Type 1 Diabetes: A Letter To Myself on Diagnosis Day

March 23, 2019 will be engrained in my memory as long as I live. As much as I would give anything to turn back time and somehow change the events that unfolded that day, I know it will forever be one of the hardest days of my life. Almost 3 years later, here's what I would say to myself then:

It seems unbearable. It is unbearable. You were just told your child has an incurable disease that could kill them, and you're now expected to pick your jaw up off of the floor and soldier on. You get to learn about insulin, basals, boluses, hypoglycemia, and glucagon- all words that were foreign just 24 hours ago, and you would have been perfectly happy keeping it that way.

Grieve. Grieve for your child. Grieve for the many shots and finger pricks your child is going to endure. Grieve knowing your child may very well feel "different". Grieve for a piece of their childhood innocence being taken from them. Grieve for yourself. Grieve the carefree visits to the swimming pool where you didn't have to worry about your child's blood sugar dropping too much from the activity. Grieve being able to put your child to sleep and not worry about their blood sugar reaching a dangerous level. Grieve sleeping through the night, because you won't be doing that anytime soon. Grieve your peace of mind. Just grieve. 

And now, be thankful. It feels like there is absolutely nothing to be thankful for right now, and that is okay. But hear me out: be thankful. Because there is, in fact, so much gratitude to be had. Your child is in DKA and hooked up to IVs galore, but the diagnosis came just in time. There wasn't much time left to figure out what is wrong, and the doctors caught it in time. Your child is alive. Before 1920, Type 1 Diabetes was a death sentence, but it's not anymore thanks to the discovery of insulin. Inventions like insulin pumps and glucose monitors are luxuries people didn't have fifty years ago. Be thankful, even now. Be thankful. 

It's going to be a long time before life feels okay again. Everything is so scary, and it will continue to be scary in the days and weeks to come. Now, here comes the 60 second pep talk. This awful thing just happened that you have absolutely no control over, and it feels so unfair. But, you have the power to write the narrative from here. You can let this overwhelm you and overtake you, or you can face the challenge head on. You are braver than you know, and so is your sweet, beautiful baby who's life is forever changed. You owe it to him to learn as much as you can about this diagnosis so that you can still give him everything in life you always wanted to. So choose today and every day not to let diabetes win. Acknowledge it. Respect it for the life threatening disease it is, but face it head on and show your son that his circumstances do not define his opportunities. He can still do anything and everything he puts his mind to, and the first person to teach him that is you. Soldier on, and in the words of my Nana, stay strong, little warrior. 

A Life Changing Diagnosis

I wrote this post on March 27th but am just now writing it out on the blog. A lot has changed since then, but I wanted to document the raw emotion we felt that day after coming home from the hospital. Here we go...

I’m not sure where to start, so I’ll start from the beginning. Last week, Preston woke up Tuesday morning sleepy and lethargic. He continued to be sleepy and lethargic the next couple of days, so we assumed he was going through a growth spurt while fighting off a little cold of some sort. By Friday, all he could do was sleep and his breathing was very labored. We took him to Urgent Care Friday night, and he was diagnosed with exudative tonsillitis. They said after a few days of antibiotics he would be good as new. Saturday morning, he woke up with even more labored breathing. His little body was working so hard to breathe, and my gut told me something else was wrong.

After a lot of prayer and gut instinct, we drove to the ER of the Children’s Hospital Saturday morning. Preston slept while he struggled to breathe and threw up right as we arrived. In my heart, I knew he didn’t just have exudative tonsillitis. It didn’t explain every symptom he had. I had an out of body experience walking up to the ER holding our sick baby. I felt like we were walking in slow motion with no idea what was about to happen, and I said a prayer that we would all three walk out of there.

We were immediately admitted and they started running tests. They gave him breathing treatments, did x rays, and hooked him up to a machine to help him breathe through his nostrils. He hated it all but was too weak to fight it. He threw up again. The x rays showed he was severely constipated. The doctors told us constipation combined with the tonsillitis was what was causing the labored breathing and other symptoms. They also started talking to us about him being a mild asthmatic. I was so frustrated and held back tears. In my heart, this still didn’t provide all the answers. They gave Preston an enema to help him poop and prepared to send us home. The doctor came in after the enema and looked concerned. He said the labored breathing should have subsided after the enema, yet it was still just as bad. He ordered blood work, and an hour later, we had our answer. Two doctors walked in with very serious looks on their faces. One doctor looked down at us and said “We know what’s wrong with your son. He has Type 1 Diabetes.”

My world completely stopped. I was shaking, couldn’t breathe, crying, yelling through the tears, gagging... how in the world could God let this happen to my baby?

We were rushed up to the pediatric ICU where they immediately put Preston on insulin. His blood sugar was 593. A normal person’s blood sugar is 90. He was in a state called Diabetic Ketoacidosis, and he was literally fighting for his life.

We stayed in the PICU for 2 days where they pushed insulin and fluids and checked his blood sugar every hour to make sure it was coming down. Preston wasn’t sedated, but he was basically sedated. He was so lethargic and out of it, and he was still struggling to breathe. His body was working so so hard. After 2 days in the PICU, his blood sugar was down, and he was no longer struggling to breathe. His little spirit was so broken, and he had no idea what was going on.

We were transferred out of PICU and onto a regular floor for the next 2 days. They started teaching us how to give him shots and check his blood sugar. He cried every time. So did I. He gets at least 9 finger pricks/shots per day, often more depending on his blood sugar. It’s awful, and at just 25 months, Preston doesn’t understand why we keep doing this to him.

I keep praying we are going to wake up from this nightmare, but we never will. I don’t want this to be his life. He doesn’t deserve this. Our lives now revolve around counting carbohydrates, designating specific foods to be eaten at certain times in the day, checking blood sugar, administering insulin, and hearing our baby cry every time.

As much as I don’t understand why God chose this path for our sweet boy, I spent some time walking around the PICU while we were there. There were parents who would trade their diagnosis for Type 1 Diabetes in a heartbeat. There are parents that would give anything for this to be all they have to deal with. Perspective.

Lastly, amidst the heartbreak, there are many things I am truly grateful for. God answered my prayers, not necessarily in the way I was expecting or wanting, but I prayed that all three of us would walk out of that hospital, and we all did. I am grateful for Parker. He has been our rock and learned the ins and outs of everything we need to do while I was too emotional to take it all in. We are in this together, and he has been one heck of a teammate. I’m thankful for my mom and sister who dropped everything the second we got the diagnosis to come stay with us. Their help and support has been invaluable. We’ve told very few people about this so far, yet the outpouring of love and support we have received has been incredible. This is a lifelong journey that we never could have predicted, but God is good. Our baby is alive and well. He was diagnosed just in time. He very literally could have died, but God led us to a hospital that could help him and gave the doctors foresight to run the right tests and give us a correct diagnosis.

Today was our first full day at home, and we all survived. We covet your prayers as we enter into this new phase of life. We are still immensely blessed, our baby is smiling again, and we will all get through this one day at a time.