Dear Me. Down Syndrome Awareness Month 2015

One of the many missions of GiGi’s Playhouse is to change the perception of Down syndrome in our communities.  Most families you speak to who have a child with Down syndrome will tell you how their lives are better because of this person. How they have learned things they never knew they needed to and would not have if not for this very wonderful individual.  If you ask if these were the initial emotions a great many parents would tell you, no. Fear and uncertainty are still those initial reactions.  We are striving to take some of that fear away from new families receiving a new diagnosis and entering into a world that seems dark, scary and lonely. Today we have Beth aka Judah’s mom to share an amazing post with us.  You do not want to miss this!!!

Dear Me

To my former self:

No, not just you. Not just the one with a fresh bundle of pink loveliness in her arms and a fresh diagnosis…but also the pregnant you. The one who, by society standards, may too old to be a mom. The one who is tired, chasing a toddler and wearing ankle weights of worry. And to the carefree you. The one with a so called easy baby. The one who never worries, who worries less. And even the other you that seems like a memory clouded. You know, the one who’s biggest concern was finding something to wear and where you were headed that weekend (because you wanted it that simple)……..All of you, we need to have a chat.

First off, it is okay. You are going to be better than fine, so for goodness sake- stop with all the future predicting. Even when you are right, it’s useless. Like dad told you: worrying is like a rocking chair. It gives you something to do but gets you nowhere….and you are going to have a lot to do… so, stop all that rockin!! Also, try and remember that saying you tucked away into your inspirational Pinterest board:

Worrying is literally betting against yourself.

Why am I telling you to stop? I know you. You stay up late. Your pillow gets pummeled as you ponder all of life’s little pieces. The option weighing is all so much more intense than actual life silly girl, when will you learn?

And now to each of you:

To the new mommy. To the one who saw her son for the first time face to face and immediately knew. To that mommy who’s scariest prediction became her reality. To the one who’s sadness rocked her so hard that her body shook, her appetite went missing, and her thoughts consumed her with darkness. I am so sorry you went through that. It was awful for you and because of it, every nurse, doctor and anything “baby” was diluted. It all defeated you… so you thought. But it didn’t. You came back. You were enveloped in your grief and your vision was narrowed and negative. You did this for a solid week. Then you returned with vengeance. Don’t feel guilty about your thoughts. Don’t feel bad about staring at that clear crib in the hospital and wondering how you could love your baby. It didn’t take you long. I

still don’t know the why or how you did it. Your strong support system? Your familiarity with trauma? Your high school title of “Most Optimistic?” Either way, you nailed it. You came back in hot. You researched, reached out and started writing. Now you love your baby so much. You see his beauty as one that soars above all other things beautiful put together. Something else,… you needed to be sad. You had to embrace the debilitation in your soul. Everyone fought for you because of it. They deflated your biggest fears . And you became stronger and smarter. As tears fell right on your baby’s cheek, you pushed through to acceptance and you let go of judgment and prejudice. You are a better because of it. Also, all new mommies are scared. Use your new found powers to take care of them the way others took care of you.

To the me wearing the worry weights. I feel the worst for you. You spent your whole nine months in anguish. All you wanted was to be pregnant one more time. You told everyone how it’s the only do over we get in life. How we only graduate from high school once, buy our first new house once, hopefully get married once…but pregnancy gives you a redo if you want it. Another chance to soak it all in. You wanted that so bad. Then you ruined it by consistently suffering because you were pretty sure your baby would have Down syndrome. Well you were right. Now wait, before your heart starts sinking and you start wailing about how you knew your life would be ruined, it isn’t that way. Whatever that thing was that you feared isn’t here in the future anywhere. I’m not even sure what it was? I mean , you didn’t even know about possible heart defects or thyroid problems or neurological scares. You knew nothing of hearing loss, vision issues or a higher risk for cancer. I think maybe you were afraid no one would love you or your baby…that people would make fun of you both; lessen your worth. You couldn’t have been more wrong by the way. Maybe that is why even though you prayed and you prayed to have your baby be healthy, God (the jokester that he is) handed you a healthy baby with Down syndrome. Because there is nothing to fear my dear. Your baby is so loved it impossible for me to explain the enormity of it…but, after a short bout of self- pitying despair, you’ll see. And a short while after that, you will barely recognize the shallow pregnant woman hoping people wouldn’t think her baby was going to be unlovable.

Next, to the mommy who didn’t know better. To the one who’s little was reaching every milestone in the book before the book mentioned the milestone. To the baby that came before Judah. There is so much you didn’t realize. Walking doesn’t always happen on a baby’s first birthday and words don’t always pour out in complete sentences. You are more blessed than you know. Don’t take it for granted, slow the hell down, take in every new thing You see, with Calvin new things happen fast and they are fleeting. I know you think you are absorbing it all but absorb more, celebrate , and appreciate every move this kid makes; they are moves denied to many.

Lastly, to the young and naive me. To the girl who said she never wanted to get married or have kids (but probably secretly did.) To the one who thought mates were overrated and children were life stifling. To the girl who was a little afraid, a little bit broken and way too cool to for conformity. You will never believe this,… but you do all those things you swore you

would never do….and be thankful it all worked out for you, because this life is dripping and oozing with more nourishment than all your nights downtown combined. You found the most amazing man. He calms you, loves you and makes you finally see how your parents have done it for 40 plus years. You have teammate and a best friend. it is much like a perpetual sleepover (and I know how you love a sleepover.) I also know you didn’t want to put in the work , because, well, work is hard… But what they don’t tell you about work is: it’s worth every dirty diaper, missed hour of sleep, mistake made. You’ve made many and you’ve had it rough too. You lost too many loved ones, lived economic hardship, fell back three steps when you were just trying to get ahead one…but you know what? Life is so much sweeter with stuff. When you were little and your dog got hit by a bus and died, you said out loud how you would never love anything again…remember how mad mom got at you when you said that? Well, thank goodness you didn’t make good on that promise. Thank goodness that through all you endured, you kept that ability to unequivocally love. Thank God you knew yourself better than the words slipping out of your mouth. Because despite what you said, what you did was persevere. You never lost hope, you let God give you a piggy back ride and you loved….And because of all that, you have handled and can handle all things thrown your way. Judah is your reward for that. Your life is your reward for that… And you are living the very most magnificent version of yourself right now!!