Ramblings of an Emotional Mother

The World Changed a Little

This pandemic has been around for almost an entire year now. However, 2020 will be remembered by our family very differently. We got a call nearly a year ago that changed alot for us. "We believe your child is in remission." We cried...alot. It would embarrass him to high Heaven if he knew I wrote this post, but sometimes the great stuff needs to be shouted out so people remember this world is not just full of "suck."

Austin was diagnosed with Graves Disease at five years old. My mother-in-law caught it. We took him in to appease the concern, and were told that we were getting an emergency referral to Marshfield Clinic. We were there within the week. They asked questions about symptoms, to which we answered, "Yes, but isn't that normal for growing boys?" We felt like failures as parents for not noticing. We decided out of the three treatment options to try medications. Years 6 and 7 were terrible. He hated the Dr, hated his body, and thought life was unfair. He was tired, sweaty, his chest hurt, and every joint in his body ached. He was told sports were off limits, playing hard was off limits, and being in the hot sun too much was a no-go until things regulated. You don't know our kid, but this was the end of the world to him. He wanted to play pro baseball when he was three. He was told he would never run a mile.

He did play baseball, ran up and down the football field, wrestled on the mats, and ran up and down the court in basketball. His favorite position in baseball became catcher, which I hated at first. His heartrate would scare the crap out of me, his joints ached after every game, and the heat was terrible under that helmet. I went to his 5th grade track meet and watched him finish the mile. He was slow (he got that from me), but the proudest kid I had ever seen, and to me he was the fastest. He learned his own body and limits, and stopped needing me to check on him. He told me to sit down at his games, and told people, "Enough" when needed. He grew the heck up and I have no idea when or how it happened.

He never quit. He never gave up. He became the toughest SOB I know. He sprained, tore, twisted, and pushed the limits of every part of his body. Even with remission there are after effects that may never go away, but shout out to him. Shout out to being brave; to walking into blood draws alone as years went by, into learning his body does not suck, taking pills when he hated it, and learning what it took to get where he wanted. Shout out for hearing he couldn't do it and doing it anyways. Shout out to his coaches through the years that needed him to play but cared about him more than the win, to his gym teachers and classroom teachers who made him sit out even when it made him mad. The Drs were never bothered by my frantic calls, and either were our families. Shout out to the mom of his friend who brings him home at midnight because he still has trouble sleeping, and to every person out there who gave him the ability to be normal and fought for him with us. You have absolutely no idea that you will be remembered as being part of the best team he has ever known.

Shout out to every freaking kid who gets childhood stunted, and every kid who fights back. Shout out to every parent who fights with them, win or lose. Shout out to fighters in general, no matter your illness.

Kid diseases suck! Some kids fight and lose. This could be worse. We could be praying for his life instead of praying for his continued healing. We are lucky there.

Maybe remission will not stick. The point is he now knows he can fight and keep on winning. Shout out to the greatest freaking life lesson ever; the one my son taught me.

Type 1 Diabetes. January 20, 2023. That's what the Nurse told us. A checkup I pushed for that turned into something much more. Five hours of sitting, being poked, changing rooms and Drs...that's what I finally pried out of them..."Type 1 Diabetes." I plan to spend a lot more time pouring my feelings into this, but for now, here are my current thoughts as I see alarms going off. It's 10am.

We've been at this for five months. It feels like five years. As I type, an alarm notifies me for the second time in 10 minutes; 65 and dropping. Most people will never know what this means to our family. It means moments of panic, minutes of time again taken from our, "Healthy child," while we check in, possibly hours of fighting that, "65," and in the end, silent tears from myself. Because it isn't fair.

Six years. Six years of health is what my child was given before his first Autoimmune attacked, destroying his pituitary gland. 15 years before an illness caused another Autoimmune to attack, this one destroying his pancreas. Now he will live a life of needles, alarms, medications, and unknowns. As a parent, I fear for his future for other reasons now. What happens when he moves away? What happens when he sleeps alone with nobody to wake him at 3am when an alarm sounds. What happens if he can't afford his medication?

Here's what I know now that I didn't know five months ago. I have been forced to learn, but he has been forced to grow and mature; to take on life differently. I have learned that while I thought my child was brave, smart, and strong before, that he was nothing compared to where he is at now. I have learned to trust him. I have learned to appreciate smaller things. I have learned to fight different battles. I have learned that five months is better than day 1, and five years will be better than today. I thank God daily for a child I still have; for a child that is still mine and needs me.

For everyone on day 1, it's ok to cry. It will be ok to cry on month 5 and year 5. Cry today, and cry whenever you need to. It's exhausting. It's emotional. It's a load of BS! But it does get easier. It becomes something a little less unfamiliar.

My child is beautiful. He's mine, and I will take him any way the universe allows me to.