Hi Friends,
We've been going through a lot of adjustments the past six weeks. Adjusting to having a newborn, adjusting to being a family of four, adjusting to losing my teaching income, adjusting to being a stay-at-home mom (for me), adjusting to sharing the spotlight (for Connor), adjusting to having a hormonal crazy wife (for Mikey :), and adjusting to having a son that is a little different than we anticipated.
Tomorrow is Bryce's due date. My pregnancy was so horrible that I can't even imagine still being pregnant right now. I was thinking about the fact that had he not been born early, we would still be oblivious about his 'condition'. We would still be anticipating the birth of our "perfect" little boy. We would have no idea about the shock and sadness we were about to experience. Man, that sucked. I am so glad we are not there right now. I'm so glad we are six weeks beyond that. I am so glad we have already been through it and can say we're okay now. I can't even tell you how glad I am. I keep thinking back to that day in the delivery room and I would never want to be there again.
Even though we have adjusted to the fact that Bryce has Down syndrome, at times I think I am in denial. Right now, Bryce is very much a "normal" newborn. He sleeps, eats, poops, and snuggles, just like any other baby. He is actually ahead of where his big brother was at this age. Considering he is still supposed to be in the womb, I think it's pretty impressive that he is starting to coo occasionally, is on the verge of smiling, lifts his head, and has even rolled over four times. I am so proud of how well he is doing, but at times I think it adds to my denial. It's hard to differentiate between denial and hope/determination. I don't want to lower my expectations for Bryce, but I need to be realistic at the same time. Most babies with Downs are barely crawling by the time they are a year old. Just because Bryce rolled over at three weeks doesn't mean he's some kind of exception to the rule, but the mama bear in me wants to think he is. The mama bear in me wants to say, "Oh yeah, look at what he can do! You can take your lower expectations and shove them!" Does that mean I'm in denial? I don't know. I'm probably setting myself up for disappointment, but I don't ever want Bryce to think he can't do something just because he has an extra chromosome. When we were still in the hospital, one of the NNPs told me that we
could probably expect to be out of there before Bryce's due date, but
not before he was 37 weeks (we were still 2 weeks away at that point). I
got so upset because I felt like people were going to be telling him
his whole life what he could and couldn't do. She didn't mean any
harm--and she ended up being right, but it was part of my journey. It
was the first time I had to face that idea of being realistic while still
hoping for the best.
It is natural for parents to want the absolute best for their kids. We don't ever want them to feel pain or disappointment. We want everyone in the world to see how wonderful they are. I think sometimes about all the hard times Bryce has ahead of him and I feel so guilty. What did he do to "deserve" this? I think about his frustration when he starts talking and we can't understand him. I think about how hard it will be to explain to him why his brother can get his drivers' license and he can't. I don't want him to have to go through those things. I just want him to have a charmed life.
While I obviously haven't figured this all out, I can say that we are adjusting. There hasn't been a day in six weeks that I haven't thought about Down syndrome, but there have been plenty of days lately that I haven't cried about it (yay!). We'll get there. Thanks for the continued thoughts and prayers. Take care!
Julie
P.S. Many people have asked how Connor is adjusting. He is doing really well! He doesn't pay much attention to Bryce, but there isn't any resentment. He is such a good boy. He doesn't like it when Bryce cries ("It's okay, Brycey...don't cry", "It's going to be okay Brycey"), and we've even gotten him to give the baby hugs and kisses. He is the sweetest boy around!