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.

4845332472_8eb085e901_bStella 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.

4844714197_ffba9d9e13_zThat 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.

4848560180_c7aaa1b445_bOur 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?

4853938948_0708af175c_b 4853474404_40900673a3_bWe 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 😉

4847800422_3e6a2fd433_bOur 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.

4880742827_a1e100623c_b 4881351000_03fc3c1948_b 4880742925_f2ba71492c_bOne 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.

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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.

4880742983_d56507de19_b(1)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.

4861210799_59ec57f7ce_b 4861210533_b7ebba2f24_b4861830726_e59382fd0d_z 4861210687_5c6731ed23_zWe 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.

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One of our first trips to a restaurant

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the first time we met Major

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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.

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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.

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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.

Superheroes4x6

Team Blackdogsrule

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10 Comments

  1. Amen and AMEN!!! Well said!! Ours 3 year is coming up Sept. 12 (our personal 9-11 we like to call it). It never isn’t a Bitch – as you say – but funny how it does become the point at which you look back and think how far you’ve come and how much tougher your family is than you knew. Happy Diaversary to Stella!!

  2. Oh my goodness Frank. I am just bawling. You will never know how much your family mean to me and Jimmy.

  3. Carmen Martina

    What a beautiful story. It brought back so much to me about my niece Becky…..so I cried. Becky was 3 and found out on her 4th birthday. I was very involved in her life and she too has giving me courage. Becky is now 36 and I still get my courage from her. These are strong people when they grow up and everytime you ask them how they are they will say…..FINE! Enjoy her beautiful life and there is real hope that as Stella grows to be Becky’s age…..I believe there will be a cure. God bless you all and I am so glad you had the courage to quit smoking.

  4. Such a beautiful story I’m reading this thru tears so glad I’m face book friends with you and your beautiful Mom.

  5. Wow! I cried as I read this! looking back and reliving what our family went through! I’m just the grandmother and then back up caregiver for my daughter and son in law. I had NO idea what my daughter, son in law and grandson went through that first few weeks. Although, my son in law took my grandson to Lucille Packard while my husband brought my daughter home with a new born little girl, so she couldn’t go the be with her son until the next day while the rest of us took turns holding the new born all weekend. I could only hold my daughter during those first several hours while we wept. It was such a difficult time that was supposed to be filled with joy and excitement and bonding. Instead it was learning as much as we could so we could support our kids in this strange world of T1D. I took time off work in the mornings so we could get the days started those first weeks with everyone having to drop back into routine. I recall the tears, the screaming and all of that.. and from time to time, it is revisited since we have not had to do injections for the last year. When the insulin is working or one time his inset had come out and his blood sugar skyrocketed-it was scary a few times when he would jerk away with the needle in his arm- he wouldn’t give you any warning that he was going to freak out until the needle was in! He is such a brave little boy, even when he does have to have an injection. There have even been times he asks to do his own blood checks from now on. He is not quite 4 so, not ready for that step yet. He does very good at it though if you let him do the check. It is such an eye opening education -especially if you are blessed with the opportunity to really walk in the shoes of you parents of the T1D. I say blessed because the reality check of knowing that I really DID.NOT.HAVE.A.CLUE! and now I do know what amazing, incredible brave people are that care for their T1D 24 /7/365! Or anyone who has to be responsible for the round the clock care for a loved one! I have such a healthy respect and am in awe of you out there who do this, day in, day out, still work, still have other kids, a social life, other interests! It just is amazing! I used to be in conversations with people about many, many subjects and I would respond, “I totally understand.” I don’t say that any longer. I always now say, I want to say I totally understand, but honestly, I have not walked in your shoes and have no clue. The experience of T1D changed the way I look at others around me in many aspects of life. Colton will be 4 soon and on hid Diaversary (Oct 12) we will all be Walking for A CURE in Pacific Grove, CA My daughter had Pirate Shirts made for everyone walking in his favorite color-RED. There were 30 of us or so – a sea of red. It was so great for my grandson to meet other kids with T1D and see that all of those family and friends supporting and walking with him!!! Thank you for sharing your family’s story! It is inspirational and encouraging to others out here!!! Education makes it all a bit easier!!! Keep it up!!!

  6. Tears of happiness. Sounds so familiar in so many way’s. Xxoo

  7. So beautifully written, I went through all these feelings. Written like only you can Frank….thank you for your voice! 🙂 Happy 4 year diaversary Stella!

  8. This is one of the most amazing stories I’ve ever read. Congratulations to your entire family for overcoming so many hurdles and turning a negative into a positive. You are all an inspiration. I am a supporter of your Mom, Toby, and the work she does is amazing. I think those wonderful, strong, giving genes have made it successfully through the generations…

  9. One of my granddaughters was diagnosed with Type 1 last year when she was 13; like Stella, her numbers were over 800. The ER staff was amazed she wasn’t in a coma yet & she was flown to Children’s Hospital in San Diego. In further testing, it was discovered that she also had a gluten sensitivity and I think she cried more about the food she wouldn’t be able to eat anymore than she did about the diabetes. Now that she’s realized that so much of the food she loved was already gluten free, and there were plenty of substitutes for the ones that weren’t, she’s adjusting to this new lifestyle really well, and so are we. Thank you for sharing your story!

  10. My son was 8 when I realized he had type 1 diabetes. From ICU at Boston City Hospital he was discharged to the Joslin Clinic. Now he is 33 and the father of a 5 year old son. We almost lost him several times to low sugar I am grateful for good training at the Joselin and then a wonderful endocrinologist who kept him going over the years.

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