I recently asked my mom if she would be willing to write a guest post for me on what it is like to be the parent of a Type 1. I wanted to hear her perspective on how that day in October 1992 felt like for her. Thanks, Mom, for all you have done for me. Love you!
A Mother of a Child with T1D
My daughter has asked me what it felt like for me when she was diagnosed with diabetes all those years ago. It has taken me a while to respond because I have pushed those painful memories so far back in my brain, but here goes…
On that day in October of 1992, we knew something was wrong but had no idea what. She was drinking a ton of water, going to the bathroom constantly and losing weight. We were on a trip to East Texas with family when my cousin (whose husband had T2D), suggested we try some ketone strips just to rule things out. We got home, went to the store, bought some and it immediately registered as “black”. It was a weekend so I called the ER at Medical City to get advice on what to do. The nurse said to bring her in ASAP.
Then came the diagnosis…she had diabetes. NO!!!! She was only 17 yrs old! This can’t be right! But it was. I think we were both in shock those first few days, trying to absorb everything the doctors were telling us. They kept her in the hospital for a week trying to get her accustomed to what her new “normal” was going to be. I was with her every step of the way, but still couldn’t wrap my brain around it. She had such a bright future and all we were hearing was gloom and doom. So I would leave the hospital every night and have a good cry on the way home.
For me, I just wanted to take away her pain and confusion. As a parent, you want to shield your child from anything bad. I couldn’t do that with this and it literally broke my heart.
3 years went by and she was somewhat stabilized and she was off to college (3 hours away) with her pump. I drove down every chance I got to make sure she was okay. One weekend I was checking into a hotel in her college town and the clerk answered the phone, looked at me and told the caller that I was standing right there (I had gotten there a couple of hours earlier than planned). Turns out it was her boyfriend. She was at his house, throwing up and was really sick. Could I get there now? I raced over there and my poor baby was so very sick. She couldn’t even stand up by herself. We got her in the car and I again raced to the local ER. Oh no! She had gone into DKA, and at the time we had no idea what that even meant. Another scary, heart stopping unknown. They put her in ICU for a week and kept telling me it was good I got her there when I did. Like I wasn’t scared enough 🙂 (This was not a planned trip so it was only by the grace of God that moved me to go that weekend). Side note: at that particular point in time, I was being told by Neurologists that I had a brain tumor and was also scheduled to place my Mother in a nursing home that week. But I wasn’t leaving Shannon for a minute no matter what was happening in the rest of my life!! [We found out a few months later that I did not actually had a tumor, I was dx’d with Multiple Sclerosis, but it was still a very stressful time for all of us.]
They sent her home after the week was up and life went back to her new “normal”. Then a few months later I received a call in the middle of the night from her college roommate saying she was back in the hospital with DKA. I jumped out of bed and literally raced those 3 hours to get to her. She spent another few days in ICU but had luckily caught it a little earlier this time so it wasn’t an entire week.
So if you wonder what it’s like being the Mother of a child with diabetes, it has it’s own special place in Hell. It’s a lot of crying, worrying, frustration and yes, survivors guilt as to why her and not me? She’s 45 years old now and I still carry that burden of worry and guilt.
While I couldn’t be more proud of the way she has managed her disease and her advocacy for helping others cope, I still pray for a cure EVERY NIGHT.