This month
marks six years since Ayla began showing symptoms of a disease that would take
months for doctors to figure out and diagnose.
Months of ruling out cancers, arthritis, viruses, and infections. Months of watching her deteriorate before our
very eyes with nothing we could do to stop what was happening or even know of a
way to help her. Followed by years of treatment
after treatment, test after test, needles upon needles upon needles upon
needles…
This time
six years ago, Ayla was 20 months old.
Prior to that she had been a very busy, silly, quiet girl with a joyful
face and hands that loved to play and dig in the dirt. She walked and ran. She climbed up ladders and went down
slides. She scaled coffee tables and
dinner tables. She followed me around
and clung to my legs. Then that all
stopped…
It occurred
to me this morning that a lot of people in my life now know nothing of our
battle for our daughter’s life, her health, her joy. Many are still around that walked with us
through it or offered to be the hands of feet of Jesus to us when we were so
overcome with grief and pain and sometimes, hopelessness. Many of you who aren’t in our day to day life
may still wonder and pray for Ayla and our family and I am still so thankful. It’s been a while since I have given any kind
of update…but here I am. Beginning to
write it out…
Life has
been busy this last little while. Ezra
is in 5th grade now and Ayla is 2nd. We homeschool so most of my days are spent
teaching them how to read and how to divide along with doing a load of laundry
and making meals. Evenings are spent at
piano lessons and hockey practice or karate and church programs. But don’t worry, we are purposeful is carving
out time to just be…just be together. So
I haven’t been updating on Ayla and our family.
I am living life.
For those of
you who didn’t know us a few years ago, or wonder what we are talking about
when we talk about those trying years; this is for you too.
Long story short
Ayla was
eventually diagnosed with a disease called Eosinophilic Fasciitis (whoa…been a
while since I typed that. I have to go back
and check my spelling!). What happened
was she got a small twinge of pain in a hip joint and progressed to the other
hip, then to other joints, then her skin got shiny and hard to the touch and
swollen…oh, so swollen. Nothing like
this had been seen before at our local hospital, so we went to London Children’s
hospital. And after checking for pretty
much everything they could possibly think of there and in Toronto at Sick Kids,
they thought they would bring in a retired dermatologist from the Windsor
area.
So after 4
months of bone marrow draws, cat scans, MRI’s, labs upon labs, x-rays, EKG’s,
ECG’s, breathing tests, and on and on; an old man dermatologist walked in and
looked at her and said it is one of these three things; Scleroderma, a form of
Lupus, or Eosinophilic Fasciitis. We
needed to do a skin and muscle biopsy to find out, and low and behold it was
the rarest of the three, what we would grow to know as EF. This meant that her fascia was being attacked
by her immune system through her whole body.
This meant her skin was not pliable, movable, stretchable, and bendable. Which makes moving and growing particularly challenging;
especially they don’t have a clue how to make it stop doing those things!
Once the
diagnosis happened we found out that she was the only child her age, almost 2,
in the world that had ever had this.
They didn’t know what caused it, how to cure it, or really…anything
about it except that it’s auto-immune.
So…shut off the immune system and put her on steroids to get the
swelling/inflammation to go away while they tried to figure out what else might
help.
At this time
we also started her on Physical and Occupational Therapy, she was now 2 years
old. We were told she would likely never
walk again, and if she did, it likely wouldn’t be well enough to “walk through
a mall someday with her friends.” We
were so, so broken…she was so so small.
And this was so so UNFAIR. But
hope of at least standing and taking some steps when at the time we were
carrying our 2 year old everywhere and she was unable to even stand on her
own. Sitting unsupported was a challenge
as well. Most muscles were gone; she was
completely and totally emaciated. So we
got out all of our old baby equipment (high chairs, excersaucers, walkers, etc.)
for our 2 year old and used it for her…again.
Eventually,
with the help of John McGivney Center, she walked. She hated every ever lovin minute of standing
and walking, but she did it. Fits of
anger and rage and all…not a smile to be seen from her. But she did it. And after THEY said it probably wouldn’t
happen.
Two weeks
after walking on her own (without support of braces) she fell and broke her
femur in her right leg. Which anyone
that knows a femur break…it’s a hard one to cast and wait to heal. Her heal time was more because of medications
she was on. So she was wheel chair bound for another 8 weeks. Then a few weeks after that cast came off,
she fell and broke her tibia in her left leg.
So another cast…another long heal time.
But at least with this one, they made her special shoes so she could
walk and stand and build up her bone strength.
All these broken bones were results of long term use of steroids and not
being mobile. The last of the broken
legs came on her 3rd birthday, while we were in Florida at Disney…oh
and did I mention she had strep that week too and the travel insurance we had
didn’t apply to her? Now I can laugh, SO
REDICULOUS.
So, Ayla
regained her strength. Her ability to
walk grew into running then into jumping, into tricycle riding…Do you know what
the definition of a run is? It is when
the heal of one foot and the toe of the other are both off the ground at the
same time. The joy to see both feet
leave the ground even for a millisecond!
All during
this time she was still seeing many doctors and they were trying to figure out
how they could get this disease to go away.
None of it was working…home injections, hospital infusions, oral meds,
diet changes. NONE.OF.IT.DID.ANYTHING.
Except stop further damage.
On top of
all this going on, Ayla’s joy was non-existent.
A smile was almost never seen. A little
girls laughter and giggles…they just weren’t there anymore. And THOSE, THOSE were harder to get back.
Do you know
what it’s like to have people look at you and say, “your daughter…she just
doesn’t seem to have any joy.” We would
try. Man, would we work for a smile or
grin or the long lost giggle. During all
that physical pain, she wasn’t able to grow and develop emotionally like a 2/3/4
year old would. She didn’t know how to
interact with other kids at preschool.
She didn’t trust them. She was
afraid of so much. Even joy.
Through so
much prayer and the persistence of preschool workers (you know, they just
babysit, right?) and social workers, some joy and playfulness began to shine
through. I remember her first friend she
made at school, Maddy. I shed some tears
knowing she was finally figuring out this joy thing…
Now
I’m thankful
that’s a distant memory. I’m thankful
all of it’s a distant memory.
Now she
loves music, she loves to dance and sing.
She is learning piano and loves it.
She loves to play pretend and do crafts. She loves to laugh and giggle
when playing games and making silly faces.
Her laugh still makes me teary sometimes because I thought it would
never return. She loves to swing and
play in the back yard. Right now her
toothless grin is enough to make anyone melt.
There was so
much more than happened in those years.
Too much to list here. Too much
pain to relive. Too many happy tears to
cry again.
Something
that happened during those years was my faith in and ever present God was
solidified. That might seem strange but I
know I physically could not get up and face each day without being strengthened
by the immeasurable strength of a God I really didn’t know before all this
happened. I didn’t know God as a healer,
just as this distant creator. I didn’t
know God as the hope giver. I didn’t
know God…not God really, like I did through that and to some extent now. I’d like to think I know him just as well
now, but through pain and suffering loss, do we truly begin to feel and
understand how close He truly is to us.
Sometimes
now I wish I had that same dependence where I literally didn’t know how I would
get out of bed in the morning, how I would mother both of children, how I would
be a wife to my husband. Sometimes now,
it’s just all too much me. Myself, that
pulls me out of bed each morning.
All this to say,
the last year and a half has been pretty uneventful. Last fall, Ryan and I decided that we were
done medication. She had been on meds
for 5 years, none of which were seeming to be doing anything and the thought of
the havoc they were wreaking on her system, I could bear no longer. We both felt led in prayer to get her off the
meds and trust that she would be okay.
In her fall
appointment with her specialist, we brought this up. She was supportive of it, barring any ‘active
disease’ began to present itself again.
We began to wean off meds and this past April we were given the option
to just stop completely because she was showing any symptoms of the disease becoming
active again.
Ayla has
been happily off meds for 6 months. She
has had no signs that the disease is active again. We go visit the specialist next Friday, the
16th for a check-up.
Now, Ayla
still has what we refer to as kind of ‘damage done.’ Her skin does not move and stretch like yours
and mine. She can’t bend and twist as
well as most 7 year olds. But she grows
like crazy! This was one major thing
they were afraid of, that her skin wouldn’t stretch and accommodate growth of
limbs. That she might have problems with
her limbs and body parts not being symmetrical.
Well, she is now taller than most of her 7-10 year old girl friends (and
most boys too) and has gained weight to match that growth.
Thank you
for taking the time to learn about or catch up on our journey with our
beautiful, smart, busy, quiet, thoughtful, generous, creative little girl,
Ayla.
Whenever you
see a little girl smile or hear her giggle…remember to rejoice.