I said yes.
When we got the Down Syndrome diagnosis, I said yes. Yes, I’ll keep this baby. Yes, I’ll love this baby. Yes, I’m ready for a special needs child (or at least I will be eventually). Yes, I’m ready for medical complications.
Chris and I once even talked about fostering or adopting a special needs child. It was theoretical at the time and doing that would be more of an active choice rather than a passive gift. It’s a little different when you prepare for and actively seek a child with a diagnosis than when you are unexpectedly handed one. But clearly, somewhere deep in our minds we were prepared. This doesn’t mean it hasn’t been an adjustment. I’ve grieved for the baby I thought I would have. I’ve been paralyzed rummaging through all the future therapists, doctors, websites, IEPs, and recommendations from other parents. I’ve worried about what my baby will look like, how s/he will be treated, whether s/he will even leave home. Facing the diagnosis of Down Syndrome has been a journey. But I look forward to the day when I can post my baby’s photo onto my facebook Down Syndrome group and get the oohs and ahhs. I was excited for the announcement I would make to the world, stating how we knew for months this baby had an extra chromosome but we welcomed him/her with open arms.
Now I long for those days when it was only Down Syndrome.
Maybe I worried I wouldn’t love the baby? But these new complications have really put the diagnosis of Down Syndrome in perspective. I almost forget that my baby has Down Syndrome- it’s a minor hurdle compared to what s/he faces.
A key distinction I’ve learned from those already raising a child with Down Syndrome is that my baby will be a child with Down’s Syndrome, not a Down’s Syndrome child. It means that s/he is a child first. A baby doing baby things- learning to breathe, eat, communicate, explore, as any baby would. The Down Syndrome is secondary. With the new diagnoses, I’ve been thinking of this baby as kidneys and lungs. Kidneys and lungs. Will they work? Kidneys and lungs. What’s going to happen? I need to take those wise words from parents past and remember: my sick little baby is still a baby first.
I’ve thought about the hard things. What it would be like to have a stillbirth. Holding the baby if it’s dying. But I haven’t allowed myself to think about the good things. This baby could live and thrive.
I’ve been up and down so much on this rollercoaster, it sometimes feels a little easier to stay in one place, even if it’s a low place. If I let myself hope, than I’ll fall harder if something bad happens. But that doctor tried to give us some hope last ultrasound- the lungs look fine. Those on my Down Syndrome facebook group shared their experiences about preterm babies who thrived. In a few days it’ll have been 4 full weeks since we were diagnosed with low fluid. And the baby has hung in there. I’m still pregnant! I’ve been feeling lots of movement the past few days. I feel like maybe this baby is trying to tell me something.
Am I having little optimism? Maybe.
Life. Health. This is what I want for my baby.