The Day Hayden Was Born, I Mean Really Born

Today marks the first day of October which, to a small percentage of us parents, also marks the first day of  National Down Syndrome Awareness Month!!   I will probably get into the more technical science of what exactly Trisomy 21 is in a later blog post, but for now I want to focus on our son Hayden and his miraculous birth that made us a family.   Oh whatever, I just changed my mind:  SPOILER ALERT!!!!  Trisomy 21 means that on the 21st gene our kids have an extra chromosome.  So instead of the typical 46 total chromosomes that most people have, our kids have 47, and that extra one is on the 21st gene, hence the name “Trisomy 21”.  There, mystery solved.  Let’s move on.

Okay, back to the matter at hand.  By the title of the post, you’re probably thinking I’m about to tell the story of the day Hayden was born;   how we had known about him and his Down syndrome-ness through a prenatal test and we were all ready for him and we had already told both sets of our parents to help prepare them for the life about to unfold.  Or the other scenario; how we had NO idea that he had DS until that moment in the delivery room, and then we had to adjust our thinking and brace our families for our soon to be very different life.   Well I am going to tell you about the day he was born, but not in the way you would think.  Today I’m going to share what I haven’t really talked a lot about before, and that is the day that Hayden was really born;   the day that I became aware of him for the first time, which was weeks before he actually arrived here on earth.  But to tell that story I’ve got to back track a little and so be patient.

It was the summer of 1998.  We had been foster to adopt parents to a sibling set (an 18 month old girl and her four month old baby brother) since January of that year and things were NOT going well.  The judge had ruled just six weeks after the kids were placed with us that since the birth mother hadn’t tried to harm the daughter (unlike her infant son whom she had almost successfully starved to death; when he was admitted into the hospital at four months of age he weighed just nine pounds, after having been born at 7lbs 9oz), it would be perfectly wonderful and FINE, no better than fine, the judge said it would be BEST for that little girl’s life that she be placed back in the custody of the two people who had tried to kill her baby brother and back in the care of a woman whose record of losing custody to her four previous children in Oklahoma was well documented (one of her sons was permanently disabled because of her efforts to starve him to death as an infant.  Ya, THAT kind of person was exactly whom the judge thought deserved at least two more chances to parent).  I’ll refer to the baby boy we had in our custody as Timmy, and to his big sister as Susie just to protect the innocent .  (Actually I’m just playing make believe:  like a real writer who had actual readers might be legitimately concerned that one of her thousands of readers might be able to put two-and-two together and know who the children were.  We all know it’s just my mom who reads this, so never mind!  Oh wait, she doesn’t read this…..it’s just me in the forest listening to the trees fall, and boy do they make a racket!!!)

So there we were:  living in a daily nightmare that was unraveling us from the core out.  I wish I could paint a prettier picture of our spiritual and emotional maturity, but we were nowhere NEAR  being able to accept “life on life’s tragic terms” at that point.  But we still had Timmy with us, and that was GOOD.  By the summer he was regaining much of his health and was by medical accounts, back in the “thriving zone”.    He had lost much of his vacant stare and was connecting with us, his parents.  We ADORED him.  We treasured him.  He was completely bonded with us and we were his life……..that is when he wasn’t forced to attend multiple visitations a week with his biological parents at the local department of social services visitation center, where, by their accounts things were going just grand because his parents and grandmother fed him (obscene amounts of sugar;  the paternal grandmother was a certifiable wing nut from the word “go” and was there meddling at every turn).  That their choices of food, and toys, and activities were inappropriate didn’t raise any red flags, and we could see that the same judge would make the same decision with Timmy that he had with Susie.  Gut wrenching doesn’t even begin to describe the daily tsunami of nausea and overwhelming helplessness we felt as we saw the giant locomotives approaching each other on the track.  On one track were we, who hadn’t yet fully digested and memorized our state’s  children’s welfare code (that would come shortly after this nightmare), and on the other track was a judge who didn’t give a rat’s ______ about the written law or a child’s well being.  Right behind the Judge/Train engineer sat the department of social services case workers who were anxious to put a check mark in their column of “unified families” back on the dry erase board at the office, so they didn’t care what happened to the children either.

But there we were, trying to live life to the best of our abilities at the same time it was unraveling.  My first big clue that something was afoot in our lives was when Timmy and I were in the car one afternoon and I remember it clearly; we were turning left onto Elizabeth Avenue, the sun was shining, and Timmy was in the backseat in his car seat when out of nowhere I heard a voice inside say, “Down syndrome.  What about a baby with Down syndrome?”.  “Hmmm”, I replied in my mind, “Ya, sure.  I don’t have a problem with that”.  I let the thought pass through my mind as we drove down the street, no doubt on our way to another agonizing supervised visit.  I should say here and now that I responded the way I did to that voice in my head because I had NO IDEA what Down syndrome was, not because I was some kind of noble saint or expert on kids with disabilities.  At that point in my life I didn’t even know kids HAD disabilities.  Never even occurred to me (ya, can you say, “living in my own world”??!!).    The “facts” I did know were sketchy at best.  I think I remember believing that  1) “they” (those unidentified people out there who had this “Down syndrome thing”) tended to be on the shorter side and that 2) they had slanted eyes.  See, I’m not exaggerating!  I really was the captain on the Clueless Boat!  But I think by that point in this agonizing process of becoming a family I was beginning to give up my expectations for how life was “supposed to be”.  I may not have known what Down syndrome was, but I was thinking it HAD to be better than the daily hell we were all enduring.

The summer progressed.  No, I lie.  Time marched forward with the plodding dread of the Grim Reaper.  It was horrible.  Unification with the birth family was a foregone conclusion by now.   The judge had ordered at the beginning of summer that the paternal grandmother undergo a psychological evaluation, which she failed soundly.  Unfit to dress herself, much less be a support to an adult son who watched horror movies 12 hours a day and had a vacant death stare in his eyes, and had married a psychotic animal, was essentially the conclusion, with everyone in town who knew her agreeing (including all the social workers attached to the case).  But by the beginning of August, the grandmother had found herself a new psychologist who declared her  “fit to parent” , and the judge was eyeing the open chief district court judge position.  Time to tidy things up and send that now healthy and beautiful baby boy back to the people who had tried to kill him.  And so they did.  A week before Timmy’s birthday, which is August 31st, he left us.  We were shattered, but at the same time filled with eight months of beautiful memories and lots of sweet giggles, laughter, bubble baths, and time spent together as a real live family and no one would ever take that from us.

A week later, on Timmy’s birthday, a baby was born.  He was born to a mom who wanted him to have a great life, but knew that she wasn’t the person who would be able to give it to him.  So she gave birth and then made the hardest phone call of her life.  Two days later we came back into town after a week of camping above tree line to try to deal with our grief.  Right after we unpacked our camping gear, I got a phone call from a friend about a mysterious new baby who had just been born in a local hospital.  I slept on the information that night, not telling my husband anything because we were both so raw with grief.  The next day while my husband was at work, I got brave and called our case worker who said “yes” to us checking out this new baby.    Then I had to get even braver and tell my husband about the baby.  Well, his answer surprised even him I think, because he was totally open to at least seeing the situation and learning more.  The following day we saw this new baby and it was love at first sight.  Deep, overwhelming, I-can’t-wait-to-bring-this-precious-baby-home, kind of love.  I still had NO CLUE what Down syndrome was.  I really didn’t think this baby looked any different, maybe a little slant to his eyes, but that could be his regular ol’ genetic make-up right?  He was given oxygen at birth, but even that’s not that uncommon in our Rocky Mountain state.  So I was still very clueless about this “Down syndrome thing” and now I was hopelessly in love.   And all that flood of emotion was before I held him for the first time and rocked him in the hospital’s nursery.  Once that happened, I remember clearly thinking, “You are going to have an amazing journey and I don’t want to miss it.  I HAVE to go with you on your path!!”

So when people ask me if we knew Hayden had Down syndrome before he was born, I have to smile and say, “we weren’t surprised at all, we were just very glad when he finally found us”.

 

If you’ve read this far, you know that October is National Down Syndrome Awareness Month. If you are pregnant and have been told that you are likely to give birth to a baby with Down syndrome, please visit the National Down Syndrome Society at www.ndss.org , or the National Down Syndrome Congress at www.ndsccenter.org for more information. If you feel led to adopt a baby or a child with Down syndrome, please visit The Down Syndrome Association of Greater Cincinnati at www.dsagc.com.

If you are an expecting parent or have just given birth to a baby with Down syndrome, please only speak with parents of children with Down syndrome in order to gain the best, the freshest, and most candid advice, stories and technical information about Down syndrome.  While we have been extremely fortunate to deal with caring and respectful doctors throughout our son’s life, it is sadly NOT the case for many of our friends who have been heartbroken and crushed by members of the medical community during those critically important first few days and weeks of their babies’ lives.  You deserve compassion, honesty and the truth about having a child with Down syndrome, and in my opinion, that comes best from parents who live it every day.  It’s not all sunshine and roses, but having Down syndrome is NOT the death sentence that many in the medical field still make it out to be today.  Children with Down syndrome are VERY likely to grow up to lead very “normal” lives and become contributing members of their communities.  This is a truly sweet life and it’s FAR better than ANYTHING I could have EVER dreamed of for myself, and is certainly better than I deserve.  Please add me to your list of supports if you should ever want to talk with someone.

 

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