As of today Blake is almost 3 years old and has been
diagnosed with the following… Tracheostomy dependent, Ventilator dependent,
Atelectasis, Chronic respiratory failure, Dysphagia, Oropharyngeal phase, GERD
(gastroesophageal reflux disease), Hypotonia, Sialorrhea, Bilateral Vocal cord
Paralysis, Type 1-A minor laryngeal cleft, Aerophagia, and a Minor Gastric
Ulcer. That’s 13 different issues with no answers.
Here is where the frustration comes in. Nearly 2 years into
this, six Life Flights later, with an un-countable amount of visits to the Pediatric
Intensive Care Unit, Pediatrician visits, and other hospital visits, there
seems to be no explanation to tie all of this together. What is wrong with my
child? Can it be cured? How long will this affect them? Are there long-term side
effects? What is the treatment plan? When do you usually see improvement? There
has been no forward movement or progress in a diagnosis or time frame.
It feels good being able to talk about what most people
bottle up. After introducing this article to people I have received many
different responses. Some say I am yelling at people, some say I am whining,
some are grateful to have read an informative article. Please do not take
offence to anything announced in this article. Instead just enjoy the thoughts
of a parent. Thoughts often not put onto paper.
7 Things You Don't Know About The Smith
Family…
1. We are tired. Parenting is already an exhausting endeavor. But
parenting a special needs child takes things to another level of fatigue. Sleep
depravation due to obnoxious ventilator alarms, water in the vent lines,
listing to our son’s breathing or sleeping restlessly over the baby monitor. I
am so tired I do not want to hear it’s like having a new born when in fact
newborns do eventually let you sleep at night. Even if we had gotten a good
night’s sleep, or have had some time off, there is a level of emotional and
physical tiredness that is always there, that simply comes from the weight of
tending to those needs. Hospital and doctors’ visits are not just a few times a
year; they may be a few times a month. Paperwork and bills stack up. This is
not to mention the emotional toll of raising a special needs child, since the
peaks and valleys seem so much more extreme for us (listen to Hannah Montana’s
song “The Climb”). I am always appreciative of any amount of grace or help from
friends to make our life easier, no matter how small, from arranging plans
around our schedule and location. With what little spare time we have we try to
allocate this time to his super star older sister. She has learned at a very
young age how to be patient and understanding. God has blessed Aleah with some
special attributes.
2. We feel alone. It’s
lonely parenting a special needs child. I can feel like an outsider around
parents of typical kids. Others do not know what it like to leave church
meeting, sporting events, or public events to suction you child or to have to
take him home because he is not maintaining his oxygen or his work of breathing
has increased. It’s been a sanity saver to connect with other special needs parents,
with whom it’s not so uncomfortable or shocking to swap stories about, trach
decanulation (pulling the trach out), suction, medications, feeding tubes,
communication devices, and therapies. Even within this community, though, there
is such variation in how every child is affected. Only we understand Blake’s
unique makeup and challenges. With this honor of caring for him comes the
solitude of the role. We often feel really lonely in raising him.
3. We are jealous. It’s a hard one for me to come out and say, but
it’s true. When I see a 2-year-boy do what my son can’t (like walk with out
issue or run and play), I feel a pang of jealousy. It hurts when I see my son
struggling so hard to learn to do something that comes naturally to a typical
kid. It can be hard to hear about the accomplishments of my friend’s kids.
Sometimes, I just mourn inside for Blake, “It’s not fair.” A life with out
sound, Blake will cry with tears but all we here is heavy breathing, hearing
words of any kind is a special treat, his laugh has not been heard for 2 years.
Weirdly enough, I can even feel jealous of other special needs kids who seem to
have an answer as to what the issues, dieses, or syndromes, certain disorders
like downs, or autism, which are more mainstream and understood by the public
and have a belonging. They seem to offer more support and resources than
Blake’s rare condition. All we have is the Blake Smith Foundation which is what
ever help we can find. It sounds petty, and it doesn’t diminish all my joy and
pride in my son’s accomplishments.
4. We are scared. I worry that I’m not doing enough. What if I
missed a treatment or a diagnosis and that window of optimal time to treat it
has passed, now another Life Flight. I worry about Blake’s future, whether he
will ever be ably to be baptized, hunt, and have fun with the other children on
the playground, play sports, or get married, or live independently. I am scared
thinking of the hurts he will experience being “different” in what’s often a
harsh world (not to mention that I fear for the physical safety of the person
who inflicts any hurt upon my son). I am scared about finances. Finally, I fear
what will happen to Blake if anything were to happen to me. In spite of this,
my fears have subsided greatly over the years because of my faith, and because
of exposure to other kids, teenagers, and adults affected with Blake’s
disorder.
5. Some times I wish you would stop asking, “How is you son?” How is
the little one?”… We seem to give the answer he is ok or he is maintaining.
When we really want to let people know we struggle every day to cope. Blake is an
ever changing child. Do you really want the 15-20 minuet explanation? Yes, Blake
is well he is still with us. I know people usually don’t mean to be rude by not
really wanting to know how he is. But whenever we are asked we feel a pang of
hurt, because we want to share but you only want to hear Good, Fine or Ok,
during the explanation people have drifted off because it was more information
than they wanted to hear. I want to talk about my son / it’s hard to talk about
my son. My son is the most awe-inspiring thing to happen to our life. Some days
I want to shout from the top of the Empire
State Building
6. We are human. We have been challenged and pushed beyond many
limits in raising our son. We’ve grown tremendously as a family, and developed
a soft heart and empathy for others in a way I never would have without him.
But I’m just like the next parent in some ways. Sometimes I get cranky, my kids
irritates me, and sometimes I just want to flee or go away and have some me
time or court my wife. Sometimes it’s nice to escape and talk about all these
other things. Thank you to our family and friends whom have helped us to unplug.
7. The Family. Becky
is the greatest reason this family can operate. How do you describe the perfect
Mother? Dependable, intelligent, generous with time, believes in doing the
right thing the list can seem to go on for ever. After everything noted above
she still finds the time and energy to do things beyond the best that can be
expected. Aleah (Blake’s older sister) is the biggest five year old I know. She
is able to be put on the back burner while we deal with Blake’s different
issues, emergencies, and appointments. Who can ask for a bigger sister than Aleah?
Blake has somehow blessed our home with all these challenges and sleep
deprivation. Strangely I can not imagine I would want my family any different (perhaps
less with the medical visits) than the way we are now.
