The Sunday before last, Brad and I went to our nieces' cheerleading competition. They are ages 9 and 6, and both are absolutely adorable, especially when they practice their routines for us! Growing up in Canada, cheerleading was never my "thing" (it's completely foreign to us Canucks, kind of like hockey might be to all you Southerners reading this blog), but down here in Georgia, it's kind of a big deal, and my nieces love it! They were so excited about getting dressed up, getting their hair done, and performing in front of at least a hundred parents and siblings.
As I sat watching them that Sunday afternoon, I started to wonder whether Claire would ever be able to participate in a cheerleading competion, just like her older cousins. I've often thought about the fact that Claire might not walk, and I'd like to think I've come to terms with that possibility, but sometimes, I'm not really sure if I truly have.
Fast forward to today's perinatologist visit. One ventricle measured 33 mm (up 5 mm from our last check two weeks ago at Duke). The other one measured 21 mm (same as our last check and the check before). I was disappointed by the 5 mm increase until I realized that one ventricle appears to have stabilized. Stabilized! I'm considering this to be a positive development.
And, although a 5 mm increase is pretty significant, our perinatologist reminded us that at this point, the measurements don't really mean a lot. What really matters is how Claire's brain responds once the shunt is placed and the fluid is drained. It may be months, or even years, before we know the extent of Claire's brain damage. And, even then, what Claire's brain looks like "on paper" isn't as important as what she actually can do.
Which brings me back to the cheerleading competition . . .
As I sat in the bleachers watching my nieces recite "B-E-A-R-S, Let's go Bears," I started to realize that as Claire's mom, I should be the last person trying to limit her. It is my job to encourage her, even if her brain doesn't look exactly as it should "on paper" or even when others may doubt what she is capable of. These thoughts led me to start making a list - a list of all of the things that Claire can do (or has already done):
- Claire can touch the hearts and lives of many friends, family members, and strangers.
- Claire can make her parents better people.
- Claire can kick!
- Claire can open and close her mouth (as demonstrated during a recent ultrasound).
- Claire can enter this world knowing she is loved.
I am sure that I will be adding to this list after Claire is born and as she grows up. I'm not sure if God will heal Claire, but I have faith that He can and will if it is part of His plan. Above all, there is no doubt in my mind that Claire is truly a blessing and a gift from God, and that she can and will do anything that God enables her to do.
Love this!! I need to make my own list! Especially after sitting in the hospital, and all the doctors and medical staff focus on what Matthew cannot do. I need to focus on what he CAN do! Thank you guys for the reminder!!
ReplyDeleteThis is beautifully expressed! On Audrey's last evaluation, I made a CAN list. It grows daily. So many "experts" focus on what the child is not doing and it's our job to focus and encourage them on what they are currently doing. That encouragement will motivate them to do more.
ReplyDeleteClaire is blessed to have you two as parents. You both are so anxious to learn about her condition and what to expect in a couple of months, that this puts you in the best parents category :).
God is so good.
Your words are so inspiring. It took me a long time (well after Tyler was born) to focus on what Tyler CAN do. Everywhere I looked I also thought will Tyler be able to do that. But now I tell myself he will do it in his own time and if not that's okay.
ReplyDeleteSo that is awesome that you are already pushing her to do great things. You are going to be an awesome mom!
Your cheerleading story reminded me of when we signed Tyler up for t-ball last summer. He loved being out on the field with all the other kids and being pushed around the bases in his wheelchair. I can't wait to do it again this summer for him.
What a beautiful post! You are ABSOLUTELY right!
ReplyDeleteCLAIRE CAN!!!!
Love,
Parker and Amy
Amy-
ReplyDeleteClarie has already touched the hearts and lives of many friends, family members and strangers. You can tell that just be reading the comments in this blog. You and Brad stay positive, trust me, physicians don't know everything and miracles happen everyday.
Laura Hammonds
Amy and Brad,
ReplyDeleteI am so proud and deeply touched by the way that you two have dealt with reality of what Claire already has,and may continue to have to endure. Life is all about the "can do's" and doing things differently than the so called "norms". She's a lucky girl to have such fabulous parents. Beautiful blog.
When Carly was born we were told all the bad things, things she would never do. Now she does all the things that they said she wouldn't and things that are medically impossible. But I say with God anything is possible. Now instead of a "can't do" list we have a "can do" list, too. You have the perfect attitude and I am impressed with the way you are handling this. Its true that they cannot predict how her brain will respond and I pray that it will be healed and that she will develop normally. My advice is to start early intervention and therapies early, they have been life savers for us. Keep us updated!
ReplyDeleteI agree with everyone else! God has chosen you to be her parents and that is because you are a wonderful mommy and daddy! Encourage little Claire to keep doing new things everyday! I keep telling Cami to try a somersault, although I am quite sure it would be uncomfortable for me if she did! :) Try to stay strong, and trust in God---he has it all worked out already. Some days are hard; I know, I will continue to pray for God's peace for you both. I remember thinking after our 20 week ultrasound how long and hard the next months would be. I decided NOT to dread, but instead to celebrate every day with Camilla. Some days I had to remind myself of that decision numerous times-on the days when fear or doubt or fatigue would plague my thoughts. I verbalize to the devil to LEAVE ME ALONE when that happens. It works! What's most important is that you are celebrating her and the gift she is and that is AWESOME! I just know that she will amaze us all. Isaac and I prayed for Claire at bedtime, that her "owee" like Cami Joy's would be healed. Thank you for sharing your heart with us! Blessings...
ReplyDeleteWe had a similar issue during our pregnancy - although it was much milder than yours. We had a twin pregnancy and lost one of the babies at 16 weeks. It was a very emotional time. We checked back on the other twin at 20 weeks and she was doing fine - the anatomy scan was great - no problems. The next checkup at 24 weeks showed borderline ventriculomegaly...then 25 weeks its up to 12mm...26 weeks up to 13-14mm. It was then we almost lost it and started researching all we could about ventriculomegaly.
ReplyDeleteWe found this forum: http://www.i-am-pregnant.com/encyclopedia/V/Ventriculomegaly/ which has been absolutely awesome. Read about so many stories but also saw some random posts regarding fish oil. Since then 26 weeks we started taking fish oil (2 capsules of mumomega everyday). The next scan was at 28 weeks. The results: ventricles = 8mm and 9mm.
I dont know whether it was the fish oil, the days and nights of praying and praying and praying or just nature.... but the ventricles shrunk back to normal. We still have to go for some monitoring and hope and pray that the ventricles are absolutely normal. I will be praying for all parents going through the same thing and hope for the best outcome for all.
We read the same thing on www.i-am-pregnant.com so Amy started taking cod liver oil and has been taking it since the day after the diagnosis. I started taking it too and I noticed my memory improved, so I think it could possibly be helping. At this point, I'm hoping it is helping limit any brain damage that might be occuring. I'm glad to hear your baby's ventricles decreased. How old is she now?
ReplyDeleteAmy, your thoughts are beautiful. I am just in awe of you and Brad.
ReplyDeleteI started taking the fish oil stuff after Cayman's diagnosis too. And still, every morning she gets a dose of it called Brainy Play. I have a link to that product on my blog sidebar. I really, really believe in supplements. I credit so much of Cayman's progressive development and the health she has to it.
@brad: were still in pregnancy and at 29 weeks today. Our next scan is in a week so hopefully the ventricles remain normal. The great thing is that our baby has no other problems so it's isolated. I know fish oil may not work for everyone it just depends on the cause of the issue.
ReplyDeleteBest of luck to all.
God picked out the perfect parents for Claire! You're going to be amazed at what she can do. I read this to Hannah and Katie and they loved it! We are all still praying for the three of you and love you all. See ya tomorrow! Go Dawgs!
ReplyDeleteChad
It's only been six hours since I have been introduced to Claire and already love her. Just a few quotes I recently read and want to share: Fear wraps its icy hands around your heart when the doctor's report is serious--in times like these people have found comfort in a deeper, more intimate relationship with God. The experience of illness can draw you into a sweet relationship of trust and love with God that ultimately brings the most tender comfort you have ever experienced. I worked with Amy for only a short while and would loved to have worked with her longer and gotten to know her better and could be there for her now - Amy, God wouldn't be giving you this precious little girl if didn't have a plan for her - she is His chosen one and with all the love out there for her - she will be blessed and survive this beginning. Wow. Amy, a mom...How blessed you are. You can add to your list that Claire was chosen by God to come into this world to share her love with each of us. She is hope for the future. She is our future. Amy, an awesome lawyer, but more than that, a soon to be awesome mom and a devoted wife and friend to all. This truly will be my best Thanksgiving because I can give special thanks for Amy, Claire and Brad and to the Doctors at Duke and in Atlanta. My Dad was a devoted "baby doctor" and my brother a surgeon so I have special love for medical professionals and am devoted to a really special doctor in Atlanta, James Capo - you can't find one better than him. So, I will end this by saying I am thankful that God is bringing Claire into our world and I look forward to the day when I can hold her and love her even more. Thank you Facebook for helping me find Amy. Happy Thanksgiving to all. Betsey Brock
ReplyDeleteGeorgianna prayed...
ReplyDeleteAll I can say is WOW! I pray that Claire comes here as the miracle child she's deemed to be and a Blessing and testimony for the world. The power of prayer is awesome and my prayer is that God manifest himself in this situation. God shield and protect this baby that's loved by so many. God touch Amy's womb and do what only YOU CAN in a time such as this. God Bless Brad & Amy as they eagerly await the arrival of their baby girl.
Amen.