Why I don't sleep

Sometimes you are just too tired and burned out to even ask for help. You feel like you are being weighed down by huge boulders tied at your ankles. You are hanging on for dear life to the mainland where the land of the rested and free exist.

You...you are bobbing up and down hanging on to that thin rope that connects you to the mainland.

Some days it is a real struggle to keep your head above the water, & you feel those grips around your legs...pulling you down. You fight. You gasp. You just need air. And, you continue to hold on for dear life because she needs you to. Her life depends on it. You wonder when is the last time you have slept through the night....you know the answer to that.....

1 year, 3 months, 1 day and 13 hours.

It might actually be a little more but this is based on that ambulance ride. The day her life changed forever. The day you stopped sleeping.

I always knew I would make a good mother. I have always been good with children. I've been a teacher, a coach, camp counselor, nanny, & babysitter throughout my life starting at 13. Becoming a mother was the most beautiful and the most terrifying experience. I'll never forget with my 1st child, waking up every hour that first night when we came home from the hospital with this tiny newborn baby. She was such a good sleeper, & it terrified me. I'd rustle her a bit to hear that deep newborn breath. Then, I would feel relief, turn over and go back to bed until the next feeding.

I became a mother of 3. Once I graduated from being a mother of babies, I thought it would get easier. And it did...for about 6 years.

And then, she started to get sick. But I didn't know what was wrong. I thought she looked thin because she had grown a lot. I thought she was tired from too much fun in the sun. I thought she was cranky because she is the baby of the family and is always "playing up" to the schedule of her sisters who are 3 and 4 years older than her.

But, I did notice she had lost a twinkle in her eye, and I couldn't explain why. I'm not a doctor or a nurse. I didn't know the signs.

And then, she got really sick....DKA sick....close to being in a coma. Her body was failing her.

I never knew I would learn more about a disease than those much "smarter" than myself.  I don't have a medical degree but I know more than most nurses and doctors who probably skimmed the material of  this disease in a chapter in the textbook.

I don't have a medical degree but I am her pancreas, and some days...it is just exhausting. But I do it, and I do it well.

 I miss the days when I thought having a sick kid was a big deal because I might miss my workout, miss a day of work and miss a few hours of sleep.

I don't sleep now.

I remember after she was diagnosed, people asked me if I was nervous to send her to school. No. I am not. I am relieved actually because though anything could go wrong in the blink of an eye with t1d she's surrounded by people. She is awake.

I am terrified of the night time now because she is asleep.

I never was a night owl. Now I prowl through night. Treating highs, treating lows...changing failed pumps...listening for heavy breathing. I check the CGM all night making sure the technology hasn't failed us...or that an alert has been missed, and she's traveling down the path of sleep where she doesn't wake up.

When everything is smooth, and her blood glucose #s are where they should be all night, I jump up gasping for air...frantic that I may have missed an alarm, and the silence means something bad has happened and it is too late.

I make sure each and every night that my sweet girl will wake up.

I hang on desperately to that thin rope but I seem to be drifting further and further away. I am strong, and I won't let go, but I am tired.

I don't sleep.

I hang on and pray that a cure will be found.

I pray that someday she will be able to sleep without needles in night when she's too high or straws being shoved into her mouth when she's low.

Being too high is like a long drawn out death and being too low is dying in an instant. I cannot fail her.

I am tired but not too tired to pray that one day I won't be terrified when she closes her eyes. That maybe one day in her lifetime and mine, they will have found a cure.

I hang on a little tighter, forcing my head to stay above water. I close my eyes and wait for morning to come.