So, there’s a new law being written into Ohio and it is being called HB-135. It states that if you find out your baby has soft or hard markers for Down Syndrome, you will not be allowed to abort that baby. If you are like me, you would expect pom-poms , chanting, and overall grandiose gestures of gratitude from the Down Syndrome community. I can almost picture them, fists repeatedly punching the air, celebrating… “yes, all life is a gift.” …and,well my goodness it sure is, I have seen quite a different concoction of reactions.
This is a button that if pushed may singe your finger. One that separates elephants from donkeys. However, here is the a view from some of the very people who hold a baby or have a live-in roomate with DS. You do not get to decide if we can handle the blow of our dreams being shattered. You do not get to pick if we are: able to, concerned enough, in love enough, or invested enough to survive our lives being altered.
I do not wish to speak for the masses. There are many of my dearest out there who have embraced their special needs baby because they embrace their religion, their morality and pureness of soul. These are the kind of people who walk so closely to purity that they reserve judgement for no one.
This is not all of the people though. The cards do not always play out so neatly.. Dreams, desires, ego, family , relationships, pasts , finances and do I dare say, etcetera happen? Every person cannot embrace. People have stuff. So, while I am grateful and borderline ecstatic …I never had to make this choice. I chose not to choose. And, because, Judah is the most glorious, life altering thing that has ever happened to me, I want to grab a megaphone and shout “choose it choose it.”….but I can’t. Bobby and I chose it. We fought through our tears and grief-stricken ache. We rose above it to unbelievable elation…but we picked it. We agreed on the pumpkin, plucked it from it’s patch and proudly post pictures of all his exquisiteness. How can someone else pick it? Only we know the turmoil that we fought through to get to where we are now. We love this boy with every cell, in every organ, of our very being, and we love this lovely life we’re building…but we can’t elect anyone else’s life the same way we wouldn’t pick their pumpkin.
Truth be told, when I convinced myself that my baby had Down Syndrome early on, we had “the talk.” Bobby was all good, all in. Cut and dry, a life’s a life. I weebeled. I wobbled. I probably procrastinated with purpose. But what if I didn’t? What if I made the choice to be the one who chose? Bobby and spoke of these what if’s last night. Not as in what would we do without JuJu. I think it’s pretty clear how crazy in love we are with this human We would be losing out on so much without him…but, what could’ve happened to our marriage? There would have been possible regret there. Resentment might have shown up. The kind that sticks around like that last pile of snow in April. The kind that could start a crack in the wall, the kind that could ruin everything….and that’s when there is love involved.
Well, now think about he repercussions when the government appoints you your choice, when the decision doesn’t come from a conversation but rather a mandate? It worries me.
I’ve read and read and read on the topic. I’ve spent late nights googling and getting the information right. Because, frankly, I need to do this subject justice. There are many people who read my words and I prefer not to piss anyone off. Also, I want to be a voice of information and joy. I never intend to shake a finger.
Okay. So, here’s the meat and potatoes of the meal. It seems that this law HB-135 is pretty much unenforceable and the woman herself cannot actually get in trouble; just the Dr performing it. For the Dr. its a felony. It kind of makes my above point tongueless, tongueless but true. North Dakota already has a similar law, however, it applies to all genetic disabilities not just Down Syndrome. Nevertheless, this law has proven to be unprosecuted. First off, a woman can just claim she doesn’t intend to keep her baby for a different reason, besides genetics. Also, because of the only law I actually remember from high school; Roe vs. Wade. This is a federal law, therefore, allowing women to just travel to a different state. So why? That’s what I kept asking myself. Why is there so much trouble going into a law that cannot be carried out? My first heartwarming thought was a political environment so warm and fuzzy that it was finally ready to embrace all of God’s creatures and treat them equally. To my dismay, I found out something quite different. The people who are making this law are using it to slowly poke holes in the infamous Roe vs. Wade case. They think if enough holes are poked, maybe they can see straight through to the other side. This might be what hurt me most as I dug for answers. Lives like my baby Judah’s aren’t so much being validated….they are more like a political pawn. Ouch!!!
To make matters worse? A beautiful NEW law called the: Pro-Information Law, is unraveling because of this. The pro-information law, which was born in just 2014 , sets out to do just as it’s name suggests. It is to tell those with a new diagnosis about all of Down Syndrome’s components; correctly. It was only a couple of years ago when Dr.’s were telling women that their child would have no life, that a child with Down Syndrome would in fact be a burden. Crazy right? This law serves to inform and to not push abortion (which still happens quite often even though it’s illegal.) This case personifies “knowledge is power” and it’s being bullied by an authoritative voice that is making decisions for us. It seems that by taking away the information piece and replacing it with a requirement, we are actually be making matters worse not better……and oh, it was starting to feel so much better.
Well, I must step down from my soap box for now. If you need me, I’ll be fighting the good fight. Helping people to accept and love others with all abilities. I won’t be doing it through intimidation and mandates. Instead I choose to enlighten others through a peek into Judah just being Judah…and he is a force much bigger than law. That I have seen with my very own pumpkin picking eyes.
You were born into this world and you were our everything. You made milestones like it was your job and you made friends like a mayor. You made it all so easy. Then suddenly I was pregnant, and just as suddenly I wasn’t again.You saw the earth go around the sun just once and already had to watch me do extreme sad.
Before too long, you witnessed me pregnant yet once more and you had and to notice that I was rocked with worry. Your world got rolled 9 months after that. You had to share the limelight with your new baby brother and tread water through what we saw as tragedy. You survived more turmoil as Christmas was stolen from you like only a grinch would do. You handled life like a boss as mommy and daddy took turns living “up high” in the hospital with your sick, little brother you barely knew. Just three short years and you moved from being everything to a part of something. Your reaction was finding gold. I watched your spotlight turn into a flood light. You handled so much so graciously.
Your doggie went to heaven and you just don’t care to let his memory go. The only home you’ve ever known is a Skelton and we’ve whisked you off to a brand new land. You’ve left your toy bringing, snack sharing, lovely Miss Maureen and instead we’ve sent you to the structure that school brings. Your brother is a town celebrity.You have walks in his name and people join together like it should be your birthday. Judah’s teachers come. They invade your toys and cheer about things you did two years ago. The life you know is a flipped mattress; a sudden move to Holland… and, I get it kid….
You cry out sometimes because your feelings are hurt, your life a little bit lost. I want to wrap a hug around your heart. I see how you endure and embrace. Other people see it too. You my dear son are the hero in the midst of this loveliness. Your amorous adaptability makes you an endangered soul….and, I know you . I know you like I know where my shadow will be. I know you will be okay, and you will be empathetic. You will be brave, kind, compassionate and gracious. You will be successful, adaptable and of course handsome. You will be smart, considerate, and sweet. You will be so many great things… but today, today, you may be swirling, spinning, straining… And so you must know that It never leaves my brain how absolutely precious you are to our family. You are a crucial piece to the circuit that completes this family’s charm. I will never stop reminding you of this because it’s important and it is so. Please know, you still are everything. You are everything that you are supposed to be my darling baby boy.
A special thank you to those of you who reminded me that it was so very important to write this piece.
As the nine month marker approaches I feel I should let you know where I am at with all of this life altering, joy finding business. We are 3 months away from Judah turning one and I spend much of my days relishing, staring, snuggling and full belly laughing. In some ways, I have just come to the realization that I have another baby. I gaze in disbelief and I find myself saying ” I can’t believe I have you.” At the end of this ritual there is almost always a tight squeeze involved, followed by too many kisses to count….then a few trickling tears , or at the very least, eyes half full.
I’m wistful about some things… like how I wasted one single second of my precious boy’s life because I was too preoccupied with things like “if people could see it” or what our future would bring. I hug my baby and tears explode because I can’t believe I even thought about not wanting him for one fleeting second and I am ashamed that I felt so sorry for myself. I am in a bit of a state because I want a do over damn it. I want a redo in that hospital room. Kelle Hampton said she was able to do it a year after Nella was born (click here if you don’t know who or what I’m talking about) I am going to try my best to get back in my birthing room. I am going to bring my Judah, Bobby and all our maddening love. We are going to lie on that hospital bed and give this baby the kind of welcome he deserves! We are going to sing him happy birthday and spill joyous tears only; sadness will not be allowed in the room that day. He is going to have the biggest birthday party. One of gigantic proportions.
I want this new memory to erase the ones when I was unsure of how to love my baby. I know it will never work. I know the pain had to show up first to the party; before the joy could come. I also know that back then glimmer poked through darkness. Glimmer that had to do with God, with our love for each other, with tales from others promising joy. We couldn’t see it then. We knew it would come but had no idea how it would make its way to us. I imagine it’s much like being stranded and waiting for help to come. But we are here. This boy has changed us and now it is time to pass the torch to the new unsuspecting mommies and daddies. I see them out there I see them on Instagram and have even had people reach out hoping I can help. It makes me cry just thinking about them. Not because I feel sorry but because of how I wish I could hug away their worried souls. I want to take away their heartbroken tears one by one and carefully console ” I swear you won’t need these.”
We can’t go back. We can’t white out all those tears. I know I can’t. I don’t even know that if I could, I would. I have learned so many lessons. I have learned that God knows what he is doing so just get out of his way. I have learned that you will get better and until you are, there is so much humanity out there to support you. I have learned to never, ever, ever judge anything again just by what you’ve heard. I went from painstakingly petrified to waking up everyday and jumping out of bed like a kid on Christmas morning, getting surprised with a puppy and winning the lottery all rolled in one. Every single morning I’m greeted with the greatest of grins and every morning those grins erase doubt and uncertainty.
This is where I’m at. I don’t care anymore. I don’t care if people can “see it.” But let me tell you something, people do see it. In fact last week in one day, two people approached us. They nostalgically recounted how their children with Down syndrome were grown now and how they (like most mommies )miss the baby days. Both moms gushed unabashedly of their child’s gracious souls, their accomplishments and what a wonderful gift their children were. The second time it happened to us that day, I cried right there in the toy aisle of Target… and as Bobby hugged me, I noticed his eyes were a little damp too. People see it. They seek you out and I don’t care if that happens everyday for the rest of our lives.I don’t care if my son lives with us forever or gets married. I don’t care if baby Judah goes to college someday or pushes all of the boundaries out there waiting to be pushed like a big red button. All I care about is that smile, that exaggerated happiness that warms me down to my tippy toes. As long as he keeps that. As long as he does whatever keeps him that happy than this little momma is all in. It puzzles me a little, Isn’t this the wish we should have for all our children, the world, ourselves? That freedom from pain, exaggerated love and lightness.
I met a boy with Down syndrome at a wedding who had a sparkle that makes me envious. CJ sung Uptown Funk with the gusto of a sold out show. He didn’t care what people thought, how he sounded, who was watching. He just sung it because he loved it and he was in a moment. My goodness he was something. He made me speculate…maybe we’re the ones that have it all wrong… like my dear friend Bridget once told me,” maybe we are the ones MISSING the chromosome.”
Whatever has happened to my life. Whether the change came from me, Judah has magic or God has kissed our family, I don’t want to go back. I am just fine crying when I look at my baby too long or in the middle of Target. I am fine with all the what if’s, the limitations, the fight to give my son a fair education. I am just fine with a different retirement than Florida ; a different path. I am fine with all of it thank you very much and I wouldn’t change a single minute.