April 2018
Dear Maggie,
This year you started kinder....
and it's been really, really good for you....
and really, really, really HARD!!!!!!
And time is a thief,
because I can't believe you are about to be DONE with kinder.
WHAT?!?!??!!
You have loved school.
You love your teacher.
You love being with your sissy.
You love learning.
You are really brilliant!
But also, this year I started realizing something.
I noticed your constant stomach aches.
Your constant constipation.
Your overwhelming growing pains....
...that didn't seem to ever go away.
I noticed you weren't sleeping well.
I noticed your moods always seemed outside of your control.
You could keep yourself pulled together around others, for the most part.
But for me, your mama, your safe place...
You would often totally and completely fall apart.
.... and it was hard.
And baby girl, I started praying.
Praying more than ever.
Praying for wisdom.
Guidance.
And I just really felt in my mommy heart that something wasn't right.
I started taking you to the pediatrician.
The biggest question mark to me was your growing pains....
the pains that weren't going away....
the pains that caused you to choose to sit
and play in the dirt at recess instead of run around.
The pains that caused you to refuse to play basketball.
The pains that caused you to crawl down the hallway in the mornings
instead of walking when I'd ask you to get dressed for school.
The pains that caused you to have us carry you up and down the stairs.
Lots and lots of pains.
Honestly. At first I was feeling like you were being defiant.
Or strong willed.
Or just plain difficult.
I hate saying that.
But it's the honest truth
and this behavior was so new and so intense.
After of over a year with meeting with your pediatrician,
mixed with my insistence and nudge from The Holy Spirit,
we ran a handful of blood tests, and then more blood tests.
*You are SO BRAVE*
but we wanted to dig deeper.
We needed to dig deeper.
We just needed more.
We needed to look "under the surface".
I needed to look until we found something.
Because I just knew something wasn't right.
Because I love you.
We love you.
We cherish you.
And we knew you needed us to advocate for you.
Anyhow.
You were so outrageously brave.
And as a mom, it is so very exhausting coaching kiddos through these moments of bravery.
But I wouldn't miss being the one physically there with you for the world.
So, this time in February 2018 we had your blood draw...
and you did great....
and then we realized we had 2 more tests we needed to do.
:( Sad sad sad.
So she had to draw blood from your other arm.
And you were AMAZING!!!!!!!
and feisty, and so cute!!!
Like, for real! You inspire me.
Anyway, we were told we would get results in 3-5 business days.
I stayed by my phone waiting for them.
And the call finally came at the end of the 5th business day.
My Aunt Iris had come to stay the night with us
so she could attend your Recitation the next morning,
so your Dad had taken you and Emily to Panera for dinner and then
on to Basketball practice.
Oh how you HATED basketball.
This was your first year.
And it was rough.
But we really stuck to it to begin teaching about
how important it is to not give up when you commit to something.
Anyhow. I got the call and your doctor asked if this
was a good time to talk and asked if
I was in a quiet place or would like to sit down.
Blah.
My heart sank.
This means it wasn't the quick, all is well.
But I wasn't fearful.
Even if it was the worst of news,
I knew you weren't feeling well
And this mama was ready to find answers and relief.
So I was standing in the kitchen, at the counter,
and I got out a note pad to start jotting notes
since clearly there was going to be a lot to this call.
Your CBC panel was BEAUTIFUL!!!
This is where signs of Leukemia would likely show up.
I learned this in the waiting period of those 5 long business days.
And I asked your doctor maybe 5 times over the course of the call
"So this really doesn't look like we are looking at leukemia, correct?"
I don't know why I kept asking,
but I have read one too many blogs and stories
about brave mamas walking that road
and I wanted to be as clear as I could.
So what was discovered was:
Two of your tests came back abnormal.
Your Celiac Panel and your ANA Panel were both abnormal.
My heart sank.
Even now, two months later, my heart sinks just thinking about it.
But not so much out of fear,
just the fact that something is wrong with my baby.
First. I don't want anything wrong.
Second. Didn't you go through enough "Medical issues" when you were born?
I kinda want to scream THIS ISN'T FAIR..
.... but that doesn't help at all.
But it feels good at the moment to say it,
so excuse me for a moment:
it's not fair!!!!!
When I was on the phone call, I felt literally held by God.
My thoughts were focused.
Fear was at bay.
I was able to comprehend.
I even got off the phone, didn't cry,
grabbed my Aunt, headed to get dinner at panera,
and together we went and watched the girls at basketball practice with Will.
At that practice, you were crying and didn't want to run around....
and instead of seeing defiance, I saw a child that has sooooooo much more going on.
More than we had any idea of.
More than we even knew what was going on.
But it felt good to be sympathetic in a new way, and yet still urge you to do your best.
BLAH!
Parenting is HARD work!!!
So while we were there I told Will about my call.
I kept it positive, upbeat.
I let him know that we didn't know anything yet
outside the fact that
Celiac and ANA.... abnormal.
And our pediatrician mentioned with all the growing pains,
perhaps we are looking at Rheumatoid Arthritis.
Our plan of action was simple:
Try to get Maggie into see the specialists she needs to see.
Don't tell the girls, because we don't want fear to spread, and truly: there's no diagnosis yet.
Just abnormalities. WHAT DO THEY MEAN?!?!
Not knowing if she's full blown celiac or what,
Not knowing if she has Rheumatoid Arthritis or a totally different Auto Immune Disease,
we knew we needed to (and could!!!) remove at least gluten from her diet immediately.
We knew she has been physically hurting for a while.
<<<insert panic, because this girl has a serious toddler diet of all the carbs and gluten filled things. eek!>>>
Spring Break week, Emily had a Beauty and the Beast camp she was doing,
So Maggie and I had a big talk about how her Doctor called
and we think her body may be allergic to gluten...
so naturally, we went out and bought ALLLLLLLLL of the
gluten free snacks and cold turkey began her switch.
I also learned that almost all "gluten free" things are
loaded with tons and tons of extra sugar.
So we have been trying to find a balance of finding
tasty snacks, but truly just switching to a more "whole foods"
approach because we don't want to also create a sugar problem.
We want to find health.
Anyhow. It is hard to explain to a 5 year old about food allergies.
But we just went with a dramatic and silly explanation of how
gluten seems to attack her body *boom*boom*bang*boom* and
it really trys to beat the gluten up as the bad guy.
... like, if a bad guy came into my path, I would try everything I could to fight him.
Well... her body is attacking the gluten...
and she feels it in her tummy aches,
and in her growing pains,
and in lack of sleep,
and in her crying tantrums she has with me...
I explained how that's not all her doing that....
it's her body.
Attacking the bad guy in there, and doing everything it can to try to protect her.
.... that seemed to work.
So, pretty cold turkey, we made the switch.
But one night we were on a road trip and I wasn't prepared, so we all
had CFA sandwiches.... (I figured, how bad could one cheat be)....
well she was up till 1:45 in the morning, had a tummy ache, emotional, and didn't feel well.
Sheesh. Lesson learned.
*Mind blown*
I can't believe how much food truly fuels our bodies.
Like, I've heard that.
But seeing it like this first hand is SHOCKING!!!
Behavior. Pain. Sleep.
Wow.
In one week, she started to become herself again.
We've met with a GI.... and that wasn't the most helpful appointment of all time.
LOL.
It was less emphasis on her diet, and more emphasis on medical testing and medicines.
But he was happy to hear she seemed better by diet change.
Any who, we will be meeting with a nutritionist that comes SUUUUUUPER highly recommended from many friends, and that will be more up our alley I think.
I'd much prefer food to heal her body from the inside out than to use medicines or tests.
And honestly, I've seen such improvement, I am happy to keep going that route.
I'm not apposed to medicines. My girls use many for allergies and asthma....
but there's already clearly been some healing taking place.
And I want to go with that. :)
But in Feb when we started getting in touch with
Rheumotology Departments, the soonest they could see us was:
"Hopefully September"
So frustrating. On so many levels.
My first frustration was selfish.
That's not an acceptable timeline for my baby...
My second frustration was:
How SAD that this specialty that I didn't even know existed
has such a need for a long wait time :(
So the mama bear in me started reaching out to lots of different locations
... well one of those locations were able to get us in....
Today! April 19th.
It's been a long wait
but it's here.
And I am PRAYING for answers.
As much as being Gluten Free has helped,
you aren't 100%, that's for sure.
Two nights ago your leg was hurting so bad you woke up
crying and in so much pain, so we slept together that night
on the couch.
Actually, Emily's allergies were having a flair up, so all of us, even daddy slept on the couch.
#FamilySleepover
Then this morning, your neck was hurting,your tummy hurting and your leg and knee hurting.
It breaks my heart.
And yet I'm thankful I know you aren't just making something up, or being dramatic.
You really truly, hurt.
For today, I am praying for the following:
-the beginnings of answers.
-of more digging for what in the world is going on.
-a diagnosis/answer as to what is going on.
-always praying for healing.
-for relief!!!!!!
-for a real option of what the next steps are.
and I want to say it because I never truly understood.
There are some people who are "Gluten Free" or who have dietary restrictions
that do NOT want them.
It's not fun. It's not funny. It's not a fad.
And Maggie girl, I know you didn't choose this.
It's 100% for your health.
And sweet 5 year old girl.
You are brave beyond belief.
And we have had so many people who have been in our corner supporting us in this time,
what a gift they have been!!!!!!!!
You aren't alone.
You are beautiful.
You are so very loved.
And even while hurting,
and even in the unknowns,
you have the Joy of The Lord which shines so brightly through you.
Sometimes as humans we can forget that so much more is going on inside of us.
I look at this picture below and would never think anything is wrong.
This has been a HUGE reminder to me
That everyone is facing battles we know nothing about.
And kindness always wins!!!!
Maggie, I love being your Mom!
You are one of the biggest learning lessons in my life!!!!
We will get you better. We will do all we can!
