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.

Thoughts from a T1D Mom

You ask me if I am okay. And, I am, I really, really am.

But truthfully, I want to yell and cry and say that I am not okay, but I don't have a choice. I have to be "okay" because my daughter has a disease that requires me to be"okay" 24 hours out of every single day.  I do not have a vacation from Type 1 Diabetes. Neither does she. It is in every waking moment, in every single day and especially in every night in the dark...the silent hour in the night when everyone else in my town is asleep.

These are the  things you do not know and maybe your never really cared to know. I didn't know either. I had no clue what Type 1 Diabetes was until it stole the life we had before.

In no particular order...our life with T1D:

*Sometimes I think I have some sort of sleep apnea because I have found myself at times, holding my breath while I sleep, until I gasp for air and wake up...desperately grabbing the transmitter next to my bed that reads her Blood Glucose every 5 minutes while she sleeps.

*My husband and I have had two overnights alone since her diagnosis (October 17th). Two nights alone. It's a lot to watch a T1D overnight especially when they are especially erratic because they are growing, it is hot, they are insulin resistant that day or...someone just farts, no rhyme, no reason.

*T1D has nothing to do with anything that we did or didn't do. It has nothing to do with how we eat, how she eats...in fact, it's just a shitty luck of the draw in an autoimmune disease. We have no family history, and she eats better than probably most adults. It is not anyone's fault.

*I pray for a cure...every single night...because she deserves better.

*She had to grow up overnight in a hospital bed when she was in ICU in Children's. She stresses over "what's a good food to eat" because she knows that too many treats will send her sky rocketing and she will feel tired and lousy...and she just wants to feel good.

*She has had two emergency trips to the hospital. One at diagnosis...the second with the stomach flu. Dealing with the flu with a T1D person is like Russian Roulette.

*She has given her own shots many, many times. She is best at giving herself her shot in her hip or leg. I have a pre-teen and teenager who don't like getting shots at the doctor and my 8 year old receives & may give herself up to 5 shots a day....just to eat...just to live.

*You say, "yay a birthday, a holiday, a treat!"....I cringe and wonder how hard she will sky rocket and then, how hard she will crash...it's just physics...what goes up, must go down....& while your children are running around hyper for hours on end, I'm treating her because she crashed so hard her blood sugar hit 44. Knock on wood, we haven't had to use the glucagon & call 911.  She hasn't been so low she didn't know what was going on, she hasn't had a seizure and she hasn't been unconscious.

*We leave a trail of blood strips wherever we go. In fact, our house is dusted with them no matter how much I clean, sweep and vacuum...you are bound to find a blood strip.

*That being said, in my bedroom, you will also find a sexy mug of used syringes and empty juice boxes by my bed. Sometimes, shit happens & I don't always have enough time to clean that up.  Luckily, it's just the 3 of us...so...it's no skin off our back.

*We are taking Pump classes and waiting for the insurance company to give the okay. Insurance companies are the biggest b****** of all. They just don't want to cover claims especially our families because between a little thing called cancer & T1D, we are an insurance companies nightmare.  They hope we will just roll over and play dead. Luckily, I am a smart, tenacious & stubborn b**** & I will not let them get away with anything.

*She doesn't have a jam-packed schedule of playdates...because that would mean, I would have to spend time with the parent to "teach" them how to care for her while she's over the house. And frankly, I don't feel comfortable putting that on anyone unless I know they really want to do this. She's had 1 play date without me there....with a dear friend who lives down the street while I was home folding laundry.

*The pump is so god-damn complicated...I don't know if I can handle anther medical device. But they say they help with those lows...the ones that can send her into a seizure, unconscious, or the unthinkable.  So, I am game....

*Some nights, I think God has played a cruel joke on our family. First Stage 3 cancer for me, and now this. It seems wrong...so very, very wrong.

*I know this affects my other girls' and I feel so terribly guilty. They need me right now more than ever as they are in the midst of puberty & all that load of garbage that comes with being a girl in middle school. Sometimes T1D steals their time too & that sucks.

And so....I continue to be fine, because I really don't have any choice. I have to be fine for my daughter, and smart, and open to learning all the time about this disease that "is so close to a cure." But still has none.

 While we wait...I sit in the dark of the night, watching her sleep as I hold her transmitter in my hand telling me she is okay right now.

Day 141: ER

It's been 141 days since Roe's type 1 diabetes diagnosis. She's had approximately 850+ shots of insulin to stay alive and probably close to 1,200 finger pricks to this date.

T1D is a daily challenge when everything is going well. The amount of food planning, carb counting and math calculations done on a good day is endless. Then, life throws you a so called "normal" curve ball (like for anyone who has kids). This curve ball is in the form of illness not related to T1D.  And it's the first time being sick since her diagnosis with T1D. This is a whole new ball game, and it  is extremely complicated and scary and not anything like you can imagine...unless you've walked in these shoes.

It feels like being thrown out in the ocean to surf....except you've never had a surf lesson, and it's the middle of hurricane season so the waves are skyscrapers, unpredictable, and you are just trying to prevent yourself from drowning...except your 8 year old's life depends on you, and you have suddenly become the unexperienced expert, learning as you go...

Type 1 diabetics cannot live without insulin.  When they get sick and cannot hold anything down, not only are they at risk for the obvious...severe dehydration...but their body kicks into over drive and can almost immediately start producing ketones...this ultimately will lead to diabetic ketoacidosis, coma and death without medical attention.

Last night when I recognized Roe was on her way to diabetic ketoacidosis, I drove her into the local ER last night with the guidance of one of the doctor's down in Children's where she is under care for the management of her T1D.

With all due respect to any ER docs/nurses etc reading this or anyone in the medical field for that matter, I know you see everything under the sun and have to become "experts" yourself as each case presents itself...but, it is extremely nerve wracking to go in as the T1D Mom expert who does not work in the medical field and have to be able to ask the questions of what they need to do to reverse the dka, stop the vomiting and get her back onto her diabetes management plan because she can't live without her insulin.

It's been 141 days since her diagnosis and last night was her first time being sick...horribly, gut wrenching, non stop vomiting ill....and I had to be the advocate/expert to make sure my local ER knew what the f*** they were doing. We didn't have time to go all the way down to Children's in Boston...she needed attention immediately. And so the surfing began...

I may or may not have initially offended a doc or nurse in there, but so be it. For some reason, I cannot explain...I have been given this beautifully strong little girl who has a chronic disease that HAS NO CURE (insulin is not a cure, it's a crutch to live). I have to advocate and protect her and show her how to advocate and care for her disease.

At the tender young age of 8, she needs to recognize when her body is in trouble. She has to carb count, food pair and even sometimes, give herself her own injections.  She will never be as free as a bird like she was before T1D. She does not get a break.

Nor do I....

So yes, I will roar my mama bear roar...and maybe piss off some ignorant or insensitive people on occasion. I will ask questions of people who are treating her...because they don't know it all. They are just surfing too but with the medical degree.

I am happy to report as I type this up that we are home now. Roe is on meds for a pretty bad infection...but she's on the mend. My heart broke just a little bit more last night, but this time, I hope it doesn't mend because I need the fuel to continue to figure out what I want to do with this life of mine. My heart calls to all the T1D children out there and the parents who haven't really slept in ages either...but I don't know what to do just yet. And so, I'll take this broken heart and hop on that surf board and see where it takes me.....

Day 1

It has been 8 weeks, 1 day and about 4 hours since that ambulance ride down to Boston with my baby hooked up in the back fading into and out of consciousness. Every so often the EMT would adjust her IV and see if he could get her to wake up. I never shed a tear. I just held her hand, put my head down by her side and prayed...like I had never prayed before.

I remember being checked into the ER while my 8 year old daughter was wheeled into a room. I remember being asked the details of what the emergency was...I wasn't sure who the woman was speaking to. "She had the stomach bug & I brought her into her doctor"....my voice trailing off....as the EMT took over to tell her "She has diabetes, her range at admittance was over 700."

I didn't know anything about blood glucose...but I did know you don't get a reading of 700 after a three days of sleeping with some vomiting and sips of gatorade here and there. A flurry of doctors and nurses came in and out and introduced themselves to me, I'm sure many said something meaningful to me...but I was still seeing the doctor in the ER room moments before trying to wake her up to get any kind of response to make sure she had not slid into a diabetic coma.

I heard the words Diabetic Keto-acidosis...I was commended for being a good mother for bringing her into the pediatrician. And I was told we would be here at least a week. I was told she would be like this for a day or two because they had to slowly bring her levels down with the insulin that was going through her IV. But, in a few days, she would start to feel like her normal healthy self....but with type 1 diabetes.

After I texted my parents and my husband and told them that we weren't going anythere, I sat by her side googling DKA. I quickly learned that Type 1 Diabetes is much more serious than I ever thought. I learned it was an autoimmune disease, there was nothing we did or didn't do as parents, there was nothing to stop it. I also learned that this is the rarer and less talked about diabetes. I vaguely remember an ER nurse telling me that Type 1 diabetics, like my daughter cannot live without insulin. She needed it to survive. And that by the end of the week, I would know everything there was to know about how to care for her and manage her diabetes.  I didn't know if I should laugh or cry, this nurse had no idea who she was dealing with. I never shed a tear. I just numbly took it all in and prayed that the universe would give me the strength to lead my daughter to be brave for the next days to come.

That night once we were in our room in the ICE unit, I crawled into bed next to her and just watched her all night....praying with each beep of the IV and with every breath she took.