December 16th, 2013, our world was forever changed. It was on this date that we boarded this crazy roller coaster ride. This was the day we had our level 2 ultrasound, which for most, is simply the big-exciting-gender-reveal ultrasound. We did learn we were having a "Caroline" instead of a "Connor" but we also learned much more than we ever wanted. Our world was introduced to a new vocabulary of medical terms like, "ventriculomegaly," "trisomy", and "cavum septum pellucidum." I declined the amniocentesis that the OB strongly urged that day but opted for blood work to hopefully rule out trisomies 13, 18 (usually fatal) and 21 (Down Syndrome.) Unfortunately, it would be weeks before we would learn the results with the upcoming holidays and all. So, needless to say last Christmas was a pretty gloomy one. Grief entered our home and settled everywhere like leftover tinsel glitter in carpet. You ain't getting that stuff up- it's like it fuses with each individual fiber. Even though we didn't have a definite diagnosis or prognosis, we grieved for our child and we grieved for our dreams for our child. Whether we want to admit to it or not, every parent has expectations for their child's life. You expect her to learn to read, write, ride a bike, play an instrument, and on and on it goes. So, I buried each expectation for her and mourned. How I mourned, but we made it through Christmas and we learned our girl did not have any of the 3 trisomies tested. While this was a huge victory, we still had months of ultrasounds and uncertainty. The doctors, nurses, and genetic counselors gave us bleak outlooks. Although we still don't know if Caroline will excel at ballet, piano, or geometry, we know she has overcome every obstacle placed in her path. She has defied the doctor's bleak outlooks and small expectations. Caroline has not only survived, but she has thrived and now, this December 16th, we have another climb.
This Tuesday, she will be having her first lip and nose repair. This surgery is typically done at 3 months of age, but unfortunately, she had other issues that needed to be surgically corrected first. When people ask about Caroline, and I tell them about this surgery, the typical response is "Oh, won't you be so glad to get that done?" While that would seem the logical outlook, I am actually not at all looking forward to it and, no, in fact I do not feel glad to "get that done." As hard as it may be to imagine, I think my daughter is perfect and I will actually miss her cleft. Yes, I will miss what most see as a flaw or imperfection. Then I hear "but she will look better." Ah, but as her mama, it is not possible for me to see it that way. Since she will always be perfect to me, "better" is not possible. It will be different and I know as she gets older, Caroline will definitely see the repair as "better." As I know this surgery is inevitable, I will certainly be glad to get it behind us. This will probably be the most difficult thus far, in regards to discomfort and recovery. So, if you don't mind, can I ask you to pray once again for our sweet Caroline? If you would like specifics, please pray for an easy IV stick. Poor thing takes after her mama and has gummy worm veins. So, we are lucky if she comes out of surgery with only 10 pricks on her arms, legs, and hands. Please pray she will be able to eat afterwards. She will be fed with a syringe or spoon for about 2 weeks after surgery. Please pray that she will be able to resist sticking her hands in her mouth. Since her lips and nose will be swollen and packed, the doctors don't want her putting anything in her mouth. Miss Caroline likes to suck her thumb and twirl her hair with the other hand so this may be a bit of a challenge.
This week, I have been taking more pictures, pouring over photos, and simply gazing at my baby more. I want to commit this beautiful, wide, imperfect-to-the-world-but-perfect-to-me smile, to memory. I never want to forget the smile God formed. If you are my Facebook friend, I am sorry I have been blowing up your newsfeed lately but in the words of my husband, "if they don't like it, it's called 'unfollow!' "
Who can turn the world on with her smile?
Who can take a nothing day, and suddenly make it all seem worthwhile?
Well, it's you girl, and you should know it!
With each glance and every little movement, you show it!
Love is all around, no need to waste it. You can have a town, why don't you take it?
You're gonna make it after all
You're gonna make it after all… You're gonna make it after all…
