FUDiabetes

Liam's Story

Hello everyone. What a pleasure to be with you all. My name is Harold and I’m father to six wonderful children and a loving wife of 18 years. Although our family has had many medical struggles through the years, having my two year old son diagnosed with Type 1 Diabetes last February 29th has proven to be our biggest struggle to date.

A little history of my families medical conditions:

Note: Before my OWN direct children, none of what I’ll list below can be attributed to either mine or my wife’s heredity.

When my, now 14 year old son, was one year old, he was furniture walking and doing the whole beginning to be independent thing and then suddenly began stop walking. He began crawling everywhere and refused to stand up. When we took him to the Pediatrician, they told us he just wasn’t feeling well (he had the flu at the time) and he’d walk when he feels like it. Eventually (after a month and what seemed to be endless Dr’s visits) he stopped crawling and would just sit on the floor. We took him in to see our Pediatrician again and, fortunately, our usual doctor wasn’t in the office that day; instead, another doctor was in charge of seeing him. Immediately, she knew something was wrong with him…without even needing to check him out. She told us to take him to Children’s Hospital in D.C., where, later that evening, he was diagnosed with a type of Cancer known as Neuroblastoma. His tumor grew out of his right kidney and metastasized around his spine. The tumor began to squeeze around his spinal cord causing a reduction in blood flow to his lower extremities (which explains why he stopped walking/crawling). Anyway, he was put on Chemo that night as well as a steroid to stop the swelling. The doctors at Children’s told us that; had we came even a week later, the tumor would have ruptured into the blood marrow and he’d his prognosis would not have looked good. Fortunately, with the proper amounts of chemo and final surgery to remove the remaining dead tissue on his right kidney, he’s grown up to be a perfectly healthy young man.

When my, now 10 year old son, was just a month or so old, we noticed he’d never “focus” on us…he’d always appear to look through us and there was never eye contact. He was a very different infant/toddler in that he could not tolerate any loud noises and these would often throw him into screaming fits. It was under a year old where he was diagnosed on the Autism spectrum. He’s high functioning and his main draw-back has been his lack of social skills (which is common in children on the spectrum). He’s brilliant when it comes to math and he’s very uniform and quite a perfectionist (as is common in this disorder.)

Before my diabetic son was diagnosed, autism was my biggest challenge. Learning how to help our autistic son to cope with things that other children find normal was nearly a full time job. Fortunately, his school educators as well we my wife (who is a full-time stay at home mother and does all the hard work when it comes to caring for our children, getting them to our schools and picking them back up, the home, etc), have done an amazing job getting him well adjusted to the world. His communication skills are still sub-par but they are coming up to speed every day.

…and that brings me to our biggest challenge to date.

Last February, our 1 year old son was acting very lethargic all the time, ALWAYS thirsty, and his diapers were literally drenched in just an hour or two. We took him to the doctor and once again, they weren’t able to diagnose anything other than he’s feeling ill…and he’s slightly dehydrated (which we couldn’t understand because all he was doing was drinking water!). So we put him on electrolytes. This was a Friday. The doctor told us to bring him back on Monday if he wasn’t feeling well. On that Sunday we woke up and found his legs and feet had swollen for some reason. We couldn’t wait until Monday so we took him to Children’s Hospital where he was, later that day, diagnosed with Type 1 Diabetes. We stayed in the hospital for some days until they dialed in the right amount of insulin for him.

This disease has changed my families lives…1000%. Even with CGM and Pump I still don’t sleep easy thinking about how “up hill” of a battle this is going to be for him. When I think about how he’ll be discriminated against, made fun of, bullied, his devices and/or medicines possibly stolen, his lifetime worth of struggles that he’s yet to even begin facing…it just breaks my heart. As his father, I want to take this from him so badly. I would gladly give my life to make him healthy again…but that’s not meant to be…unfortunately, it doesn’t work like that.

So; instead of wallowing in my sadness (which I do on occasion), I have tried to just become as educated as possible so that we (my wife and I) can teach him how to deal with this disease and not allow it to define who he is. Diabetes is a part of who he is, but it is NOT WHO he is…he can be, and do, anything he wants with his life and my goal is to help him grow up into the kind of strong man that I’ve worked at making sure my other children are growing into.

I won’t pretend that it’s easy because it isn’t…it’s every day, 24 hours a day. It’s sleeping with one eye open all the time. It’s making sure my ears are cleaned out so that I hear alarms. It’s the ever moving target that is his age which makes dosages a very difficult thing to perfect. It’s a total 180 degree turn from how life was before diabetes. And it’s not easy…and it’s not fun.

…but life isn’t always fair. My 8 year old threw out a little ditty that he learned in school a year or so back and I use that often these days when describing how I feel and how I will react…

“You get what you get and you don’t throw a fit.”

Harold (Liam’s Dad)

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We have some things in common, although autism is still by light years my families largest challenge. Glad to hear your 10 year old is adapting. I am still clinging to the hope that my 5 year old will ever communicate in any meaningful fashion…

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Mine was 7 before ever saying a word. He would only scream and cry as his form of communication. Lots of great educators and a mother that’s tireless with him, though, and he’s now communicating much better. There is always hope!

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That’s awesome… I’m buying the school district Milo the interactive robot to help out…

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These stories break my heart. This is the thing that upsets me the most about the disease, when kids and little tykes have to deal with it.

There is nothing I can do to remove these fears and make you feel better about it. But I can tell you, these things will drive him and motivate him beyond what he would otherwise be capable of. He will be tougher than his peers. Better able to handle things.

A man’s will is not destroyed by fire, it is forged by it.

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That, and he’ll know Brazilian Jiu Jitsu and Muay Thai like his papa so he’ll just knock out, or choke out anyone that attempts to bully him. Preparation is my cure for the bullying thing for all my children.

I do worry about how his BG’s (and his equipment) will work with the training, though…that’s going to be fun (not)

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i am not saying that this happens to all autistic children, b/c i know that it does not; but, i would like to spread some hope if there is room for it…which i believe that there always is:

my youngest sister is autistic and has ash burgers; she did not speak until she was about 6yrs old. she would just spit and kind of jerk around. wouldn’t let anyone touch her. screamed and punched. very very different than her two other big sisters. we were terrified what puberty would bring. it was frightening to say the least. and heartbreaking.

but instead of putting her into a specialized school environment, my parents decided to mainstream her. she was very slow and behind her grade level, but she wasn’t stupid at all. that much was clear. she just had absolutely no social skills.

many patient years later, with the help of many different types of educators, my sister now has a Masters degree in Childrens Education. she works specifically with learning disabled and physically disabled children. teaching is her gift. and, she has a very generous heart. she is still socially awkward. doesn’t talk much. but she is a wizard with children, and not many paople can say that. i am very proud of her.

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