It’s hard to believe it has been a whole year since I first looked into the eyes of my new baby and instantly knew he was different. I knew my life had been forever changed. I’d had my life all mapped out since middle school. I would have 3 children by the time I was 30, a boy and two girls, I would be a young cool mom, not one of those cool moms who provided their children with booze or anything, but still the cool mom. Well clearly my plans took a detour after Mr. Grey when baby number two, Lumpy, ended up having a penis.
I mourned the life I had planned and moved on, not the girl I had hoped for but the detour ended up not in the least bit unpleasant and we were still headed in the same direction to being our big happy family! The next time I thought not finding out the sex of baby number 3 would make it easier when I ended up with a third boy, girl or boy I would be fine.
I had learned that the sex of my child didn’t really have much of an effect on my plans anyways, and by now the thought of a girl kind of scared me. Then my plans took an even bigger and completely unexpected detour.
Forget the third penis, this baby had a third 21
st chromosome! I mourned big time what I thought was the biggest detour possible.
This was a detour onto some abandoned highway in the dark, full of bumps and potholes that I couldn’t even see coming, and totally in the opposite direction from where I had planned. I was right. But it wasn’t a bad thing! These bumps and potholes have forced me to slow down.
Because of Baby Hulk I have slowed down. I am better able to appreciate things. Baby Hulk has made me realize I can’t stop things from happening. I have always had issues with anxiety, but I have embraced that my life now is very different and I have adjusted. I was afraid of all the doctors appointments.
Just calling and making appointments usually stresses me out horribly. But now it is just something I have to do! Then I was afraid to
go to the appointments knowing they could bring to light something terrifying. In the first year of his life he had to have two ultrasounds of his heart to check for defects, we checked his thyroid three times, he had a hip ultrasound to check for hip dysplasia, two visits to the ophthalmologist to check his vision and look for things like cataracts, or a misalignment of his eyes.
I’ve taken him in needlessly quite a few times for colds (thanks to two big brothers in school) and had them look at me like I am crazy because my “soooo congested” baby’s oxygen levels are at 100%. Then there were the few times I did take him in for something more, like an ear infection, pink eye, and croup. The ear infection got scary when the doctor saw the petechia on his nose (from him crying) and sent us straight to the lab for a CBC, I didn’t understand why he wanted us to do that until about an hour after I got home. I finally put things together, the doctor had called the spots a rash, one of the signs of leukemia is a rash. I managed to freak myself out for about 5 minutes and then noticed I had missed a phone call. I checked my voicemail; it was the pediatrician telling me the lab results came back normal.
Things could change, bad things can happen but life is always like that. Baby Hulk has taught me more and more that you just can’t dwell on things, the negatives, and the what-ifs. You have to live in the here and now.
My baby is healthy. It is as simple as that! His physical therapist says he is the highest functioning baby with Down syndrome she has ever worked with. The unknown is now so exciting to me! I wonder what could happen today. What new and amazing thing will my baby do?
Thinking back on when he was born I am actually thankful for the experience we had. Sure there are things I wish had been different, maybe if I had found out ahead of time I could have had time to come to terms with my new life before he arrived. That way I could have just looked into those eyes and felt that instant love instead of my stomach falling through the floor and utter despair, then maybe I would have been able to avoid the guilt I felt for NOT being able to experience that. For feeling fear instead of love when I first looked into his eyes. Luckily those feelings have passed too, now my negative feelings are more about silly things, like the fact that in all the chaos of his birth no one did his foot prints. I don’t have anything to look at and say, ‘look how tiny his feet were!’ When I realized a month later that I didn’t have them, I of course made some of my own but he was bigger by then, it just isn’t the same! But compared to other parents' experiences, ours was great. I’ve heard stories of people being told their baby will never talk or walk or be able do anything for themselves, or the parents who had a prenatal diagnosis, and within the same breath of informing the parents their baby had Down syndrome, their doctor asked when they would like to schedule termination. And of course these babies have grown and gone on to do amazing things.
No one ever told us Baby Hulk wouldn’t be able to do things. I think they just said that he may experience some delays in areas but there isn’t a way to just look at a baby with Down syndrome and say, “oh this one won’t do much," and yet people do it anyways. Someone in the special care nursery at the hospital even found an employee of the hospital who had an older son with Down syndrome to come in and talk to us. I don’t think it did much to help, I was really in a fog for the first couple of weeks of his life, but it was a wonderful gesture and I think it did help Darling Husband. I am so hard headed I probably would have taken someone telling me he couldn’t do certain things as a challenge. Oh yeah? Watch this! I kind of feel like one of those crazy pageant moms as it is. I have changed so much of my life for this little boy. Weekly visits to the physical therapist, weekly home visits with Early Intervention. Because of them I am looking so much more into other things, like buying toys, instead of, oh this toy’s music isn’t too annoying, or this toy is fun colours, I think, how could Baby Hulk benefit from this toy developmentally? Just last week I totally rearranged the living room so he could get to the couch because he wanted to pull up on things. My living room does not look as good, the coffee table is beside the couch instead of in front of it so I can’t put my feet up anymore but as soon as I did it Baby Hulk was crawling across the living room and pulling up on the couch, and 4 days later he is already trying to let go and stand alone!
This year has been so exciting and different, and rewarding. Baby Hulk has slowed us down and opened our eyes to this great big adventure. He challenges us to do better and be better. While I am sad he is growing up so fast, I can’t wait to see where he will go! Happy 1
st Birthday to my Baby Hulk.
