I had met Allison Blass and Kerri Sparling in person while in Chicago for BlogHer09. They had both told me that pumping can make a huge difference in the daily life of a person with diabetes. It lit a fire under me to start looking into the pump.
I think Lorraine was one of the first d-moms I developed a relationship with online.
Shortly after I watched a video of Lorraine’s son Caleb swimming and I began crying.
Crying because a boy could swim?
Crying because of the freedom this little boy, close in age to my own daughter, had because of his insulin pump.
Lorraine is my go-to girl when I have questions about highs and lows and specifically the OmniPod. Yep, she’s been there, done that.
I invite you to read about Lorraine Sisto and her son Caleb and then visit her blog This is Caleb where you will find numerous informative and moving videos. You can also follow her on Twitter; she’s @colcalli.
I’d like you to meet Lorraine of This is Caleb.
Tell me something about your child.
Caleb has an older brother and a younger sister. He enjoys baseball, both playing and rooting for his favorite team, the New York Yankees for which he hopes to pitch one day. He is an ambitious student and enjoys music. He plays the piano, is learning the guitar and recently acquired a drum set.
How old was your child when diagnosed?
Caleb was three. He turned four about a month after diagnosis.
How was your child diagnosed?
Caleb’s most obvious symptoms were frequent urination and thirst – the telltale signs, although we did not know it at the time. I thought he was going through a growth spurt because he kept asking for milk – “icy, icy cold milk”. After a couple of weeks of this, my husband looked up the symptoms online and that was the first time we suspected diabetes. It was a complete shock. We believe it was caught early. We went to Caleb’s pediatrician specifically to test for diabetes. His A1C at diagnosis was 9.8 and blood sugar was below 300.
How has your child’s life changed for the better or worse since diagnosis?
I don’t see any betterment to Caleb’s life as a result of his diagnosis. Yes, I could say that Caleb has more of a sensitivity to people who are different. He may have more of an appreciation for the freedoms he has because he understands what it means have limits. But I believe we could nurture that empathy in other ways. Although we generally do not refer to diabetes negatively, there is no doubt in my mind we would all live a happier life without it.
Caleb endures pokes and injections, wears medical devices, visits the nurse at school multiple times a day, counts carbs and, worst of all, he feels poorly when his blood sugars are out of range despite our diligence and best efforts. Caleb is strong and generally has a positive attitude about diabetes, but it impacts his well-being both physically and emotionally. What he would be like not having been diagnosed almost three years ago, I do not know.
How has your family’s life changed since diagnosis?
We choose to live our lives as we otherwise would. At least I think we do. I can’t be sure because I haven’t lived the last three years without diabetes to know what choices we would have otherwise made. Even so, it impacts everyone in the family. No matter what we do, diabetes has the ability to take priority. We can plan a family excursion to the best of our abilities to keep blood sugars in range, but a high or low blood sugar always has the potential of stopping us in our tracks. We are less carefree. The stress of the daily, nonstop maintenance of good glucose control, no matter how subtle, puts a strain on everyone in the family. Regardless of how well we manage it, there is always that cloud hanging over our heads, ready to rain on us without notice.
How has connecting online helped you cope with diabetes? What online resources do you use?
Infinitely. Being in touch with people who deal with this and knowing they have the same successes and failures makes all the difference in the world. When you are isolated, diabetes can easily eat away at you and defeat you. Being able to bounce issues off of others who have been there and learn from them has been how I have “defeated” diabetes. PWD and caregivers of PWD have been exponentially more helpful than the medical professionals with whom I have dealt. Not because medical professionals lack competence, but because you cannot replace first hand experience and the caring that those who have been there have.
How do you manage diabetes?
OmniPod insulin management system, DexCom Seven Plus continuous glucose monitor, careful carb counting, making healthy food choices without completely restricting food “pleasures” and frequent blood sugar checks including overnight.
What would you tell parents of a newly diagnosed child?
I am contacted often by parents of newly diagnosed children. What I tell each of them varies, dependent upon what their needs and concerns are. Generally, what I tell them is:
1. It’s okay to be upset or angry about your child’s diagnosis and you should give yourself a chance to grieve for your loss,
2. You are not alone and probably the most impactful thing to do is to reach out, whether online or at local support groups, and ask questions and accept the abundant support that is available,
3. Every person with diabetes will experience differences in their management and make different choices – nothing is clear cut and it’s okay to make choices that are right for you even if they don’t seem to be what others are doing, and
4. It will get easier – perhaps not “better” but easier because you will learn. You need to let yourself take the time that is necessary to learn and forgive the mistakes that you, and we all, make.
What do you know now that you wish you had known at diagnosis?
I’m not sure I really “know” anything as it relates to diabetes as it seems the rules are always changing. Perhaps that is it – things will always change and to expect perfection is setting yourself up to fail. Perfection as defined in managing type 1 diabetes is not the same as perfection achieved in most other aspects of life. I have spent countless hours analyzing blood sugars, insulin doses and food content believing that I could achieve a level of perfection that I have come to realize is impossible to attain. The effort was not wasted however. I know those hours of analysis have educated me about Caleb’s diabetes and I am able to give him better care because of it.
Meet other D-Moms and D-Dads each Monday.