Life around here is never dull. In fact, it’s what I would
call “complicatedly simple”. You may be asking yourself, “Doesn’t she mean
simply complicated?” Nope, it may not sound as pretty or grammatically correct,
but it is definitely the more accurate of the two phrases. I want to stop here and say this is not a
complaint - just a statement of fact. I
am very blessed and thankful for my life, even with all of its complicatedly
simple aspects.
I have worked at a school for the last 7 or so years as a
teacher and then most recently an administrator. I also recently (about a year
ago) received my master’s degree in special education. I have always loved
working with kids, unlocking what lies within, and loved having the opportunity
to learn more and apply it in the educational setting. Ironically, as all of
that came to a close, it became abundantly clear that the needs at home were
growing larger, and it was increasingly more difficult for me to balance
everything. At the beginning of the last
school year, my daughter was in the middle of an 8-week migraine, and had to be
hospitalized twice within the first month of school, once for a week and again
for about 5 days. When not in the
hospital, every day was a struggle, and I could not even fathom how I would get
through the school year. Once we “beat the migraine”, things were better, but
never easy, and I found myself stretched so very thin, unable to give
everything I wanted at home or work because it was just impossible. I think
that is hard for anyone, but especially someone like me, who always likes to
give my full heart and best effort to whatever and whoever comes my way. Mike and I, along with those who I work for
and alongside at the school, worked hard to try and make adjustments to my
schedule or workload, Mike changed his schedule. We tried everything. It
honestly was exhausting and such a complicated mess. We were at a loss of what
to do to get out of “survival mode”.
In actuality the solution was simple, just hard for me to
swallow. Mike and I made the decision for me to step down and stay home next
year. Who knows? It may be longer. For
now, it honestly is necessary. Natalie is headed to middle school and we aren’t
sure what those new demands will bring for her or us. It was challenging to accept
that I would need to stay home, but so very clearly the right decision.
Living with a child with mitochondrial issues is quite a
ride. Mitochondrial Disease is fascinating. In its most extreme forms, you do
have “mito” kids (and adults) who look like what one might expect, with tubes,
machines, and more. Many of those affected; however, look just like Natalie.
In many ways every
day is different. You don’t know what each day will bring. Will it be a good
day or a hard day? What symptoms, if any will flare? Will the flare or episode/issue be more minor
or will we be in the hospital for a week? You just never know. In other ways,
every day is the same. You, as parents, have to be on top of everything. You do
all you can to make sure your child is able to experience as much normalcy in
life as possible. It’s the little things
that matter - going to (and thriving in) school, participating in activities,
having fun outings/sleepovers with friends.
In the last few months, I have had various people make
comments to me such as “Natalie looks great”, “Natalie looks so normal”, and/or
“You would never know Natalie has medical issues. She doesn’t seem much
different from my kid”, “I don’t understand why you need to stay home. She
seems like she is doing well”. It is
hard to know how to respond to them. In
many ways, I think it is quite awesome and see it as a huge compliment. I say that for a few reasons. First, because
our goal as parents is to make sure she doesn’t see her illness as a
restriction or allow it to define who she is.
We want her to retain her joy and adventurous spirit. It also speaks to the efforts of both her
doctors, and us as her parents, who work so hard behind the scenes to support
her needs and ensure she can do as much as possible without compromising her
body. The good days are the result of a lot of work (and are
often accompanied by unspoken pain or issues going on inside her body). I’m telling you that kid can do more with a
migraine than anyone I know. And…we
don’t dwell on or post much about the hard stuff. If you know us at all, we like to smile and
have fun. We work through the challenges
together, and live life to the fullest we can. I think we do a pretty good job.
As a family, our schedule revolves around Natalie’s needs.
Not because we cater to her, but because it is a necessity. She has to go to bed at 7:30 during the
school year. She must take all 10-12 pills and 2 liquid meds each morning and
her 3 pills at night. Each of them is necessary. She has to eat balanced meals
on a regular schedule including
snacks. She cannot be out in the heat for long periods of time. Her level of energy varies day to day so we
have ideas, not plans, and often must make adjustments because of how she is
doing. There is also a lot of coordination required for her schoolwork due to
her fatigue and absences. Last year, she missed 60 days of school, which meant
one of us had to be home with her each of these days AND resulted in a lot of
home teaching and work. I could go on
and on. We manage her diet, sleep, rest,
activities, illnesses, and stress level – all things that require energy from
the body. It’s simple to say – actually doing it is a whole other story.
I’ve got to be honest. I don’t really understand it all
myself. I look at Natalie some days and
am baffled that she has Mitochondrial Disease. I come to understand a little
more with each test result and talk with the doctors, but it is all very weird.
True to this complicatedly simple life
we live, Natalie had a muscle biopsy in January and two of the three test
suites for it have been completed. The goal of this testing is to determine the specific
type of Mitochondrial Disease she has so that her treatment can be more
effective and prognosis more specific.
The results clearly show a mitochondrial problem and are not normal.
That said, according to her doctor, they are rather complicated making it hard
for them to map to a type with certainty.
Third test is a charm? We will see. For now, I am so thankful her
situation is not more extreme and pray that continues to be the case as she
grows.
Natalie is also going to have surgery this Wednesday. She
has sleep apnea, and the doctors have not been able to pinpoint the root cause.
As her ENT said, “Natalie’s presentation is not the norm”. Because of this, they are going to do a sleep
endoscopy where they induce sleep with anesthesia and insert a camera to watch
her airway as she sleeps in an effort to determine what is causing the
breathing obstruction while she sleeps. If they determine the cause, they will
handle it surgically right then and there. The current theory is that the cause is her
lingual tonsils – the second of three sets of tonsils we all have – did I just
blow your mind with the three sets of tonsils thing? Oh the things we learn by
being parents to this kid. Anyway, removal of these results in a hard recovery,
with 7-10 days of significant pain and difficulty swallowing. That doesn’t bode
well for a kid who needs to be super well hydrated and have a balanced food
intake. But, we shall see. On one hand,
Mike and I do not want her to have to have an actual surgical procedure. If
that is the case; however, that means they could not correct the root cause and she
will need to be on a CPAP machine when sleeping for the rest of her life and
things will just worsen. On the other hand, most of the likely surgical options
will be more than unpleasant and come with their own set of challenges,
but hopefully, with a better long term outcome. Sleep apnea and Nat – complicatedly
simple.
In our family, we always say that “normal” is boring. Natalie is far from normal, she is
extraordinary, and so is this complicatedly simple life we live.
