July 30th, 2010. A day I will never forget. It was a Friday, and I was preparing for a week of vacation to spend time with the family before they had to go back to school. Yes, 7/30/10 was the start of my vacation. I no sooner turned on my out of office notification when my wife told me we had to get Stella to the hospital.
Stella hadn’t been feeling well for awhile. An unquenchable thirst, so ferocious that she would be in fear if we ran out of water in the car on the way to the grocery store. And with that thirst, a never ending series of bathroom visits, stopping at gas stations and restaurants and where ever else. Headaches, a general listlessness, and a huge fight between Stella and I over some words on a label that I was sure she could read, and she refused to read. (Turns out her blood sugar had affected her vision, and she was too scared to tell her mom and dad she thought she was going blind. Not my finest parenting moment) My wife had been tuned into what was going on, may have even mentioned to me once or twice that she knew what was going on. She had an inkling very early on, having lived with her grandfather, a type 1, at the end of his life. She knew before anyone else. Our daughter had type 1 diabetes.
That Friday night was spent in the ER. Our worst fears were confirmed with a blood sugar of almost 800. We were lucky. Due to my wife’s pro-activeness, we caught it early, before any complications of ketoacidosis. Our local hospital didn’t have a pediatric Endocrinologist on staff on the weekends, so they whisked her away by ambulance to Kaiser Sunset we we spent the next 4 days, taking a crash course on how to care for our daughter, trying to learn and retain as much as possible so that we wouldn’t kill her.
To say this was a rough patch would be an understatement. This was a whirlwind of screaming and crying, needles, new math, nutrition overload, a new way of living. This disease infiltrates its way into every aspect of life. It seems that every decision we make has some thought given to how diabetes will affect it.
Our experience in the hospital was horrendous. The staff was absolutely amazing. And Dr May (the Endo on staff that weekend) was probably one of the most amazing Dr’s I have ever met. He talked us down off the ledge, let us know that our daughter was going to be able to live a long, healthy life, and generally put us at ease. But when ever it came time for injections, all hell broke loose. Screaming, flailing limbs, crying, hiding under things, our daughter was so frightened that it required 2 orderlies to restrain her while my wife or I gave her an injection. And we had to do this multiple times a day. If we had this kind of trouble in the hospital, how ever would we do this by ourselves at home?
We had instructions given to us by Dr’s, nurses, nutritionists, CDE’s. Honestly, I couldn’t tell you anything that I was taught while there. It was the most stressful 4 days of my life. The only time I recall seeing my daughter happy was when we had a visit from a Therapy dog that made rounds through the pediatric ward. That dog obviously left a lasting impression on us 😉
Our world became needles and insulin. Numbers, corrections, carbs, ISF, C:I ratios, long acting, fast acting, what happens if we accidentally give her the wrong one, nightmare of realizing that this was some kind of karmic payback for thinking I didn’t need math in school.
One of the scariest things that I have ever heard in my life (second only to your daughter has diabetes) was “you are released from the hospital, you can go home”. I left there realizing that in all honesty? I didn’t know shit about what we were doing or how to care for our daughter. How could they possibly let us leave? How could the be sure we wouldn’t accidentally kill her? we were tired, exhausted, staring at little tiny numbers on little tiny syringes, dealing with little tiny bottles of insulin that had radically different responses to her blood sugar. And all the screaming and crying and flailing and yelling.
As we left the hospital, Stella started crying. She pulled her mom aside and talked with her. I assumed she was scared and let them have their moment. Later, my wife shared with me that she wasn’t scared for herself, she was afraid that I would wind up back in the hospital. I had a heart attack a couple of years before that, from years of smoking. And at that point I still hadn’t quit yet. But I found that exchange to be very powerful and motivating. When by all rights she should be in fear of her own life, she was worried about me.
We got home on Monday night. On our own. And for the very first time in our lives, feeling extremely alone, isolated, scared, stressed. Even family and friends that offered help had no idea. As those of you that have type 1 or a child with know, there is very little understanding in this world of what type 1 is, let alone how serious it is.
We spent Monday night and all day Tuesday dragging my daughter out from under her bed, her desk, the kitchen table, anywhere she could hide to give her insulin. It would require my wife to sit on her legs while I sat on her chest, holding down her arms while she screamed and cried. It broke my heart. And again, let me remind you, we were supposed to be on vacation.
Prior to all of this, one of the things we were going to do was take a trip to Raging Waters, a local waterpark. It was going to be our first time there, kind of the highlight of the week for Stella. At one point on Tuesday, as she had tears streaming down her face, she looked at me and asked if all this meant that we wouldn’t be able to go.
I looked at her and said, in all honesty, that there was no way we would be able to go if she wasn’t capable of taking her injections without screaming and hiding. I couldn’t chase her around an amusement park with a needle in my hand, I would be arrested. My wife thought I was crazy for even bringing up the possibility of going. How would I ever deal with her blood sugar? Food or carbs? Keeping her insulin cool? There was so much we didn’t know!
Up until this point in her life, my daughter was a lot like me. When things got tough, she was very quick to give up. Hard level on a video game? Just cry and quit. Learning to ride a bike? Well, she was going to be the oldest kid on the block with training wheels. New foods? Ewww. The list was long. She learned it from me. That was always my MO.
But the power of Raging Waters was much stronger than I ever gave her credit for. And on Wednesday, her whole personality changed. A switch was thrown. She became a new person. She became my hero, the person I look up to more than anyone else in this world. She sat down in a chair for every injection. She didn’t scream. Yes, there were still tears. But no flailing. No screaming. Just pure courageousness and bravery. And there was no way I was going to deny that little girl a trip to Raging Waters.
I called up my best friend Tommy who has a son my daughters age and asked if he would tag along, and help me wrangle her if needed. I knew he wouldn’t mind. We all packed our lunches so we didn’t have to deal with the unknowns of the food court, and we made a plan to eat at the car. And on Thursday, just 2 days home from the hospital, we went to Raging Waters. I will forever be grateful to that park for giving my family our life back. I wasn’t sure how it was going to go prior to that. I really thought that life would never be the same, and while technically that was true at the time, aside from diabetes, the changes that have been made have been overwhelmingly positive. From a new found persistence from my daughter, a willingness to try anything, see things through to the end, attempt new things, the list is tremendous. And thank you to Tommy and Aiden. I will forever be indebted to you for coming through for us at that time, and letting Stella know she was loved and cared for, and no different than anyone else, and that she could still have fun.
We have gone back to Raging Waters every year since, as a celebration of her diaversary. This year, she will celebrate while away at camp, but we will be going back on 8/7. Once again, I took a week off to spend with the family. And a huge outting for us will once again be that trip.
I can’t begin to tell you all the amazing things that have happened to us since her diagnosis. My daughter is growing up into a beautiful young woman. Powerful. Smart. Not an ounce of whoa is me in there to be found. She is proud of who she is. She isn’t ashamed of her diagnosis, her pump, the things that plug into her body. I have learned more from that little girl over these last 4 years than I ever did the previous 40.
Where my life is concerned, there is no quitting smoking without her showing me how not to be scared, without her small exchange with her mom that day leaving the hospital.. There is no running. No finishing a 10K, a 1/2 marathon, or a damned full marathon without her showing me how to be brave. How to learn that there is no quit. How to ring the cowbell. I owe so much to her. And she continues to inspire me. Her no fear attitude is infectious. It has spilled over into my life in ways I never thought possible. So while 7/30/10 is most definitely my daughters diaversary, I can’t ever help but feel that it is mine too.
You are at camp this week Stella, but know that I love you, I miss you, I know you are having the best time in the world, I am proud of you, and I owe you my life. I think you are pretty fucking amazing. And I will for the rest of my life be your biggest advocate. There will never be a moment that I didn’t wish you had a cure, that you never got this in the first place.
And at the same time, I am sometimes scared to think of where we would be if that never happened….
4 years ago our lives changed forever. Most people would assume they changed for the worse. I would argue that.
Happy 4 year diaversary. You (and our whole family) have come a long way. Here is to 100 more.