The big issue is, I wish I didn't know ANYTHING about Prader-Willi. I wish we could rewind to before we got the diagnosis. I wish I just didn't know. I think I was happier thinking she might be diagnosed with benign infantile hypotonia. That I could have dealt with.
Don't get me wrong, I can deal with PWS, I just don't want to have to.
My lovely, amazing new friend Mandy, and her daughter Sophie, who also has PWS, was over yesterday. We were talking about how the PWS clinic went the other week. Both of us left with our heads spinning at everything bad that is supposedly in our future. Because I know what is allegedly going to happen, I look at Ellie, and I am so fucking conflicted.
I see a girl who already defies the odds. Fucking odds. She has defied so many. Two miscarriages in a row before we got pregnant with her. All my pregnancy issues, all the times they told us "I'm sorry, but it appears you've had a miscarriage". All the times my heart dropped to the floor and shattered, only to have her fight her way through everything. She made it to 32 weeks, and she came out screaming. Prader-Willi babies don't cry at birth, they're supposed to be silent. She screamed, which made me cry, because I was so sure, so sure that she was going to die. The moments before her birth were the most frightening of my life. I didn't want to push her out, because I was so sure she wasn't going to live. But she came out screaming, and I cried.
She was here, and she made it known.
I don't need to recount the time in the NICU. She was on her own timeline. Thinking back to leaving her there, every day, for 63 days makes me feel sick to my stomach. I can't believe how much time I missed with her, how little she was held, how no one that truly loved her was with her around the clock.
I know it doesn't help to dwell on things passed, but if I had to do it over again, I would have asked so much sooner to have her come home with her ng tube. She spent so long there, and when she came home, she started doing so well. She's been off the ng tube for 46 days, they told us in the NICU that it would likely be TWO YEARS before she ate on her own.
I know she has PWS, I've seen the stupid piece of paper. 46xx.ish del(15)(q11.2q11.2)(SNRPN-). I have it committed to memory. The stupid deletion that makes her different.
If I didn't know, I wouldn't look to the future with dread. I would just look at her, NOW, and see how far she's come from being a tiny nugget attached to tubes and monitors, to the most beautiful baby girl I have ever seen in my life, giggling, smiling, in love with her reflection, and absolutely in love with her family. It's hard though, the unknown is hard. The thought of her turning into what the other parents say she will - that kills me.
I've read about people giving up their toddlers for adoption. I've read of kids being shipped off to group homes at 13. I've heard about parents that just can't handle everything the disorder encompasses. The food, the hunger, that pales in light of the *other* things that rules these kids lives, and make them, the most of them, very difficult to handle.
I am terrified.
And yet, I have this little fighter, who has already proven so many people wrong. When she cried in the middle of the PWS clinic presentation, I could feel everyone staring at us, their babies don't cry.
I won't be going to another PWS presentation. I am going to stop my own personal researching. I will start Ellie on the growth hormone, if that's what the endocrinologist wants, but I am not going to kill myself stressing about things I can't change.
Ellie is going to be fine. SHE IS GOING TO BE PERFECT.
Hear me universe?!?! SHE IS GOING TO PROVE YOU FUCKING WRONG.
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