Some say there's nothing more difficult in life than unmet
expectations. My wife and I had our expectations not only unmet, but
turned upside-down and turned inside-out towards the end of May in 2007.
On that day my wife received a diagnosis of High Functioning Autism for
our 7 year-old son, Tommy. Incredibly, the results of a genetic test for
our then 2 year-old daughter, Isabelle, had come earlier that same day;
Rett Syndrome. We'd been watching her anticipated milestones fall
further and further behind for some time before that day, so we knew something
was wrong; we just didn't know what or for how long it would last.
Every
couple hopes for beautiful, perfectly healthy babies. While my wife and I
agree that our children are beautiful, we are also, unfortunately, not able to
experience perfectly healthy in any way, shape or form. Tommy is now 14
and sometimes rages out of control when confronted about relatively minor
things, like stealing food from the pantry, or not getting as much time on the
computer as he wanted. This past year he has shattered the glass pane in
our screen door, created holes in the dry wall in several spots in his room,
broken 3 or 4 pairs of glasses, lost backpacks, wallets and MP3 players,
wrestled with police, run away from home several times, refused to take his
meds as a negotiation tactic and sprayed the contents of douche bags all over
our kitchen floor and appliances. It's okay if some of this makes you
laugh. sometimes I feel like I must laugh ... or otherwise I'll cry.
Isabelle
has had several surgeries, including a G-tube (at 30 months old) due to
"failure to thrive" and this year, steel rods inserted along her
spine to correct severe scoliosis (a combined total of 106 degrees out of
vertical). She requires 24 hour care and countless doctor visits with
specialists. Every morning she must be disconnected from her feeding
tube. Each night she must be connected to her overnight feed. The
fun nights are when she manages to disconnect her feeding tube (where the
extension connects with the shorter tube). We jokingly call this
"feeding the bed". We joke because we must. Because the
alternative is to ... well, you know what the alternative is.
It amazes
me what you can "get used to" when it comes to your special needs
children. It is not a normal life. We can't remember the last time
we had a "date night" (our unique situation makes this a major
undertaking...gum-chewing 14 year olds with acne and black fingernail polish on
their fingers just don't fit the bill with kids like this). We are
constantly reminded that we have children that are not well. Children
that are not quite ... normal. They may never go on a date or marry
someone. It makes my heart ache to contemplate this - to contemplate that
the word "never" can apply to my children for whom I wanted the whole
world when they took their first breath, cried their first cry, and opened
those sweet little eyes to check-out their new world mere hours after their
arrival.
It's not
all pain. There is also a lot of joy, too. Their smiles are
sometimes hard-won, but all the more precious for the effort taken. Our son
has a brilliant and very creative mind. He memorizes origami creations.
He devours all available trivia regarding his favorite PC game
(Minecraft). Isabelle possesses a belly-laugh that can make the worst day
at work just melt-away instantly. Tommy has a great sense of humor.
He loves to sing (thanks to his Mom). He introduced me to Adventure
Time and the ridiculously random "ASDF" on youtube.com. They are constantly surprising
me. To them - life is normal. They have never known any other
existence, and they are able to be content and even thrive - not realizing they
ways in which they have been robbed of the things that we often take for
granted. I am humbled by their courage. I often wonder if I could
endure what they endure.
Other
parents of special needs children will recognize much of what I have talked
about. They know both the hardship and the wonderful love that comes from
having these angels in our homes.
They are not here to be taught, but to teach.
I am grateful for the lessons.
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