The Screen Actors Guild Should Be So Lucky

October is winding down and much of the attention that the disability community is currently putting on Down Syndrome for the purpose of educating and empowering the general public will shift to some other worthy cause that deserves advocacy and systems change. But before the curtain closes entirely, I want to bring out onto the stage of this blog some of the people who have not only made our journey in the world of disability memorable, they have helped change the fabric of our very beings, helping to grow us up and grow us deeper.

You see, when you’re in the labor and delivery room with your new little bundle and you’ve just been given the news (usually in very somber and grim tones) that your baby has what’s called “Down syndrome” or Trisomy 21, and they (those bright and cheery doctors) begin listing off all the terrible, horrible, very bad things that may happen to your child as he grows up, they fail to mention one very key fact: in your adventures with your new baby you are going to meet some AMAZING people. I mean straight up, knock your socks off, dynamic, interesting, powerful forces of nature that will help keep your emotional tank filled better than any energy drink. When I first wrote that sentence above, I wrote it as “….they (the doctors) forget to mention…..”, but that’s not accurate. The doctors don’t forget to mention that you’ll meet some amazing people and make new friends and have deeper relationships because, and this is important so read it carefully: THEY DON’T KNOW. There, I’ve said it, the emperor has NO CLOTHES. Doctors and nurses and everyone else who gets any kind of medical training don’t learn squat about children with disabilities, so they bring these antiquated and stale stereotypes from the dark ages into the exam rooms that at best, leave parents with NO hope whatsoever for their baby’s future, and at worst, make them want to place their baby for adoption because they don’t think they can handle having a baby with a disability who’s going to have a life filled with misery and unending sickness. I wish they would say, “Your child does have a genetic anomaly, but it’s not the end of the world. In fact, I’ve got some phone numbers here for you to talk to some fantastic parents who already have these wonderful children, and they’re more than happy to help you in any way you might need. I have some expertise on the medical end of things, but these parents are the REAL experts on ALL things Down Syndrome”. But of course, that’s a dream, and then I wake up to the real and often bleak world that parents of babies with Down syndrome often face.

For reasons I will never fully understand, I was one of the lucky ones. When the visiting pediatrician was examining our son for one of the first times after he was born, I asked him what EVERY parent on the planet wants to know after their baby’s been identified as having “something wrong” with him, “What will his future be like? I mean, is he going to be able to do anything? Will he ever walk? Will he ever read?” I, like lots of other new parents of a baby with Down syndrome, had NO CLUE what Down syndrome actually was. The only things I “knew” for sure was that all of the people I had seen with DS had slanted eyes to some degree, and they seem to be shorter than the rest of us (except for me, because I’m short). And that was the sum total of my knowledge of Trisomy 21. CLUELESS. And our doctor, God BLESS him paused and said, “Well you know, no one really knows, certainly not me. But I think if you take him home, love him unconditionally, treat him like you would any other baby and provide lots of stimulation and learning opportunities, he’s going to be able to do quite a bit”.

So the first person I’d like to recognize on stage today is our first pediatrician, Dr. Bob Underhill. Because of his humble (he didn’t pretend to know the future of another human being) and hopeful first meeting with us, he gave us some courage that we could parent him and that our baby boy at least had a chance to have a good life.

The second person I would like to introduce is the single most important person in us being able to bring our baby home from the hospital in the first place. Without her, we wouldn’t have Hayden, plain and simple. We all have choices in life and most of us have more than we realize. But sometimes trauma brings our focus so inward because we’ve been devastated to the core that we don’t see what our options truly are. In Hayden’s case, he actually opened up the world for us. You see, Hayden was born to a different mom. We were a foster-to–adopt family going through the public child welfare system and a week before Hayden was born we had lost the baby of a sibling set who had been in our care for most of that year (the older sister had been placed back with the criminally negligent family a few months prior). Our baby had nearly died in the hands of his mother who had come close to starving him to death in the first few months of his life (she had done the same thing to four of her other children and had lost custody). Our case was an ugly mess from start to finish and the finish was nearly the end of both my husband and me. But when Hayden was born, exactly one week after losing the baby (placed back with the biological family) and on that baby’s exact birth date, something sparked inside me. I was able to get a few facts from another adoptive family who had heard about this special baby who had just been born, but that was about it. The reason I bring out this next person onto my personal stage is that because this woman, who happened to have an adult son with Down syndrome, spent an hour and a half on the phone with me on the evening we had found out about Hayden’s brith, and she proceeded to tell me how many opportunities babies and children with all kinds of disabilities have now days. She spoke hope, encouragement, light, life and pure joy over this new baby whom she had never met. And she knew whereof she spoke: Kathy was the head of early intervention in our community and therefor she had a broad perspective of all the help and support out there, but without her energy and enthusiasm, there’s no way we would have gone back to the hospital to meet that little man. From that point on, Kathy was a HUGE source of encouragement, information and pure love when it came to us being Hayden’s parents.

I try my best to live my life as a testimony to Kathy’s love and devotion to all babies born with special needs and I consider it my personal mission to be every bit as informative, positive, and life giving as she has been to our little family. There is not a week that goes by that I don’t think of her, pray over her, and thank God for putting her in our lives. Thank you Kathy.

The third person I’d like to bring out is my dad. Not just because he’s my dad and he loves me, so by default I would expect he would love my kids, it’s because of how open he’s been since day one of having this kind of baby grandson, who in his generation would have been whisked away to an institution never to be spoken of or seen again. Instead, we brought this baby home from the hospital, with NO guarantees whatsoever that we’d be able to keep him (by law, the birth mother has one full year to change her mind after relinquishing her newborn) and he willingly took the ride with us. Unlike other members of both sides of our family who have asked us what Hayden knows or doesn’t know (Hayden is largely non verbal), what his future’s going to look like (I broke my crystal ball), or why Hayden does the things he does (I can barely explain my own behavior much less someone else’s), he just accepts him for who he is, he reads his body language very well, and always assumes that Hayden knows exactly what’s going on and what’s expected of him. As a result, Hayden ADORES his “Papa” and is completely happy to be with him anytime he sees him, including the three years we LIVED with him (or as I refer to those three years from my dad’s perspective, “the three year occupation”).

The fourth person I’d like to bring out is Meg. Meg is one of the first moms we met in disability and I truly hope that each of you have a “Meg” in your life. With Meg I also want to bring out a couple of other women, who also represent hope and friendship. We met Meg at the very first parent leadership/education conference that we attended when Hayden was a mere five months old. We had signed up early for this conference, but shortly after finding out we had gotten in (there’s a long waiting list for this critically acclaimed conference) Hayden contracted Infantile Spasms from the pertussis vaccine. It’s a terrifying seizure disorder and some babies never recover. To say our very lives were hanging in the balance doesn’t even begin to describe how touch and go every minute of the day felt like for us. (We kept a calendar of Hayden’s seizures and there were days that he had clusters of up to 75 seizures at a time, each seizure representing another assault on his brain.) But we had signed up, so we decided to just go for it. I remember walking into the lobby of the hotel for the conference registration and there were two women standing at the registration table. I was carrying Hayden in my arms. “Awww, look Julie!”, one of them said, “Hand him over” I stood there looking around me, thinking they were talking to someone else. “You heard me”, the shorter one said, “I want to hold that precious little baby”. The taller one was beaming with pure unadulterated joy and happiness, like I had brought this baby across the state just for them to hold. And all of the sudden, as if these two women had fairy dust in their pockets, Hayden was a baby again, and a really cute one at that. He wasn’t a medical problem, he wasn’t a diagnosis, and he wasn’t a mystery. He was just a precious baby boy dressed in baby blue and I was pretty sure I wasn’t going to get him back anytime soon.

At some point during a break in the conference, another woman came up to us and introduced herself. She was Meg and she was with a fledgling group of a parents who had just formed a statewide on-line listserv for parents of kids with disabilities and she wanted us to join. Meg’s kiddo with a disability was about ten years old at the time, and they had also been through the ringer with doctors, diagnoses, school issues, and even an organ transplant. This was a mom who had been-there-and-done-that. Nothing we could say would scare her, shock her, or make her think that our “troubles” were insurmountable. We exhaled for the first time in weeks. Because Meg sat down at that table with us that afternoon, we met a bunch of her friends through that listserv and we’ve never looked back. Meg opened up a whole new world of sharing stories, asking a bazillon questions, learning all about special education law (the Individuals With Disabilities Education Act, also known as IDEA), and how to make the world a better place for our kids who have special needs. Because of Meg, my husband and I became passionate about connecting parents together and educating everyone on disability rights and we’ve made a bunch of fantastic friends.

The fifth “person” I’d like to bring out on stage isn’t really one person, it’s an amalgamation of some pretty wonderful people we’ve met so far along the journey. I can’t lie, having a child with Down syndrome is not always hunky-spunky. Some people still believe that people with Trisomy 21 won’t amount to much, aren’t capable of much, and are too different from the rest of the homogenous population to be fully human. Not everyone’s like that, but some are. You will have to deal with these people, and not just at the check out line at the grocery store. Some of these people will be your brothers and sisters, your in-laws, your own parents, some, who used to be your best friends, but who now just can’t seem to accept your child the way you see him, and the very teachers who have pledged to teach your children. It hurts. It’s wrong and people should’t be like that, but they are. You can’t change them, but you will take it on the chin on behalf of your child to shield him, and you will discover a protective mama bear inside you that scares even you some days.

But for every one of these Neanderthals out there, I’m convinced there are two of the “good guys” out there too. There’s the special babysitter you find who innately knows how to tune into your child’s inner “station” and tracks with him no problem at all. She finds creative and super fun ways to engage with your child and she always manages to include him/her with what she’s doing with your other kids. She puts Mary Poppins to shame and you don’t know how you lived without her or how you’ll gone another day after you’ve moved away from her. Then there are the people you see but don’t know: at church there the ones who come up to you with tears in their eyes thanking you from the bottom of their hearts for bringing your child to church with you every Sunday because they see him as a huge blessing. Of course you don’t necessarily notice these people noticing you because you’re too busy trying to not be a distraction to those around you, but there are those who sincerely LOVE seeing your child every week. Then there’s the hair cutting lady who isn’t fazed ONE IOTA that your son sounds like he’s having his liver removed with a spoon every time he sits in the stylist’s chair. She doesn’t a mind a bit taking 445 breaks in what should be a fifteen minute job. She’s patient and kind to him and manages to reassure you in the middle of it all that you haven’t spawned Satan’s child, and that everything’s gong to be okay AND that he’s welcome back any time. And they hand you a kleenex when upon hearing their kind words you cry like a teenage girl. Then there are the complete strangers we meet through no effort of our own: the people my son reaches out and touches in stores, sometimes taking old stiff hands into his and then smiling at them, or the complete strangers he sits next to in doctors’ offices and then starts “chatting them up” or singing to them a particularly wonderful rendition of Twinkle Twinkle Little Star, and they don’t act like your child is a leper. They welcome the unannounced “ABC song” and the uninhibited joy of just “being”. I know it’s true that I rely heavily upon the kindness of strangers in this world, many of whom I get to meet through no effort of my own, and I am supremely grateful for their kindness to both my child and me at every encounter.

The stage of my life is full of people who choose to see my son (and hopefully everyone else with Down syndrome) as a treasure waiting to be opened. Having a child with Down syndrome is certainly not the easiest path in life to take, not by a long shot, but I wouldn’t trade the richly diverse and deep relationships it has brought to our lives for one even one little chromosome. Thank you Hayden for bringing a wonderful cast of characters into our lives who have been far better friends than we could have ever dreamed for ourselves.

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