Nothing To Prove And All The Time In The World To Prove It

  For National Down Syndrome Awareness Month there are all kinds of blogs and essays written FAR better than anything you'll ever see here, spouting the accomplishments and feats of people of all ages who have Down syndrome (the extra chromosome on the 21st gene that's also called Trisomy 21).  I LOVE that people are bringing attention to people who have DS who are out there just livin' life: going surfing (on my facebook wall today), riding horses, swimming SUPER crazy long distances (Karen Gaffney of Portland, OR), teaching a Kindermusik class, working independently at jobs out in the community, riding city buses to and from their homes, etc... 

   While I completely applaud and am 100% behind the efforts to bring attention to the accomplishments of those who have DS, I think we can sometimes portray an image to the outside world of "Look what my son/daughter is doing:  he's (she) is ______________, he's in "such and such"activity- isn't he great?  He has VALUE!!"  Don't get me wrong, I do NOT in any way fault ANY parent for tauting their child's accomplishments and I completely understand why the parent of a child who just a generation ago would have been institutionlized from BIRTH would want the entire WORLD to know what all their kids can do despite the challenges of having an extra chromosome.  My concern is that sometimes we as parents of kids with disabilities are out there CONSTANTLY (and very subconsiously in most cases) proving that our child has value as a human being because she's in a hip-hop dance class, or he sings in the choir, or he's in a play at school, or he "reads at grade level" as if to say, "See, he's not that different.....he's in the cool club, even though he has a disability". 

   Much of the examinations we feel from the outside world come from those who used to be, or should be the closest to us; friends, our own brothers and sisters, our parents and extended family members, rabbis and pastors, etc....  Last year my best friend was at a wedding reception and was seated at a table with some former friends.  I say "former" because my friend and her family just don't have a lot in common with these people anymore, but before my friend's daughter was born their families did lots of things with them (my friendn's daughter is a year younger than Hayden).  These are folks who are pretty bound up in the world's game of "what will "so and so think?"" and they act and talk accordingly.  At some point during the evening as the families were talking about their kids and just doing the normal chit-chat-thing, the woman turned to my friend and said, "Well can Claire READ?" (names have been changed to protect the innocent from being associated with this blog), as if to imply, "Can she at least do THAT?".  Now, in my friend's case Claire can read, but not because her mother's been grilling her for years or shoving phonics down her throat since she was two (that's more my striving style than my BFF's developmentally appropriate method).  What really, really struck me about that whole exchange was, well what if Claire COULDN'T read?  Would she be pitied?  Would my friend and her family be judged because of it?  Would Claire still have value as a human being or did Claire just go up a notch in the eyes of their former pals because she CAN read?   To my friend's credit she said "yes", but in such a way that the conversation wasn't pursued.  My friend can not STAND striving and can see right through the schemes (it's no small miracle that we're friends and I'm the beneficiary of some serious wisdom from this woman).  I just see a lot of striving in the disability community, as if we have to prove to the world that our kids DESERVE to live.  And thanks to Roe v. Wade and the fact that over 90% of babies identified (correctly or incorrectly) in-utero as having Trisomy 21 are aborted, maybe we DO have a lot to prove.

  So today I take a few minutes to celebrate Hayden for being Hayden.  He's 13 years old and he LIVES for music.  Right now he's TOTALLY into the TV show "Yo Gabba Gabba", although his first love, Signing Time, is a very close second.  He reads and recognizes some words and his current favorite books are Dr. Seuss's "Hop On Pop" and "The Dr. Seuss Songbook" (both from Jeff's and my childhood collections).  He can spend HOURS in his room reading his sign language cards.  He loves to play on his sister's old violin.  He's learning to catch a ball and he rides his bike (with training wheels) under diress.  Within weeks of moving to L.A. he heard Vin Scully calling a Dodger's game on TV and he's been a Dodger fan ever since.  We have pictures of him taking batting practice, ala Manny Ramirez, in the reflection of our siding glass door and it's pure joy.  He reads many words, signs even more, and he can hear and understand a staggering amount considering he has severe to profound hearing loss.  Most of the time when we go through our reading words he signs what I say, even if he doesn't "read" the word for himself"  He is CONSTANTLY learning, but often times doesn't want you to know what HE knows.  It's all a game to keep Mom and Dad guessing!

  Hayden, thanks for being you!  Thank you for teaching ME that a person needs to be treasured and honored because God made you special and He loves you very much!!  Everyday you teach me that you have nothing to prove and that I'm the one with the unwieldly baggage.

The Ironman

  One of the things I celebrate during National Down Syndrome Awareness Month is Hayden's strength.  He's 13 now and Jackie Chan has nothing on how he can instantly turn you inside out with a quick twist of a finger (he pretends he just wants to hold your hand and then WAAAHHH, he's twisting your finger and you're begging for mercy), but I'm talking about an entirely different animal.

  I'm talking about Hayden's core strength of character and resolve.  Maybe he somehow knew he was going to have to endure countless tests, surgeries, ear exams where he had to be held down by an entire clinic staff just to see inside his ear canal, EEG's, a spinal tap, and more blood draws than I count.  I honestly don't know how he's done it all.  I should, I mean I was there for everything, but much of it is a blur to me now, probably because I don't ever want to revisit what I hope will always remain history.  It takes my breath away to think about what he's gone through; like the time when he was six years old and he had a central line in his chest to deliver some of the most potent drugs known to man for his life-threatening ear infections and he pulled the line out of his chest first thing in the morning.  Ya, like the line had been SURGICALLY placed into his chest (full anesthesia--big operation) and the surgeon and post-op nurses assured us that THE LINE WOULD NOT COME OUT......because it's clamped INSIDE of him.  Two weeks later he PULLED it out.  Crazy kid.  Did he cry?  NO!!!  Did he care??  NO!!  Was my husband, who discovered the trail of blood drops across his bedroom floor, curled up in a fetal position turning various shades of grey??  YES!!  And you know what happens on the day you're scheduled (or NOT scheduled as in this case) for surgery?  You can't eat!!  So before we could pack him full of breakfast, we quickly called our doctor, told him what was going on, made arrangements for our daughter to spend the day and night and a friend's house, and made the trip to the hospital where he would have the surgery 40 miles away.  Here's what totally blew me away about Hayden ALL DAY that day: he didn't once ask for food or water, or whine, or protest anything.  It was like he knew something was up.....he knew in his heart of hearts it was going to be a VERY L O N G day full of waiting, pre-op procedures, blood draws until finally being admitted to the hospital.  He blew me away with his calm resolve.

  There are SO MANY things I wish I could tell that parent who has just been told that the baby they're carrying may have Down syndrome ("may" being the HIGHLY operative word here as many in-utero tests turn out to be completely wrong) or the baby they've just given birth to has Down syndrome.  But I think the biggest news I have for them is that "It really IS going to be OKAY.  Your baby is STRONGER than you know and stronger than you ARE.  No matter what his/her future is, he/she will get you through it".  Does that mean it's going to be smooth sailing for that baby born with Down syndrome?  I wish I could say yes, but of course I can't. Does every baby born with Down syndrome have a path of trauma and medical difficulties in front of them?  Nope, some babies don't have any major medical issues.  But I do know beyond a shadow of a doubt, that no matter what lies ahead, our kids have a strength that we can only hope will rub off on us. 

  With Hayden, beng born deaf instantly put us on a mission to find out why and that led doctors and specialists to discover some pretty catastrophic ear infections just a little too close to the brain for comfort (think encephylitis and permanent brain damage), which led to eight reconstructive ear surgeries and tympanomastoidectomies.  We also had to figure out why he needed O2 at birth, which turned out to be a small hole in the left ventrical of his heart (not uncommon for babies born prematurely or babies with Down syndrome, especially at high elevations), which was surgically repaired when he was four weeks old (in the scope of heart surgeries, the "PDA ligation" as it's called, is relatively minor, but it's still your newborn baby with a hole in his heart being put completely under anasthesia, where there are NEVER any guarantees).  Hayden contracted Infantile Spasms when he was six months old and it is ONLY by grace that he is here with us today.  I will probably never fully understand what it's taken for him to fight to regain all the development and core of "who" he was before the seizures took over.  That is strength.

  I'm sincerely happy for people who've worked hard enough and consistently enough to earn a trophy for anything, but inside I will always know who's the strongest of them all, and they don't make trophies big enough for that.

Axl Is In The House

  Thanks to a friend of mine who shares my passion for the tv show "Everybody Loves Raymond", we are now completely hooked on Patricia Heaton's new show called "The Middle".  "How can I possibly love anything as much as much as "Raymond"?" I protested, but she promised me I would love it, and love it we do.  At first I thought it hooked us because in the show the youngest child is "quirky".....like how some kids with Asperger's are "quirky" and the parallels between that character and our daughter are too numerous and hysterically funny to name.  But about mid-way through watching the first season shows via Netflix, we realized that we also love the show because Hayden acts EXACTLY like the oldest kid in the show, Axl.  In the show, Axl is about 14 or 15 and he's constantly slouching around the house (in boxers only) and complaining how everything is "lame".  "This dinner is lame", he'll whine, or "homework is lame", "having to clean my room is lame", etc.... 

  Now you may be wondering what does THAT have to do with National Down Syndrome Awareness Month?  Nothing actually, I suppose.  I just really like "The Middle".  I laugh my head off just about every episode and I think it captures the average American family pretty well and can see us as the parents and our kids in many of the scenese.  For instance, we've realized that Hayden acts JUST LIKE Axl.  Only without the words, because Hayden doesn't really talk in full blown conversations........yet.  But if he could, the thought bubble over his head would often read, "This___________is lame".....like when he sits down to the dinner table to eat......well, anything other than a peanut butter and jellly sandwiches (Hayden is a lousy eater and we don't exactly celebrate that aspect of his Down syndrome, but he IS an individual and he has a VERY strong personality, so we do celebrate that).  You can also see the bubble when I try to get him to help me make his bed in the mornings.  He usually grunts and yells as I'm forcing his hands to push the covers under his mattress as if to say, "making my bed is lame, Mom.  I'm just gonna sleep in it tonight anyway!"  Or when we then go to the bathroom to brush his hair the bubble reads, "Brushing my hair is SO lame! I'm not going anywhere today, why do I have to look good?  This is so lame!"  Or when he parades through the house with the remote control thrusting it into my hand and signing "Signting Time", as if to say, "I need tv now Mom", and when I say "No, you've had enough Signing Time for the day", he'll say "Noooo!', and stomp off with the bubble over his head, "It's so lame that I can't watch Signing Time all day everyday".  Then there was the time a couple of weeks ago, I think it was our daughter's second Saturday morning soccer game, where Hayden kicked the ball around a little before the game started, but quickly sat down and proceeded to put his head in his lap for the rest of the game as if to say, "Getting up before Noon on a Saturday to come watch your sister's soccer game is SO LAME".

  Be patient with us Hayden, maybe some day your coolness will cancel out some of our lameness.

Hayden Teaches Us To Read

  It must have been when Hayden was between one and two years old when we became acutely aware that Hayden was very decidedly choosing whom he liked and didn't like.  He had probably been giving us signals all along, but we have cognitive delays and can be a bit slow in our learning so it took us awhile to catch on.  One day we were assigned a new OT (occupational therapist) through our local early intervention agency and she came into our home with a Game Plan.  She knew just what she was going to do with and for Hayden who had DOWN SYNDROME.    SHRIEK!!!!!  What was that I heard?  Can you smell burning brake pads?? If I hadn't seen it with my own two eyes the second it happened I wouldn't have believed it:  Mr. Flirty-I-Love-Everyone-Who-Comes-To-My-House-To-Play-With-Me was mad as a hornet with this new OT and he was done with her before she completely unpacked her bag of tricks.

  My husband was home at the time working out of his office, just feet from the playroom and he heard the shrieking sound of the brakes too;  the grunts, the frustrated tone of voice, the cajoling begging tone of the OT.  Nope, Mr. H wasn't going to have any of it.  He was used to OT's who would engage him with smiles and playing, and singing  AS they put him through his course of exercises (life IS a cabaret after all).  This new lady was JUST here to work on what SHE wanted to do with no regard for how to motivate and connect with The Prince.  She lasted three visits....maybe.

  Fast forward a few weeks to a weekly sensory-based playgroup that was facilitated by a wonderful OT, but on this particular day she wasn't there, so we had a substitute OT for the day. After the incident in our home with the Drill Sergeant OT (now, a former OT), my radar was up, and I was now fully aware that Hayden wasn't going to perform for just anyone.  He had standards. When we walked into the large playroom (I remember this like it was yesterday) the substitute OT was sitting on the floor playing with a couple of little ones and I had Hayden's baby sister in a carrier in one arm while carrying Hayden in the other (yes, I carried BOTH babies for nearly four years......apparently I WAS standing in the line where God was handing out arms and shoulders the size of  linebackers).  I put him down on the floor so he could scoot/crawl/roll while I met the new OT (she was all smiles and I knew I could feel the love, but what would Hayden think?).  I told her that she was welcome to try to play with Hayden, but that he didn't respond too well to "agendas" and it might take him awhile to warm up to her.  She smiled and said, "Well ya know what?  I don't like agendas at all, I just love kids!"  By the time the sentence was out of her mouth, Hayden had crawled up into her arms and she was giving him a bear hug while he giggled and giggled.  Does this playgroup have any kleenex?? 

That scene still chokes me up, on so many levels.  First of all Hayden was telling me that his spirit could EASILY discern who the "good guys" were and if I would just "tune into HIS radio station" I could learn something (see, that career in radio was about to pay dividends in the relationship arena.....because we know it never paid in the financial arena!!).  The other thing I learned was that only the "professionals" who possessed TRUE humility were going to be able to "teach" him anything.  And of course the truly humble folks know that the kids are the ones who are teaching us first and foremost.  We're just here to guide, and direct, and help focus their energy.

  Kathy the OT was the first in a long line of people whom Hayden would "choose".  Since then we've learned to watch him very carefully in ALL settings: with family, friends, church, wedding receptions, meeting new people, therapies, etc....If Hayden is comfortable, then we're likely to be more open to the person/situation.  Sometimes (okay, more often than I want to admit) we'll be in a store and Hayden will reach out and touch someone.  He doesn't do it as much now, but it used to be that he would start singing with them. Maybe now that he's 13, he figures he's too cool to just break out in song with total strangers, but it used to be that a trip to Target or the grocery store meant that some unsuspecting soul was going to be serenaded whether they wanted to be or not.  You can tell a lot about what's going on with someones psyche/emotional state when a boy in a shopping cart reaches for their hand and starts to sing them "The Itsy Bitsy Spider".  More times than not, people have been very receptive, and the people he chooses are eight of ten times the elderly.  Maybe he knows they haven't sung Twinkle Twinkle Little Star in a long time, or maybe he can sense that they need a smile and some eye contact that day.  Because that's really what it's all about for Hayden, making that heart connection.  And that's probably why people are so surprised when they discover that he has profound hearing loss.  He was born deaf, has some hearing now (even better when he's wearing his hearing aids), and is here to connect with people on a heart level.

  I can hear you just fine H and your station is on all my pre-sets.

What Will The Neighbors Think?

  When you bring a baby home from the hospital, it's totally natural for everyone in your life to want to know everything about that baby.  They want to be connected with you in your newly unfolding story and they are ready to celebrate your new joy with you  In our case, our friends and family, most importantly both sets of our parents, had been with us on a VERY wild and VERY tragic ride through the foster-to-adopt process.  The week before Hayden was born our second foster-adopt baby (the younger brother in the sibling set) had been sent back to the family that had tried to kill him through starvation (he had been placed with us after being admitted to the hospital at 4 1/2 months old and weighing only 9lbs).  He turned one year old the day Hayden was born.  To say we had conflicting emotions and were a bit jumbled doesn't even BEGIN to describe our pysches at the time.  But God knew.  God knew what we needed and He began speaking into the hearts of friends and strangers even before we brought him and his oxygen tubing home from the hospital.

  As I began telling close friends about the possibility of bringing home another baby, another foster-to-adopt baby, I did so with no small amount of trepedation.  No one in our circle of friends was an adoptive family.  There wasn't adoption on either side of our families that we knew of. We were breaking new ground and just because we knew this was the path that was going to lead us to build our family (I got "the call" to adopt when I was 16 and knew it like I knew my own name that I wanted only to adopt my children. It was my first choice and my only choice; the "calling"on my life), it didn't mean we could count on our close friends and families to share that conviction, especially after having recently watched two innocent children get completely run over by the so-called "child welfare system".  Would they understand after losing a baby just days before, how we could bring home another one, and not just a "regular" baby, this one already had a label that meant "broken", "disabled", "special needs"?.  So many questions came home from the hospital with us.

  Enter another "thought bubble", this one appeared again as Jeff and I were walking across the hospital parking lot to visit  Hayden during his seven day stay at Club Newborn Nursery.  The bubble read, "There are no guarantees", and I turned to Jeff and said, "Ya know, there are NO guarantees with ANY baby.  Babies who are born perfectly healthy sometimes develop horrible diseases, some kids die in accidents, some grow into adulthood and make LOUSY choices for their lives (hence the penal system). What's the difference with THIS child?"  He paused for a minute and said, "Ya, you're right. It's no different for this one".  And the issue was settled.  For us.

  Some time during that week as I was going back and forth from the hospital, I talked with my ballet teacher on the phone.  For years she had been a sounding board for me, a mentor, a compassionate shoulder on which I had leaned many times, especially during the previous year when we had entered the very murky waters of the foster-to-adopt process.  She had been praying over us that week, but at this point she didn't know what the baby's name was.  But she said over and over in her mind she kept seeing the name "Jacob", a baby named Jacob and he was going to come home with us.  Shivers sped up and down my spine.  The first confirmation.

  After being home from the hospital for a week or so, a friend and I went to a women's conference in Denver.  We had purchased the tickets long before my life had erupted and long before we could even fathom bringing home a newborn baby WITH SPECIAL NEEDS.  My friend had a new baby too, having given birth in early July, so there we were; my friend and her new baby (this was my friend's 5th baby so nothing phased her at this point), Hayden, his portable oxygen tanks and enough tubing to go to the moon and back three times, and me, who wanted to be a mom more than anything in the world.  In our short time together as a new little family we had already experienced many miracles: I hadn't strangled myself, the dogs or Hayden with the oxygen tubing that was in every room and on every level of our house,  and I even managed to have the oxygen TURNED ON, (all the time I think-I gave myself gold stars everyday for this no-small-feat).  Hayden was breathing and eating, so why not take the show on the road?  And so we went.  It was the first time I had ever been to such a huge conference, and I was more than a little intimidated, more than a little worried that I was going to trip over the oxygen tubing, drop Hayden in his carrier, or that people were going to stare at my baby WITH SPECIAL NEEDS.  So quite honestly I don't remember alot about the conference, except to say it was fantastic; the teaching was amazing, the encouragement was genuine, and the spirit in the place was authentic. 

  At some point during the first day we broke for lunch and my friend left me to go look at the book tables.  I wasn't up for lugging Hayden and all his accessories up and down the stairs with 20,000 of my closest friends, so I hung out in the seating area and stretched my legs.  Before I knew what was happening, a woman was standing next to me admiring Hayden and telling me how precious and beautiful he was.  I agreed (I was emotionally exhausted but not blind).  Then she asked if she could pray for Hayden, and I said, "sure".  I mean, who wouldn't want someone to pray over their new baby?  This woman couldn't possibly know all the back-story of my wacky life and she couldn't possibly know the circumstances of how this baby came to rest in the baby carrier in my arms.  So she prayed.  Some of the details I've forgotten, but I remember her saying that he was a VERY SPECIAL baby and that he was going to have a life of power,  a life of healing (like he was going to be the healer) and that he was already touched by God.  She closed the prayer with the usual "amen", I looked up to her face.....but she was gone.  Like, nowhere to be found gone.  Like, as were standing there praying together, there were 15 or 20 women milling around in our section and when I looked up it was just Hayden and me within ten rows.  Suddenly I needed to use the little girl's room.

  I came back from the conference not remembering one detail of what had been taught, but with a new found confidence in my gut and heart.