Tomorrow is the birth of a new school year for Kyle,
Natalie, and myself. Clothes and
supplies have been purchased, and my classroom is ready for my students. I should be excited and I am, but I am also
struggling with feelings of extreme trepidation. In the morning, we hand my daughter off to an
amazing teacher, who is also one of my closest friends. We have amazing support from the school. It should be simple for
me, but my daughter has not been in the care of anyone other than Mike and I
for over a month. She also has had only a handful of "normal days". Tomorrow represents a
“re-letting go”, with the full knowledge that I have zero idea of how it will
go. It is well, not my favorite.
As many people know, Natalie has been diagnosed with a
mitochondrial dysfunction. Her body’s energy requirement basically exceeds its
energy production – often. The mitochondria in her cells are deficient so her
body has to work much harder and is easily compromised. With this condition,
she developed cyclic vomiting syndrome almost two years ago and went through a
long process full of doctors, tests, and suffering prior to receiving her
diagnosis and receiving appropriate care.
After seeing a specialist and getting on a great medical
treatment plan, she had a much better year last year. Then came summer. This
past July was truly a struggle for all of us. Natalie’s episodes came back with
a vengeance. In addition to the fatigue and intense nausea and vomiting, her
episodes also started to include debilitating migraines and shallow breathing. After a couple weeks of multiple episodes that we could get under control at
home, she had what I refer to as “the mother of all episodes” on July 13th.
This episode was by far the worst she has had and resulted in a transport to
the hospital via ambulance and a 9-day admission. The weeks following were, well a mess, and brought
feelings of complete helplessness, which, by the way, is the worst ever. She has lost a total of seven pounds, 3 of which were dropped after we got home from the hospital.
This new chapter we have entered with Natalie is due to the
onset of puberty – oh joy. While we were in the hospital, Natalie’s specialist
informed us that this is the “new norm” where things will be more unstable and
trickier to manage over the next few years.
Her care has had to be escalated with us being even more diligent about
her diet, sleep habits, heat intolerance and exposure to illness. It has involved additions
to her “mito cocktail” as well as a new medicine that has had to be built up
and increased slowly over the course of the month. It brought with it the
realization that the doctors don’t really know for sure how things will go with
her. Therefore, neither do we. In their words, no two cases are the same and predictions
are difficult to make. There is much that is and will be “unknown”. What we do know
is that with the escalation in care, her symptoms have become more stabilized
and no significant episodes have occurred for a couple of weeks. We also know
that she will have breakthrough episodes such as the one she had on the 13th. We just don’t know how often. When these
episodes do occur, each will come with a 5-7 day hospital stay.
Over the last month, things have gotten much better, but still vary day
to day. Natalie appears to be on a weekly
cycle, with Mondays and Tuesdays being more difficult than other days of the
week. We JUST got to the place where we can write a protocol for someone to
follow if she is in their care. We JUST hit the one-month mark on the medicine
last Friday (as in 2 days ago). We JUST
got to the place where she could have “play dates” again here at the house. We
JUST got to witness her eating three full meals in one day. She JUST got to the place where she has had a
handful of normal activity days, including one this weekend that wiped her out.
So yeah, I am not going to lie. I am scared. I am tense. I am nauseous. I do
not know how tomorrow will go, let alone this week, month, or school year.
In all of this, there is SO MUCH to be thankful for. First and
foremost, I must say that I am thankful every day for my faith in God. I
honestly cannot imagine what this whole ordeal would be like without that. When I calm my thoughts and still my mind, I
hear the soft-spoken, yet strong words, that have brought me peace for many
years, “I’ve got this AND I’ve got you”.
With this, I am reminded to take it moment by moment,
surrendering as I take each step. It’s a
bit like standing on the edge of a plank blindfolded. I have to take a breath
and jump, knowing that even though I have no idea what lays in front of me, I
am fully aware someone is there to catch me (and my baby girl).
In the words of my friend, her new 4th grade teacher, "Let's Do This!".
