Posted by: Hallie Levine | February 27, 2012

A Letter to My Jo Jo on her Fourth Birthday

 

Dear Jo Jo,

Today is a big day for you! Today you are four years old!

I remember your birthday like it was yesterday. I remember the excruciating pain, and cursing at the entire nursing staff at Stamford hospital for not getting me the epidural fast enough.  I remember yelling at your father for answering emails on his Blackberry and not paying enough attention to me when I was going through some gruesome contractions. I remember worrying that the dog would be so stressed out that I wasn’t home that she’d poop all over the new living room rug.

Then you came out, wearing only your birthday suit, and covered in blood and your own poop and screaming your head off, and boy did our lives change!

I was pretty much in shock right after you were born. I didn’t know much about newborns, but I was pretty sure you had Down Syndrome, just by seeing the way you looked and how quiet the doctors and nurses were in the room. Daddy was just beside himself, crying and taking pictures and insisting on following you all the way to the nursery so he could record every single precious moment.  For once, I was glad to see he was completely clueless about something, and that he could spend the first hour of your life just enjoying you.

We both cried an hour later, after we learned you had Down Syndrome and would need immediate surgery, and we both staying up all night that first night even after drugging ourselves out on Xanax and Ambien. It seems so strange to look back at that time, and think about how scared we were, and how our fears were nowhere even close to reality.

I remember when you were transferred to Columbia, and the doctors all kept telling us you had low muscle tone, and you freaked them all out post surgery when you ripped your feeding tube out of your nose. One of my editors emailed me later, “Johanna will be ripping proverbial feeding tubes out of her nose her whole life.” And that’s right! You’re constantly shocking so called experts by doing all sorts of things you’re not “supposed” to be able to do.

I remember the NICU nurses labeling you a “hellion” because you screamed all the time and refused to shut up. What did they expect? You were stuck in a tiny incubator covered in wires and wearing a hideous hospital gown. You wanted to be home in your designer Bellini crib covered with faux fur pink blankies and wearing your Ralph Lauren sleepers! Even at five days old, you were a Jewish Princess.

I can’t wait for our Mommy and Me birthday celebration, which will include an afternoon at the NYC ballet, a ladies tea, and a shopping spree at Lord and Taylor with the gift certificate Nana so thoughtfully provided. It’ll be just you and me, mother-daughter time, without any annoying farting, squawking, attention-seeking younger brothers.

I thought a lot about what to get you for your birthday this year. It’s hard, because, let’s face it, you are the girl who has everything. (Although Daddy did manage to find even more creative gifts for you online.)

We’ll do what we always do each year, which is make a donation to the Down Syndrome Treatment and Research Foundation in your name.

But this year, I’ve decided to do a little more. I’m also making a donation in your name to Planned Parenthood. That might seem random, but it isn’t. I’m really concerned about the scary wave of conservatism that’s washed over this country. I’m terrified of Rick Santorum and his inane statements about prenatal testing and homeschooling. If he ends up running the country, we’ll have to take advantage of Daddy’s Canadian citizenship and move north of the border.

But mostly, I’m frightened to death about what could happen to you. I want to make sure there’s enough funding available so you can get a FAPE (that’s Free and Appropriate Public Education), that more money—not less—is awarded by the NIH towards Down Syndrome research, and that when you get older you’ll have access to things like contraception, breast cancer screenings, and other reproductive health care when you need it.

So hence the donation to Planned Parenthood. Because although you may have Down Syndrome, you’re a female first and foremost, and attacks on women’s health mean an attack on you.

I love you my darling. Love you so much that I gladly go to battle for you against stingy school districts, un-PC comments, and all the religious zealots that are out there.

Happy birthday.

And hopefully this year the dog won’t eat your entire cake.

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Responses

  1. JoJo grabbed my heart the first moment I saw her in the delivery room at Stamford Hospital. I know deep down in my soul that JoJo will accomplish anything she wants. I pray for happy and healthy days ahead with all the love I have! Happy Birthday my special, wonderful first grandchild…

  2. I LOVE YOU JO-JO—-HAPPY BIRTHDAY

  3. Pure and utter brilliance. This post, your gift, your girl… all wonderful!


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