Saturday, February 11, 2017

8-year anniversary of our diagnosis

Today, we are remembering the life changing moments that we experienced 8 years ago today.

Several years ago, my husband and I were reminiscing......

"It's hard to believe that it's been 3 years," my husband said the other day.
"No it isn't," I responded.

I was thinking....of our most recent struggles with our insurance company,
and how my conversations with those people has stressed me to the point of tears.

Or.....of those midnights when she has been sitting in front of the toilet with her stomach just burning with
pain and nausea from a mixture of a stomach virus and high ketones.
With tears pouring down her face, she whimpers "Why do I have to have diabetes?"

It was like we were handed a newborn again......only with no warning.
No preparations.
Nothing to care for this newborn.
Having to learn how to train ourselves to take things with us when we leave the house, scheduled meals, routine doctor visits, nightime feedings, mental exhaustion.

Or.....of how far we've come from those early weeks of having to stick with a set amount of carbs for every. single. meal so we could learn how to wrap our brains around counting the carbs for each food she's eating and drawing up the insulin into a syringe {making sure we have all the supplies with us if we're away from home}
and writing down each and every blood sugar number on a chart.
And here we are with insulin-to-carb ratios and a little more freedom with insulin pens.

But yet, we still have a long way to go.
Her numbers are still wacky.
Her A1c is not where it should be.
And that is constantly gnawing away in the back of my mind.

8 years ago we walked into our pediatrician's office not knowing why she had these horrible,
sporadic headaches that were relieved with one bout of vomiting.

I should have known for sure by just looking at how emaciated she was.....

but that had come on so quick we hadn't really noticed.
This picture was taken 3 weeks and 3 days from her diagnosis.

There were other obvious signs going on that did finally prompt me to get her in to the doctor, but if I had known at the time what a crisis her body was in I would've just rushed her to the ER.

But thankfully, our loving Heavenly Father had this all planned out.
He knew when she was born that this day was coming.
Would we change things if we had that option within our power?
I don't know that we would.
It is really hard some days.
But we know that we are being prepared for something right now.
We don't know what that is.....but it's an assignment.
A mission.
And right now, we're in boot camp.
We are so thankful for what we're learning about how to minister to those families who are in crises.
Maybe at a deeper level than others who've never had a medically fragile child.
Or maybe we'll meet some more folks along the way who, like us,
have a child with Type 1 Diabetes that we can be a blessing to and vice versa!

The journey has been difficult....I'll not lie.
But it is made sweeter because we must be on our knees...every day in conversation with our Lord.
Our eyes ever on Him, lest we like Peter who was walking on water toward Jesus, lose our focus and begin to sink in fright because of the storm swirling around us.

5 years ago celebrating Aryn's 4th birthday!!

She's almost 17 now.
Puberty was hard on her body.
The surge of hormones and growth and external life changes kinda piled up on her.
She spent a lot of time retreating from all of it.
Not really wanting to meet things head on.

So her A1C was dangerously high for months.
No matter how much insulin we gave her.
It made me crazy some days.
So much so that her endocrinologist wanted us to spend time with the pediatric psychologist for a couple months.
She was even given a fish or two by the clinic there as an experiment to see if caring for a small pet encouraged better diabetic management.
It was only when the idea of her starting driver's education came up that she had a new found motivation.
She owns this now.
We bought her a FitBit two Christmasas ago which she loves.
She is medicating properly and thinking about healthy eating and proportions.
Her A1C at our last check-up was down to 8%!
We're working to get it down even more.

And now, she has plans.
This girl wants to go on her very first mission trip this summer. 
(UPDATE:  Which she did.  To New York City!  And she rocked it!!!)
I still feel that I need to go along with her just to make sure she's on top of the activity and diet changes, but this is something she came to us about!!
She wants to go again in the summer of 2017 and is asking about going on an international trip as well (GULP!!!)
She is a junior in high school this year, and working very hard toward graduation in the spring of 2018!  She also started working part-time at our local Sonic late last summer as well!

God has plans for this girl.
And we don't want anything to stand in her way of accomplishing what she feels God has called her to!!


Wendy Rose said...

Congrats on the 3 year year rolls into the next into the next...we're almost at 7.

May the next 100 years be filled with health, happiness, and target BG's!

Donna said...

Wow, I can't believe it has been seven years. Ashlyn is a beautiful young lady. They are all growing way too quickly.:((

Chela Reyes said...

Dear Brenda-Thank you for sharing with us about your family's journey. Our daughter was diagnosed with Type one (surprise: she's eight), in December 2016. Right before Christmas. We had no idea what in the world was going on until after a urine sample came back to her regular doctor and were on our way to an ER. I had no idea what was wrong with our daughter except that she looked depressed (dark circles under her eyes), she felt nauseous, became more and more thirsty at night, started waking in the middle of the night having almost wet her bed. I was determined to find out and although I couldn't put my finger on it, I took her to the doctor and said "look, I don't know what is wrong with my girl, but I know something is not right. This is not how my daughter usually is. She's full of life, vivacious, happy, singing all the time!" She was already having a hard time waking up each morning. The day of the ER visit and subsequent diagnosis and hospitalization, I had to force her awake. She had a few blueberries and off we were to the ER, then to Children's Hospital in Fairfax being trained three days for a new normal. And here we are by GOD's grace. All the way my Savior leads me...Sigh. By the way, Barb C shared your blog link with me. Praying for grace each moment. I now know what life with a child with Type 1 is. Every day we pray that our girl won't get the "thing that's going around." God has been gracious and he will give grace should she take sick. Your blog posts have given me hope to press on for the Lord is with us! P.S. I know a link has not been established, but I believe this came as a result of the last MMR vaccine she received prior to us moving from CA to VA in 2014. That's another can of worms though and regardless, we continue to pray for a cure and for us to continue to trust in our sovereign Lord.

Brenda said...

Hi Chela!!!
I think my neighbor, Sharon Sassoe, who met you on her trip to VA to visit with Barb and Marty told me about your daughter!! I'm so glad you found us here and I hope that you can identify with our family and find some hope with this disease!! We were definitely overwhelmed and shocked to learn how difficult it is to manage and that it can be very scary at times. But God is good and we have felt His presence every step of this journey! He has watched over Ashlyn when we couldn't or when we didn't know better!!! It IS overwhelming, but you are not alone!! God will give wisdom!!! Listen to your gut!! Never ever feel silly asking about even the tiniest concern!! You can ask me anything at any time!!! I'm on facebook too!!! God's got this too!!