Take Me Out To The Ball Game!

Friday, October 28, 2011

Thank You Hayden

To My Dear Sweet Hayden,

You are now a mighty young man of 13, and before life gets even crazier than it already has, I just wanted to write you a note to say thank you.  Thank you for being you.  Thank you for being my son.  I'm horribly insecure, having spent most of my life's energy (until you came along) trying to please everyone else and always, always, always coming up short.  Thank you for teaching me that you don't have to please anyone and you have absolutely NOTHING to apologize for.  I LOVE your self confidence and feed off it.

Thank you for your joyous spirit!  Thank you for leading with a smile when you walk into a room....any room.  Thank you that when we encounter people we don't know out "there" in the world, you change people with your engaging smile.  I absolutely LOVE following you in a crowd to watch the hearts that melt in your wake.  It's magical.

Thank you for trying.  In all the therapies, (all the puzzles, all the bounces on the giant balls, all the sit ups, all the climbing, all the bike riding), in all the outtings with your crazy parents ("what?  I'm hiking ALL the way down to Abalone Cove???!"), all the meetings you've had to sit through, you try.  You try to talk to us even though you can't hear much and the muscles in your mouth don't work all that well yet, and yet you try SO hard to be connected to me, to us, your family.  Thank you.  I feel unworthy of your efforts.

Thank you for reaching out to hug me when I'm completely overwhelmed and I've just lost my mind with all the demands of being the mom to two busy kids.  Thank you for not holding a grudge against me for all of my juvenile behavior.

Thank you for changing my definition of what a family is and thank you for teaching me to see you how God sees each and every one of us, as treasured works of art, each with a unique mission here on earth.

I will forever be in your corner,

Your Mom

Your Unborn Baby Can't Wait To Meet You

It's almost the end of October, which means it's almost the end of Down Syndrome Awareness Month (or if you're like my 11 year old daughter who's been waiting for three months, it's almost Halloween--a day I think is more about the "hype" for her than the actual day....but that's another post).  Before my feeble brain cells take me completely off track I want to dedicate this post to the mom or dad out there who just found out that their unborn baby "may" have Down syndrome or Tisomy 21.  Here are some facts:

*Prenatal tests are NOT always accurate.  I've had friends who have gone through amnio's and they've come back negative, and then they gave birth to a baby with Down syndrome.  I've had friends who have had blood tests showing elevated levels of proteins and the baby they give birth did NOT have Trisomy 21.  There are NO guarantees in this life.  There just aren't.  Please get over this "I have a right to know all the variables so I can make a decision" (the emphasis being on the "I" as in "I" know what's right and wrong in this world).  This post modern philosphy serves no purposes whatsover in the world of parenting a child with Down syndrome and the sooner you put that behind you, the better off you'll be. 

*Doctors have MEDICAL degrees, they are NOT experts on how individual children develop and grow and they have NO business telling parents what their baby's future is going to be like.  Doctors NOT immerse themselves in the special needs community where positive attitude and aptitude count for EVERYthing and most certainly are directly related to quality of life.  Even in this day and age, in the year 2011, doctors in MAJOR hospitals (even here in Los Angeles) are telling parents of newly born babies with Down syndrome that there isn't much hope for their babies to learn their names, recognize their parents' faces, or have much of a life at all.  DO NOT BELIEVE THESE LIARS.  These are lies straight from the pits of hell, plain and simple.

(do I have your attention now?)

*This life with a child with Down syndrome is the BEST.  That's a fact and I'll argue for it till the cows come home. Your heart will grow exponentially.  Your baby (who will be a child before you know it) will DAILY teach you what it means to be strong and what it means to perservere.  Does that mean that every child with DS has a "hard life" filled with physical and cognitive challenges?  Not necessarily, but nearly every child with Down syndrome experiences challenges in at least one part of their lives; be it health, low muscle tone and coordination (not all kids with DS are "floppy" like Hayden was, but that extra chromosome does create an underlying "low muscle tone" issue, which pretty much every kiddo with DS that I know overcomes with time and patience), speech, or cognitive development.  Despite all that, you will have the BEST and most pure love from your child with Down syndrome that you can even imagine.  I'm pretty sure I can't describe this very well, but the love from your child will just knock you out.  You don't deserve it, I don't deserve it, and yet that love they have for you  is SO pure, SO unconditional.  It's an honor to have them in your life.

*Last fact:  this baby you're carrying who may have been identified as possibly having Down syndrome has a BRIGHT future!!  They are fierce and strong!!  When that sweet smile emerges at a few weeks old when you walk into a room it will strengthen you, embolden you, and it will hold you up when you need it no matter where your life takes you.  Please give them a chance to bring the happiness and joy into your heart that I'm gifted to live with every single day.

An Overdue Dose Of Humility

Do you ever read something or hear something and wonder, "Did I hear that right?  Did he/she meant to say that?".  Well, this morning I received what felt like a sharp rebuke from a friend, not necessarily a close friend, but someone with whom I'm certainly friendly and with whom I have regular contact.  It was in the context of me asking on a social media forum about when a particular meeting was coming up, and I joked about myself in the question, saying something like "well if I were more organized, I'd probably know about this meeting which is about organization!".  And he responded by saying how nice it would be if the group to which I was referring had a website, a calendar, etc... in which to communicate upcoming events.  Now it's very possible that this person wasn't trying to be snarky in any way and that his tone was intended to be completely benign.  But it felt like a slap and so I thought, "hmmmm I may need to consider this a bit".  And so I did a few minutes later, while Shalom (our Newfoundland) and I were schlepping ourselves around the park a few times (okay, okay, I'll be honest: I was schlepping pitifully, Shalom effortlessly trotted for the first couple of laps around the park and then she too began schlepping and trying to peel off toward the Suburban she off down the hillside as we rounded the corner).

Back in the day when Hayden was a baby and our hair was on fire about forming a Down syndrome support group for parents in our community (there were no active Down syndrome groups or disability groups of any kind), I was unbelievably arrogant, now that I look back on it.  The group we formed really was all about "us", but I did my level best to dress it up in a way that it looked like I was serving others though.  Don't get me wrong, we DID want to connect with other families, we DID (and DO) want to make sure that parents knew everything they possibly could about feeding methods, different types of therapies, how to create Infant Family Support Plans and IEP's that really would serve the individual child, and we really DID want to have friends that would share our journey through disability with us, etc...., but underneath it all I'm pretty sure my attitude was, "I've gone to all this work to make these meetings happen; I send out e-mails, I make fliers (this was WAY BACK in the day before a common schlub like me would even consider creating a webpage on my own.  Come to think of it, I don't think this schlub would do it even today!), "I make phone calls letting people know what's going on out there in the community, the least "you" can do (the "you" being that parent of another child in the community with Down syndrome) is pay attention!  I'm working here!!"  Ya, I was all about having a servant's heart.

So the medicine I got this morning may or may not have been intended to sting, but since it did sting, I take it as a welcome sign that I sorely needed a dose of humility.  A little trip down memory-lane if you will; to remember back in the day when it was just Hayden and us, and then a newborn baby girl (and yes she had significant special needs and we were VERY busy on every level trying to provide her with supports and services all the while trying our best to adopt her-but it seemed a LOT simpler then) and how our lives revolved around "us" and our efforts "for" the community without really stopping very often to take into consideration what those other families were going through at the time and what could have been preventing them from jumping in feet-first. Without sounding like a martyred soul, raising a child (even a young one) with special needs is well, special.  There ARE more appointments, there IS more paperwork that ONLY you can take care of.  There are more stresses on our every day lives than that of a typical family.  And that's just if the child we're talking about is "healthy", not requring many medical interventions and not taking into account the other children you may have and just all it takes to be a parent.  Ya, it's crazy!!

Since leaving that town where our kids were born a few years ago, our lives have taken a couple of significant turns; geographically, spiritually, emotionally, etc....  And while Hayden has been relatively "healthy" overall, for the first seven years of his life he had life-threatening ear infections, eight major reconstructive ear surgeries (including peeling back the ear itself and ridding the middle ear of potentially deadly bacteria) and a life changing bout with Infantile Spasms, which forever changed Hayden and our family.  About the time Hayden was getting healthy (and we began homeschooling,-NO coincidence there with the state how his health steadily improved), we began to realize that our daughter was exhibiting some traits beyond what knew her challenges in the sensory integration arena to be, and that has led us to the world of autism.  So for the past six years (and counting) our days are taken up mainly with getting through with as few blow ups as possible.  To say it's been rough doesn't even begin to describe what most of our days are like.  I'm glad I didn't know then what I know now, but I sure wish that I had had more compassion for my fellow parents on the journey and what they could have been experiencing as we were on the road together. 

Of course hindsight being 20-20 and all that,  I sure hope that despite my ego, I helped even one person and never made someone feel small.  And if I did, I hope I have the opportunity to apologize one day.

Tuesday, October 11, 2011

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.

Thursday, October 6, 2011

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.

Wednesday, October 5, 2011

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.

Tuesday, October 4, 2011

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.

Monday, October 3, 2011

Perfect From The Start

  One of the first major principles that I learned in the first few weeks of being Hayden's mom was what it means to be perfect.  I mean, here we were bringing home from the hospital what the world would call a "disabled" child, a "defective" baby.  (I would later learn that 90% of all babies identified, either correctly or incorrectly, in utero as having Trisomy 21 are aborted).  He had this thing called DOWN syndrome for crying out loud!  He was different than all the other babies in the newborn nursery.  The doctors had to determine "what was wrong with him" from the minute he was born and when his characteristics matched enough, he was given the label of Down syndrome (a few days later a blood test called a keratype would confirm that).  All of these terms and defnitions floated around in my head as I had him home with me spending HOURS gazing into his amazing little face.  I searched for what was "wrong" with him but couldn't find much.  Sure, we were concerned about him being on oxygen, even though the valve on the tank only needed to be barely open for him to saturate at 99% or above, and we wanted to know how long that was going to last, but other than that, I just couldn't see what was "wrong" with our new baby.

  So what does the word perfect mean anyway?  Everybody always talks about bringing home a "perfectly healthy baby boy or girl", but what does that REALLY mean?  I had grown up with the phrase "God doesn't make junk" and there's that verse in Psalm 139 where David is talking about how God had known his innermost parts since he was in his mother's womb, so the idea that God was the Creator and Divine Inspiration for each and everyone of us wasn't foreign to me.  But clearly not everyone was on board with the philosophy that God was THE designer of each of us because people everywhere, and certainly in religious circles, were VERY upset, sad, and even grief stricken when any baby was born with something "wrong" with it,  something like DOWN SYNDROME.  And I wanted a quick answer to have for those people who were in anyway going to feel sorry for us as parents, or for Hayden.

  I learned that "perfect" essentially means "complete".  It's a Greek word that Aristotle used to describe something that had attained its purpose, it was complete in and of itself, and something so good that nothing of the kind could be better.  I immediately felt FREE.  I knew Hayden was perfect!  Yep, he had an extra chromosome (and I had made it my mission to read everything ever written on the subject, even going to the......get this:  THE LIBRARY.  A building that house millions upon million pieces of paper with information typed on them.  Hayden's SO old that I had to search by hand periodicals (magazines) for articles on Down syndrome.  Ya, I was that thirsty for knowledge!), and for sure his little body was floppy, but he was COMPLETE.  He was exactly how God designed him to be.  Whew

  Knowing Hayden was perfect just the way he was born completely changed the lense through which I saw (and see) the entire world.  Yep, Hayden was born with extra genetic material (along with thousands of other people).  Yep, some things in life might be harder for him to master because of that extra chromosome, maybe some things he would never be able to do, only time would tell.  But for now, my perfect baby was perfectly happy and content in my arms.  Thank you Hayden for teaching me about perfection and so much more!!

Sunday, October 2, 2011

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.

Saturday, October 1, 2011

Celebrating The Extra In October

  Today marks the beginning of Down Syndrome Awareness Month, so it only seems fitting that in honor of Hayden, I should try to recount the very first moment that I became "aware" of Down syndrome in my life.  Be patient, it's a wild ride, but I remember it vividly.

  As I was driving one summer day in 1998, I turned a corner and a  little thought bubble crossed the top of my brain that read, "what about Down syndrome?" and the implication of that little thought was "what about a baby with Down syndrome?"  I shrugged and said to myself, "Hmmm, Down syndrome, that doesn't sound like a big deal", and a I let the thought go.  (A little excursion off the beaten path here to explain that my husband and I had been in our county's foster-to-adopt program for nearly a year and had already had a sibling set temporarily placed with us, with the youngest, a baby, still with us) Fast forward a few weeks: life had gone full-speed ahead and not at all in the direction we had wanted, but I"ll get to that part in a minute.  I was on the phone congratulating a friend whose baby's adoption had just been finalized that day, and he told me that that as they were leaving the courthouse that afternoon, their DSS case worker told them about a baby who had just been born, who needed to be placed as soon as possible and that this baby, a girl he thought, had Down syndrome.  Since that thought bubble appeared in mind, we lost our second baby, just a week before, and had arrived back in town few hours earlier from an out of town hike-and-grieve-at-timberline-camping-trip.  I didn't mention anything about this new baby to Jeff that night, as we were both emotionally and physically exhausted and VERY raw, but called our caseworker the next day to see if she knew anything about this baby girl.  She said she didn't, but she'd do some digging and get back to me.  Within minutes she called back and said the baby was a boy, still at the hospital, the mom had decided to relinquish the baby and that so far there were no prospective foster-to-adopt families.  I called Jeff on his lunch hour, gave him the sketchy details and by 3:30 were were in the hospital nursery and I was feeding a precious hours-old baby boy a bottle.  It took him longer to drink his bottle than for me to fall in love.

  We had SO many questions; Why was his mother NOT taking him home from the hospital?  Was she SURE she couldn't raise him? Could we actually take him home without fear of the mom changing her mind and us suffering another horrific loss?  Were we ready for even the slightest possibility that could happen?  Would any social worker in their right mind actually GIVE us a baby a) so soon after losing our first two children and b) would they actually place a baby who had a disability (and who was coming home on oxygen, no less) with US??  We barely managed to keep ourselves afloat in life, could we care for a baby with "special needs"? And these weren't the only questions.  We wanted to know things like, what exactly was Down syndrome and what did it mean for his future?  I mean, what do people with Down syndrome actually DO with their lives?  Do they go to school?  Do they read, write and participate in all of life's activities like boy scouts, soccer, baseball, climbing on monkey bars and annoying their sisters and brothers?  Was he going to have a "normal" life?  Fortunately for our caseworkers and the on-call pediatrician covering the nursery that week, we didn't want all those answers right away, just by the time the baby was going to be discharged from the hospital, which turned out to be seven days.

  Within those seven days of going back and forth from the hospital (I spent all day everyday in the nursery with him, holding him, talking to him, reading to him and feeding him), the next biggest question we had was "What would we name him?"  His birth mom had given him a name, Jacob, and that was fine, but we wanted to give him something special from us.  Enter the next thought-bubble: This one happened as Jeff and I were walking across the hospital parking lot getting ready to see this baby again, probably only a day after seeing him for the first time.  I said, "Hayden!" and Jeff said, "Uh, my name's Jeff, not Hayden" "NO DOOFUS!! for the baby!!!  Let's name him Hayden!", to which Jeff said, "Oh, the famous football coach from the University of Iowa-sounds good!".  "Ya, that's it honey, I want to name my baby boy after a football coach. Uh, NO....it's just a name that popped into my head, what do you think?", I asked. He thought for a few seconds and then said, "Sounds good to me", and the deal was done.  Hayden had a name.  In the meantime, word had spread among friends and family in our fare town that we were getting a new baby.  A special baby.  A baby that might need some extra care. 

  This story wouldn't be complete if I didn't share a conversation I had with a complete stranger on Wednesday evening of that week (the day after seeing Hayden for the first time), because that's when I actually became"aware" of what Down syndrome was and what it wasn't.  I remembered working with a guy at the health food store who told me that his mom helped families in our town whose babies are born with disabilities find the services and therapies they need (which was a big news flash to my naive mind: "there are little kids with disabilities? hmmm, who knew? I thought).  Turns out this guy's older brother had this "Down syndrome" thing, so I found his mom's number in the phone book (if you have to take a minute to scratch your head to remember what a phone book was, that's okay, this was "back in the day", WAY back in 1998) and she generously spent the next hour and a half "schooling me" on all things disability as it related to having a baby with Down syndrome.  She shared with me with me how kids with disabilities can have VERY rich and very "normal" lives, compared to when her son was a baby.  She explained how health care, for one thing, had come so far and that most children with Down syndrome are no longer sickly and frail.  She told me how Hayden would play with other kids his age, he would go to school with his neighborhood peers, he would be able play t-ball if he wanted, and now days he could join Cub Scouts, and that "now days" kids with disabilities were being included in all aspects of what we call "normal" life.  It was a conversation of hope and light and it was just what I need to hear to push forward.

  When it was time to come home the next Sunday, we came home with was a brand new shiny baby boy, sporting a dashing cannula, one oxygen tank, one apnea meter (when we left the hospital I was in a cold-sweat over this whole "apnea" thing. I had NO idea what "apnea" was or if it was contagious.....were the dogs going to catch it?, 'cause that would be bad, I thought), and enough oxygen tubing to go from our house to the moon three times, and a few more pressing questions.  The oxygen dude was at our house before we made the 14 minute trek home from the hospital.  Completely convinced that I was the LAST PERSON ON EARTH who should be trusted with ANY kind of medical equipment to be used on a real live human baby, I offered (okay, I begged) the oxygen dude to stay in our spare bedroom where I promised him he would be comfortable for as long as this baby would need all that stuff (and considering we lived nearly a mile high in Southern Colorado, who knew how long that would be, but I was hoping we'd be free from it by the time he turned six).  He was saner than I was, so he thought I was joking, and he casually jogged to his oxygen-dude van.  "No really, come back here!!  What do I do when that thingy beeps??  How do I know to change out the tanks?" And poof, he was gone.  Fortunately though, as the oxygen dude was burning rubber away from our house, in walked the home health care nurse that would ease us through the transition of bringing-home-a-baby-on-oxygen.  And she was great.  I felt like as long as she was making her daily visits to check his weight, his temperature, and O2 stats (that's medical mom lingo for oxygen stats-how much oxygen is his body saturating?...80%, 90%, 99%? how much O2 is he getting without the giant green tank?) the chances were slim that I was going to do something "wrong" with this BABY WHO HAD SPECIAL NEEDS (I still had NO clue what that actually meant for our everyday lives).  Before the nice nurse lady was out the door after her first visit, Hayden and I were nestled in bed (with our ever-vigilant-Westies snoring at the corners), for our first nap together.  The thought bubble over my head read, "aaah".  Most of the questions we had at the beginning of the week that seemed so urgent, remained unanswered, but for now, we were a Mom and Dad and baby boy......and enough oxygen tubing to go to the moon and back.

 Hayden on his bike at the beach, June 11

"What can I say? It's cool to be me!"

Watching his favorite sport (baseball) with Dad

Just fiddlin' around, Aug. 11