Thursday, April 17, 2008
We all should be as lucky
At 19 weeks in my pregnancy I was sent for a level two ultrasound due to my "advanced maternal age", I love that term! While there we found out that our 6th child was to be a girl and we also found out she had a hole in her heart. At first we were assured it was probably nothing, come back in a few weeks and they would rescan her little heart. 2 anxious weeks passed and after the second echo of her heart it was determined that this was not just a hole but a serious heart defect called AV canal complete. The seriousness of which was explained to us with an added question of how we wanted to proceed. Proceed? What were they asking? It took just a moment for me to realize that they were asking me if we planned on terminating. An actual feeling of wanting to be sick waved through my body as did the desire to get up off the table and bolt out of there.I managed to pull myself together wipe that look of shock off my face, to ask a few more questions. They continued to explain to us that this particular defect was primarily found only in the Down population and the chances off it not pointing in that direction were... slim to none! Now they asked, did I want an Amnio? No thank you. Why? Because I did not want to be that 1 in 200 that end up miscarrying therefore giving her no chance at all. Am I sure? Yes, lets move on people. This banter could have continued on and on. I leave the office. A bit shell shocked for sure but determined to face this the way I have faced every other thing in my life. And I did. WE did. We embraced the idea of raising a special needs child. We were far more concerned about her heart defect then anything else , and that proved rightly so. We were very open with everyone to share what we believed we would be facing come March. I wanted others prepared more then myself and I mostly wanted people to see the way we were handling it so come March we would not be encountered with looks of pity. Better said then done as we still got that and a whole lot more. I could write a book, literally, with the kinds of things that have been said to us, our children our family over the last year. Yes, some beautiful, others, well, not so much! One thing we heard often after she was born was, "Do they know how high functioning she will be?" Now, most said this out of just plain not having a clue, they meant no harm but lets be real here, do any of us know how any of our other children are going to function on an intellectual level? Even my mom , who I love dearly said "I just know she is going to be high functioning" I know she said that out of love for Zoey. Wanting her to be the best she could be but did it or does it really matter? Zoey is going to be exactly who she is meant to be. I often look very intently at her while she's playing or swinging or when we are talking together and even I wonder what she understands. We treat her the same as we did our other babies. Well alright, actually she is absolutely spoiled and has never cried herself to sleep, ever! We progress with her and her future with the same hope we have for any of the others , to be happy and healthy. Although the healthy part has been a bit elusive . One thing I absolutely know is she knows right now, all she will ever have to know and that is that we all love her more then mere words could ever, ever describe We know this by the way she looks right into our eyes when we hold her. We know this by the way she gently touches our faces as only Zoey can do. Those of you that have held her know exactly what I am talking about. It is as if she is mesmerized by our faces. We know this by the way she touches our throats as we speak to her, she is comforted by the sound and feel of our voices. We know this by the way her smile lights up when any of us that adore her enter a room. Yes, we have had to alter plans and dreams a bit. We have had to change our expectations a bit. Mark and I have had to talk about the day when we will no longer be here to care for her but then out of the blue be told by Caitlin, maybe God planned on us having such an age difference so they would be here to love and protect her instead. I know for sure, at the tender age of 13 months that Zoey knows all she will ever need to know. She knows that she is totally, completely and unconditionally loved by us all.
*Zoey continues to be utterly and absolutely miserable. We resurrected the baby swing and that does bring her body some peace. Night time is not bad. She is usually up once, maybe twice to eat and go back down. Hard on me as Zoey has always slept through the night. We were very spoiled, I know. I do worry that she is in actual pain and that I am missing some other serious issue but logic tells me it's the medication. Continue to pray for my baby that she finds her way through this and is on to better days.