. Fearful expectations. But with each fearful thought... each time we wondered what to expect... they were countered with a calming desire to believe for miracles each step of the way.

So here we are. Right in the middle of everything we had been so curious (so nervous) about.

Let's do a mini review...

Back in April, when we first found out about Ethan's illness, I was sad that I'd not be able to stroll him around outside or have fun with him in that way. But I was able to and I did. Many times. I was sad that I wouldn't be able to experience the "firsts" of Ethan eating baby foods or wearing his 'big boy' clothes before we had to come to Boston for transplant. But we did, and have messy pictures to capture the memory!

I was disappointed that I wasn't able to take Ethan for his 3 months portrait, because that's around the time we found out he had cancer. However, when our cutie turned 6 months old, just a couple of weeks before we went left for his transplant, we received the most wonderful surprise of free portraits in a wonderful studio that had been reserved just for us!

Anything I thought might have been taken from my being able to experience various joys as a mother in the early stages of my son's life had either never left to begin with, or were restored to me in more ways that I could have hoped. We've been able to experience anything that a "normal" family would have been able to... though maybe in a different way at times... but we've never been at a loss for memory-making, laughter, or desirable moments.

God is so very good. To the undeserving heart... all the time. Even the things we didn't know we wanted, we've been able to have.

His goodness has continued to be in abundance even through this stage. Ethan has not changed a bit in the ways that we feared he might. He is still very active. Still loves to smile and play. And the most shocking to all the doctors is that he still has a very strong appetite! We had prepared for mouth sores to have taken over his ability or even his desire to eat, and that as a result, he'd be on intravenous fluids by this point. Absolutely not the case! Ethan takes in about the same or even sometimes more formula by mouth than he did when we were at home. The doctors are really very surprised by this. This is such a healthy thing for him if he can keep it up. Some babies forget how to eat/suck on a bottle and their digestive system stops working as a result of the mouth, esophagus and digestive tract sores. This can prolong their ability to be discharged to go home as they have to wean off of the IV fluids and learn to take a bottle again. I am so thankful every day when Ethan reaches for that bottle and downs all of its contents like a pro! This is such a blessing that I didn't even fully realize until we got here and fully understood how great it is that he is still eating on his own. Please join me in praising God for this sweet answer to prayer. I know it's to be understood that this could change in coming weeks, but I know God loves to show His glory through answered prayer. Please continue to be in prayer that sores and ulcers would not be a factor in Ethan's appetite and that he'd take a bottle throughout this whole process. I love seeing the amazement in the doctors and nurses when they see how much he at the previous day... and I'd LOVE to see that continue.

Thank you also for praying for Ethan's line to clear up. According to reports yesterday, the medication level in his one line has cleared up considerably! He will probably only have to have blood taken from his arm/hand one more time - tomorrow. This is a wonderful answer to prayer, as I hated the idea of him having to get pricked for a few weeks!

I was thinking this morning about how "do-able" all of this has been so far. I was thinking about the corvette vs. the junk yard car. I was thinking about how God has blessed Ethan with His protection, and blessed Adam and I with His peace. It's very real. It's very amazing. And I am so, so thankful.

Then I thought about little hiccups or major complications that God could allow to enter into our lives. Would that make His protection any less? Would that change the outcome of the miracle I know we will receive... have received? No. But sometimes things are allowed to happen so that we can see God answer prayer. He receives praise and glory from a bleak situation changed to good. And I accept that, anticipate that, and love that. But, of course, secretly (or not so secretly!) I still hope and pray for amazing miracles every step of the way....

Your prayers for us have been a joy to the Lord, I just know it! Family, friends, strangers, and even children... go before our Heavenly Father and pray for the life of one small baby boy. The tears that thought brings to my eyes.... thank you so much for that. He is hearing you and is blessing every word you say on our behalf. I owe you each so much.

Deuteronomy 10:21 He is your praise, and He is your God, who has done for you these great and awesome things which your eyes have seen.
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Additional prayer request: Please be in prayer for Baby Aiden. Their site is listed on my blog. They are from Texas and came up to Boston to see some specialists who might have been able to help find out what has kept their little boy so sick for 8 months. I've been able to meet Aiden's mom (Hannah) and spend time talking with her here in the hospital. It's been great to meet her, however my heart goes out to her and the countless frustrations she's encountered since they've been here. It is a long story, but the bottom line is that they are not any closer to finding the root of Aiden's problem - and the specialist they came to see has just left for a month long vacation. I know God has a plan in all of this for them, but I also know that they could use some encouragement that this trip was not in vain. Please help in praying that Aiden would be healed of his mysterious illness and that this family could live in peace together back at home (Aiden is one of three adorable triplets!).

9 comments:

Anonymous said...

Kasey,
We are so thankful for Gods direction and love He has given you and Adam. Its so neat to see the Drs. amazement at Ethans progress. What an awesome God we serve.

We will continue to pray for you all and baby Aiden. Keep up the wonderful testimony. You are touching more lives than you know.
Have a wonderful day. Sharan

Anonymous said...

I saw a bumper sticker today and it made me think of your family. It said "I don't believe in miracles, I DEPEND on them!" Jennifer Glover

Hollie said...

Keep believing in those miracles Kasey...if anyone has taught me that, it is YOU - always the Corvette, baby! You inspire me every time I open your blog! I bet it is so amazing to watch the docs/nurses scratch their heads because Ethan is not doing anything they 'expected'! GOD IS SO GOOD!!!! Love & Hugs!!

Anonymous said...

Hi Kassey,
I am a sister in Christ from Charleston, SC. I have kept up with your precious little baby boy's life for sometime now - and I have prayed fervently for him, you and your husband. I just wanted to let you know I saw a rainbow today, and my thoughts immediately came to you - and I prayed and will continue to pray. You are an inspiration to me. Thank you for sharing your family's life. Remember God IS good.

Anonymous said...

Hey Kasey,

I'm thinking of the start of the school year next week and remembering the excitement you had last year in teaching here. You may not be in a classroom this year but you are teaching others to follow and trust the Lord. You are showing others grace in trials and joy in difficulties. You have shown the true meaning of 1 Thess. 5:18 "In everything give thanks, for this is the will of God in Christ Jesus concerning you.
We miss all three of you,
Love, Nancy G.

Elizabeth said...

Kasey, always the Corvette,That's Right! We will continue to pray for you all and baby Aiden. GOD is SO GOOD ALL The Time!!!!Love & Hugs
Elizabeth&Family

Carrie Comstock said...

" But with each fearful thought... each time we wondered what to expect... they were countered with a calming desire to believe for miracles each step of the way. "

That's some good, good stuff. Thanks for sharing your heart.

SKC said...

I just caught up with this week's entry and am so glad you revealed to us the "bad" moments. I really just feel rejuvenated after reading your innermost thoughts and how God continues to lift you up. That helps me a lot in my walk with the Lord. So continue to let us hear the good and the bad so we can rejoice with thanksgiving as God continues to protect sweet Ethan and we can feel your heartache when you are "down", knowing that our Heavenly Father will be there to lift you again.

Anonymous said...

I just finished reading you blog for this week. I'm glad you let us know when you are down as well as when the Lord lifts you back up. We rejoice with you in God's protection of Ethan and in his faithfulness in lifting you and Adam up when it all seems too much.