It’s hard to believe that it’s been one year since my whole life changed, since I joined the awesome, exclusive club that is Down Syndrome parenting, but I woke up this morning to an alarm on my phone telling me that Sarah’s birthday is tomorrow, so I guess it’s true.
So much has changed. So much has happened. I am overwhelmed by all that has happened. Overwhelmed and joyous.
I can remember a year ago yesterday feeling so unsure, so scared of what our future held. I can remember feeling like my whole life was over, like the negative could never outweigh the positive.
How wrong I was! In Down Syndrome, now, there is no negative. There is positive, and there is a sense of overwhelming normality. But down syndrome itself doesn’t have any negative consequences. At least, not for us.
We had a big bash planned for Sarah’s birthday but given the new circumstances, we figured that she might pull a Zsa Zsa if we tried that, so we’re having a low key time with her two favorite furry friends and her three favorite people (that would be her daddy and her grandparents. I’ll be there too, even if she doesn’t want me there).
Silly though it may be, I’ve been planning her birthday for months. How no matter how we ended up celebrating,
So how did we end up celebrating? We went out for dinner (more for the adults’ benefit than Sarah’s, of course!). Sarah had her first taste of juice and some formula through an NG tube 😉 and wasn’t interested in even smashing her cake. Oh well–maybe next year! After dinner, we all came back to the apartment. Dec and I both wrote Sarah letters and asked our parents to do the same. So, after a nice bath and getting into one of her new, cozy pairs of pajamas, the princess settled down on her throne (okay, okay, her Bumbo seat, but it’s the same thing right?) and we read her her letters, and then she got to fall asleep in her favorite spot–our bed.
I thought I might feel sad today, because of how far behind she is, how far she has to come, how I know subconsciously that she’ll never “catch up”, but you know, I don’t. I feel proud of how far she’s come. I feel grateful to be her father. And the best part? I didn’t think of that nasty c-word all day. I think it’s the first time I haven’t since she was diagnosed.
So, how is Sarah doing at a year old?
–She weighs 15 pounds 8 ounces and is 25 inches tall. She is still right smack dab in the middle of the growth charts. She may have lost a little weight since starting chemo, but this is what she weighed when she was admitted to the hospital.
–She is babbling, rolling, and exploring lots! She is just starting to sit for short periods, but she’s become very aware of her surroundings recently and has started reaching for toys and putting them in her mouth. Lots of mouthing!
-She understands a lot of signs (probably 15-20) but isn’t signing yet.
-Prior to her medical challenges, she was eating pretty much everything we eat in smaller portions. She has never had a problem with food!
-She recently started sleeping 8-9 hours a night without waking. Thank GOD.
Happy Birthday, sweet Sarah. We’re so lucky to be yours.