Baby Avery

>> Tuesday, July 14, 2009

Kamryn had a great day and I have updated her condition over on the right hand side of the blog under current condition.

While I would love to talk about Kamryn's progress today, tonight's post and focus needs to be about an amazing family and courageous girl, Baby Avery. I talked the other day about how this experience has taught us so much about how precious life is and that lesson is even more clear tonight. Sometime this evening, Shane and Carissa are going to make what I believe is the most difficult decision any parent could possibly make. They are going to stop all of Avery's assistance and let her go.

Stef and I have imagined that day as you have to face that possibility with CDH, but even with Kamryn fighting for her life, I can't truly understand or appreciate what these two amazing people are going through. Shane and Carissa have been such an inspiration to us and have taught us so much over the past few months and all of this just seems so unfair. I'm more angry right now than anything and just can't believe how cruel this condition really is and how it can take so many precious babies from the most amazing parents. What these babies endure at such a young age is heartbreaking and inspirational at the same time.

I would be lying if I didn't feel incredibly guilty that we are celebrating small wins these last few days when I know that Shane and Carissa and other parents are struggling to find an answer for their child's deteriorating state. I just don't understand why all of this has to happen and what purpose it serves. I know that Shane and Carissa are struggling with this question even more than I am right now and wish I had an answer for them to ease their pain. I ask that if you only post one time ever on these blogs, that you will go over to Baby Avery's blog (Keeping up with the Keirseys) and send them a message. Trust me, it means so much to the families going through this.

Shane and Carissa, I am so very sorry that Avery's journey with CDH is ending like this. I don't have the words to make it better, but you need to know that you all and Baby Avery are in our thoughts and prayers. You have been an inspiration to so many people and Baby Avery has touched so many lives. We are just so sorry.

Shawn and Stephanie


Allison July 14, 2009 at 9:04 PM  

I have been praying for Avery so much in this past week-I am grieving so much for a family I'll never meet. Yet through my tears I will still say, "Lord, blessed be your name." I know this must be quite a blow for you guys. I just don't know what to think or say. I just feel so sad-I guess being a mom will do that to you-I am also unbelievably glad about Kami's improvements! I'm right there with you on the guilt thing too.

On a lighter note, Grant & I are so excited about the girls coming tomorrow. I showed him pics of your family today-I really hope Hollie has fun tomorrow-3 yr old boys sure have a lot of "energy"!

Maxton's Mommy July 14, 2009 at 10:03 PM  

CDH is horrible and it disgusts me so much at times.I have to remind myself that I was brought into this for a reason. I have made invaluable relationships and while I hoped to be caring for a baby now, there is a reason that I am not. Don't feel guilty for celebrating Kamryn's triumphs. I can say that sometimes I do wonder why my baby couldn't have made it and some jealousy comes in to play- but, CDH is still awful on families- regardless of the outcome. I pray for peace for sweet Avery's family. I know many people prayed for that and we definately felt it.

We are praying for your sweet girl! 30!?! WOO HOO! :-)


Anonymous July 15, 2009 at 12:48 AM  

Do not feel guilty. I have also been following Avery's story, and I am sure her parents are celebrating Kamryn's small wins, even with the grief they are dealing with. I have lost my husband to melanoma, and while it is hard to know that he couldn't be saved, I find much joy in hearing of others who are able to beat melanoma.

Tracy Meats July 15, 2009 at 1:22 PM  

Don't ever feel quilty for celebrating Kamryn's triumphs and good days. Kamryn is fighting for her life daily and we need to celebrate those wins and good days...for each day we get to spend with our children is a gift. This birth defect is a monster and I hate to watch so many families have to endure the journey, no matter the outcome. It is cruel that half of all babies born with CDH will not is not right, it is not fair and it is down right cruel. Hold onto Kamryn tighter and tell her you love her and to keep fighting. My heart goes out to Carissa and Shane, for they are an amazing family and I am praying they find peace and comfort in the days ahead.

Prayers your little girl keeps the good days coming...go Kamryn go!!!

Much love to your beautiful family, Tracy

Anonymous July 20, 2009 at 8:36 PM  

I can't tell you how wonderful it is to hear about Kamryn taking 52cc's! That is amazing and such a blessing. You all are doing great. We send our prayers,
The Peacocks (Austin)

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