On January 8, 2013, Kyle passed away at home with his
family. He was 8 years old, had the nickname “Big”, and he taught tens of
thousands of people to Live Life for Today during his all too short time on
earth. I met his mother through the March of Dimes, and I have seen her in person and hugged
her several times….
I am trying to process the loss of Kyle, and imagine what
Kate and the whole family is going through right now.
Nothing I write would do justice to Kyle or his family, I
just need to get out all of the emotions I am dealing with, this is more of a
post to explore all of that. It is, as usual, all over the place.
We know instinctually that parents are not supposed to
outlive their children, it doesn’t make any sense. We are meant to care for our
children and see them grow up. Preemie moms and mito moms know this is not
always the case, and I know many babies and children that have gone to heaven
long before their parents. Babies that fought alongside Tucker for months
passed away right before Tucker came home, and another one a few months after.
We mentioned their names often, asking them to be with Tucker and watch over
him. Samuel’s name is mentioned often in our home.
The Sandy Hook elementary tragedy was so awful, I heard
reports of it through facebook then I watched online news, it was so hard to
believe. As the reports kept coming, and we learned the victims were mainly 6-7
year olds, I was glued to the TV, learning all about the kids. I was so angry
at the one news channel that kept showing the killer’s picture and talking
about him instead of the victims. The other channel showed pictures of each
child-one little boy on a 4 wheeler, one little girl who asked for cowboy boots
for Christmas (like my 5 year old cousin), one little girl playing the piano
with her little brother….then I learned that two of the children had special
needs and/or were nonverbal. I know that their families’ lives likely revolved
around therapy schedules, dr appointments, arranging schedules to avoid
meltdowns, and putting so much energy into helping them reach their potential.
That is all over for them now.
While so many people reacted by demanding stricter gun
control, asking for better mental healthcare (as they should), I just felt very
overwhelmed and tired. Not the physical exhaustion I felt when Easton was just
home from the hospital, up every 3 hours to eat, and then I had to pump, and
then be up all day with Tucker…more of the emotional exhaustion from trying to
comprehend how something like this could happen to families like mine. As the
country has kind of moved on just a month later, I still wonder about the
families. One of the articles I read explained that this tragedy particularly
hit parents of 6 year olds, as most of the victims were around that age. It
explained that we know what 6 looks like, sounds like, how its hair smells so
clean after a bath, how 6 delights in learning new things….6 is our whole
world, and we can’t fathom it being ripped away. Although Tucker is not a
typical 6 year old, about 90% of the article applied to him, and also my 5 year
old cousin.
Tucker’s anxiety increased tremendously during the Christmas
break, he really needs his routine. He is having trouble sleeping, crying real
tears a lot, throwing fits, chewing his shirts up, and grinding his teeth. We
can never tell if he is sick or if this is all behavioral and anxiety related.
He can’t tell us….and that is hard. I called his neurologist and she is
decreasing his dose of SSRI meds and adding risperadol for the OCD and anxiety
to hopefully help his compulsion to chew and grind his teeth. We got him chewy
tubes to gnaw on which he uses often, but sometimes they are just not enough.
This has added to my feeling of being just plain tired and wishing things were
different.
January 8 started out as a good morning. I woke up on time
(this never happens!), DH helped even more than usual with both kids, Tucker
was well behaved and excited about school, and Easton was smiley and so very
good, as usual. I had a decent ride into work with my sister, and I settled in
to check emails then had a quick peek at facebook. This is where I learned that
Kyle had passed away, in his home, with his parents and his "kids"….the wind was
knocked right out of me. I couldn’t cry, I didn’t really believe it. I looked at
Team Kyle’s page, at everyone’s statuses, and they all were telling me it was
true. There are so many reasons why my heart is broken, I met Kate on several
occasions, our babies’ stories started out so similarly, she provided me so
much support and advice over the years about tube feeding, life with so many
people observing you, the feeling of not being able to help your child… I never
met Kyle, but as many others know, we didn’t need to meet him to love him. Kate
probably didn’t get a full nights sleep in over 8 years, yet I know she’d
gladly live that life forever if it meant that she was up caring for Kyle.
I heard this song in the car that day as I was at my lunch
break http://www.youtube.com/watch?v=UUEy8nZvpdM , and I couldn’t stop crying,
sobbing really. Kyle, you touched so many lives and taught us all so much, now
you have gone to rest. The work for your family of learning how to be on earth
without you is just beginning, I will hold the St Clair family in my hearts
forever.
