during jedi's birth chris and i had to make decisions without alot of information. we had to make decisions without a clear and similar trailblazer ahead of us.
on the "living with trisomy" site there are alot of great people and ALOT of great information. BUT.
every child with trisomy is different. every symptom of the disease that is collected and stacked against the little one is so unique both in the combination and the severity. so it was difficult to decide alot of things. they don't exactly publish a "what to expect when you are expecting a trisomy blessing" book.
decisions like...
- what's the best way to deliver? what do we look for in a care provider?
- should we sign a DNR?
- what further tests should we have run?
- should we get an amnio?
- when he is born how aggresive should we fight to help our little guy live?
- should we intubate?
- should we do lasix?
- should we risk him dying in an mri machine just to see how his brain is?
i could go on. and there is no one you can really ask. and if you ask anyone with personal experience they can really only tell you what they did with what they had(which is probably alot different than what you'll be given).
when we found out that jedi had holoprosencephaly and i posted on facebook about it several people chimed in saying "oh, i know a kid with that and he's 9!" and when we found out that jedidiah had tetrology of fallot and i posted that on facebook i heard that "sean white had that when he was born". and i wanted to say- "well, that's just a TINY sliver of the pie- there is so much else going on affecting multiple systems."
the very BEST advice i got when pregnant with jedidiah was from tracy winsor from "be not afraid". she is so great and sensitive when dealing with mothers who are carrying a baby given a poor prenatal diagnosis. one night at almost 11 pm i was pacing in front of my house with her on the phone in charlotte- i asked her "tracy, how will i know what to do? how will i know how hard to fight?"
and she said, "you'll know when you hold him. if he opens his eyes. if he cries. if he fights, you fight."
and i took that visualization to bed with me- every night for weeks. and she was right. i knew. those first few moments were doubtful. he wasn't breathing. he was getting darker and darker. and then he opened his eyes and started crying. and we knew he was a fighter. we knew that we owed him tests to find out more on how to help him. we knew that not deciding before birth was the best decision we could've made. leaving it open for God to decide and for us to follow.
and keeping myself open to God's will. had i felt called to an induction- i would've done it. had i felt called to an amnio- i would have done it. but i really felt called to leave it all up to Him. and no one can tell you God's will- you have to dig deep- find time for silence to listen and turn it over to Him.
This rings so true to us...no one lives the disease the same. But the comment '"you'll know when you hold him. if he opens his eyes. if he cries. if he fights, you fight' gave me chill bumps bc that is it. These amazing kids/babies can tell you thru God. They tell you when it is a fight worth fighting and when it is not...they tell you when it is a test worth having and when it is not... and personally I think that is what so many ppl mean when they say special needs kids are closer to God! You are Jedi's Mom...you and Chris made all the right choices for him just like God made the right choice giving him to YOU!
ReplyDeleteLaura
You are so correct when you write that every child is different. This is the problem with genetic labeling. If not for the label, one parent might say they pursued treatment because their child had only an airway issue and another might say they didn't because their child had major brain and heart anomalies and nobody would think anything of it. The fact that both children might have trisomy 13 is or should be, irrelevant.
ReplyDeleteBefore our daughter was born, we researched (like you) and discovered that she might be a child who would benefit from treatment. We wanted to make decisions as one would for a baby with the same issues but no genetic label hovering over them. Our daughter was born crying with Apgars of 8 and 9. The heart condition that had been predicted was non-existent.
Unfortunately, it seems the medical system had a different plan for our child than we did, and she died tragically in the absence of palliative care or curative care.
Seems like the trisomy 13/18 parents have figured out that our kids are all different, but equally special. Let's hope that we can share this discovery with the medical system.