Wednesday, July 9, 2014

when you're looking for answers {chicago with lucy}

I have this blown glass Christmas ornament that is hand painted.  It is so fragile and beautiful that every year I hold my breath as I remove it from the red velvet box and display it on the tree for everyone to see. 
To hold it too loosely 
or too tightly 
would be to destroy it.

That's how I feel about the past few days...
...like wrapping words around them for you might cause them to shatter into tiny unrecognizable pieces.
Here goes...

I left for Chicago searching for healing for Lucy.  I've returned as the one healed.
Lucy was diagnosed with two autoimmune disorders last October - Type 1 Diabetes and Graves' Disease.  
I will just say that the adjustment has been difficult and leave it at that.  
While we have gotten into a fairly good groove with the T1D, Graves' Disease has been a different story.  The original diagnosis and proposed course of treatment never sat well with me and so we've been searching for more information and different answers.  That search led us to Dr. Qin in a small Indiana town just south of Chicago.

After looking over all of Lucy's lab work from the past 8 months {she has her blood drawn every month to measure thyroid hormones and antibodies}, talking to me, and conducting a thorough physical examination, Dr. Qin suggested that either Lucy was misdiagnosed with Graves' originally or she is already in remission {or there is also the slight chance that she still has it alongside another condition called Hashimoto's}.  

On the one hand this is great news because this is what we had hoped for...remission.  On the other hand, her antibodies are high which indicates something is still not right.  According to Dr. Qin, the bottom line is that Lucy's immune system is slowly destroying her thyroid {similar to T1D in which her body has destroyed the cells in her pancreas}.  

Dr. Qin did not recommend that Lucy take any medication for hypo- or hyper- thyroidism right now because her thyroid hormone levels are within an acceptable range.  We will continue to monitor her levels and if she gets to a point where she needs hormone replacement therapy we can begin that.  Dr. Qin was very encouraging.  He said that Lucy looks very healthy and her body appears to be coping well with multiple autoimmune issues.  

However, he didn't have any answers or suggestions for me about one of my biggest concerns which are Lucy's mood swings.  When I received no insight in this area, I realized that was what I had most hoped to achieve during the visit.  I was desperate for a plan to do something about the catapulting back and forth between anger and sadness that she experiences on an almost daily basis.  It was hard to walk away feeling like I was still on my own with that.
I walked out of Dr. Qin's office 
satisfied that we had found a good doctor, 
encouraged by his analysis of her condition,
and also
devastated that her body is definitively fighting against itself on multiple fronts and 
discouraged that we don't have any easy answers about this emotional roller coaster ride we are on.

It was all I could do not to burst into tears.  But I held it together and tried to force down lunch with a smile.  

I drove our little bright blue bullet of a rental car back into Chicago, dropped it off, and the two of us made our way to Shedd Aquarium as I had promised Lucy we would.  She was so excited.
Hand-in-hand we walked across Grant Park stopping to examine flowers and pet puppy dogs.  I watched her wide eyes drinking everything in once we entered the building and as we went to take our seats for their featured show - 'One World'.  

I cried silently straight through almost the entire thing.  It wasn’t that the animals' performances were particularly moving…it was just that it was the first chance I’d had all day to sit down quietly with her cuddled up next to me and let the tears catch up.  They had been chasing me down since I walked out of the doctor’s office....biting at my heels.  

I sat there on that concrete step of the Oceanarium Auditorium, with beluga whales splashing in front of me, and let myself pull back to see a bigger picture.  Because of that change in perspective the tears wound up being born of love and not fear…for that I am grateful.  

The ones that would have fallen earlier in the day would have been full of lamenting…
Her body is officially killing off another gland?  
Now we have to pay attention to signs of adrenal failure too?
What if there is even more damage going on that we don’t know about?  
How are we ever going to make any changes and improvements if there are no more tests run?
What will I do now that I don't have an answer for her extreme emotionality?
I don't know what to do.

But the tears that ran soft and warm hours later spoke differently, like this…
This is my little girl...full of life and light.
I've taken her to 'the big city' for the first time in her life and there's a good chance she may actually remember it...a 6 year old memory holding on tight to all we experienced together.
I know her.  
I know that she won’t budge during this show because she loves animals and she is admiring those trainers who get to work with them.  
Those trainers are someone’s little girl.  
She could be one of them one day.  
Even if she still has mood swings and takes medication and checks her blood sugar multiple times a day she could still do that and be very happy and content.  
I know the things that make her happy - like stuffed animals and real animals and chocolate and riding her bike and creating art and having her back scratched and singing songs and dressing up like a princess...
I know who she is…autoimmune diseases and all.  
And I love her so completely.
I know her.
 

No one knows a child like her mother...what a precious and holy gift to be in possession of - the greatest earthly knowledge of a child...at least for a season.
And equally precious is the realization that God knows her even better.
Created her.
Sees every cell of her body.
Sets a unique purpose in front of her.
Knows what she needs and what she is needed for here on this Earth.
Will do with all of this what he chooses, regardless of my meddling and interference.
He knows her.
Later that night at the hotel we indulged in something special...
giddy with excitement we decided to order some famous Chicago pizza and eat it in bed!

As I picked up the phone to call, she looked up from the iPad and set her eyes on mine.  
I bet I know what you're gonna order, mama! she said, with ear-to-ear grin.
Mushrooms and tomatoes!
And I did.
She knows me too.

It's what it means to be family.
It's what it means to journey through this crazy, messed-up life together.
To know and be known by that precious angel-spirit of a girl.  That tiny human embodiment of light.
It suddenly felt like the greatest of all treasures that I held...carefully...
not too loose, 
not to tight.

Hold on.
Every day God is revealing more of who this child is who calls me 'mamma'.  He is uncovering shiny pieces of who he has created her to be and I am the one with the coveted front row seat.  I refuse to be too distracted by researching her condition or overanalyzing her symptoms, to just. be. her. mama.  
To love her
support her
encourage her
cheer for her
teach her…
and leave the rest to God…in whom I place my complete trust.

Every child in this world has her own special needs and challenges.
And every mama goes searching for answers at one time or another.

But this mama is back home and resting in this truth tonight...
for all the things that I still don't know...what I do know is more than enough.

5 comments:

BA Reko said...

All I can say is wow...and tears for you and Lucy as you journey through autoimmune diseases, but joy because you do it together...while under God's endless love and protection!

Kelley said...

and God knows YOU too Elizabeth. And loves you as much as he loves her!

Sabra Penley said...

Well, on the off-chance Lucy won't remember this trip, she will always have this moving account of it from her mama's eyes. Oh, Elizabeth, this post speaks so richly of your love for Lucy...and every mama's love for her child. You have encouraged me to look at the bigger picture with my daughter (who is now 28 and not around nearly as much) and cherish each and every moment. Praying for a cure for Lucy and continued blessings on all of you.

elizabeth said...

sabra - yes, you're right! oh to be able to see the big picture more often!

elizabeth said...

Kelly and BA thank you!