Wednesday, September 15, 2010

Invisible Illness Week Guest Post: A Mother's Perspective

I am happy to introduce to you Amy, author of the blog, My Diary as the Mom of a Diabetic Princess. Amy lives in Fairbanks, Alaska with her husband Jeff and 4 kiddos plus a dog and a cat. She loves the endless summer nights and even the coldest, darkest days (and there are LOTS of them) of Interior Alaska.

Jeff and Amy's Daughter, Jada

Jada was diagnosed on March 23, 2008 at the age of 2 with Type 1 Diabetes. It was Easter Sunday....one I'll never forget. I spent that day rushing her to the ER, then riding in ambulance and then the next 24 hours in the PICU at Texas Children's Hospital in Houston. Our lives changed forever that day and the education I received over those next 3 days in the hospital still dominates our lives.

Type 1 Diabetes is an autoimmune disease that occurs when the pancreas stops making insulin, which is a hormone needed to allow sugar (glucose) to enter cells and be used to produce energy. Various factors can contribute to the onset of this chronic disease including genetics, viruses, and environmental factors. Diabetics are more at risk for heart disease, blindness, neuropathy and their weakened immune systems make them an easy target for illness. It's not easy being diabetic. The treatment for this disease is insulin injections...whether it be through syringes, insulin pens, or an insulin pump The big side effect of insulin is low blood sugar, which if not treated, will lead to a seizure, a coma or possibly death.

Diabetes doesn't sleep, so neither do I! :) Because of the potential dangers, Jada is monitored around the clock. We check her blood sugar anywhere from 8-12 times a day, including at least 2 in the middle of the night. If we find her blood sugar is low or heading that way, we wake her up to feed her. During the day, it's constant monitoring of the carbohydrates that she consumes, her blood sugar numbers and also her behavior so that I can catch a low before it gets too bad. It doesn't stop. It's always there...even when I'm not with her, it's always in the back of my mind. I lay awake at night wondering if I should check her one more time. Jeff and I haven't had a weekend away from the kids since her diagnosis. Who do I trust to keep my child alive???

Diabetes is my battle now, but someday, it will be hers. Last spring, I wrote the following blog about how this disease sets her apart from others and how it's my job now to prepare her for living this life on her own.


All Alonely
Does anyone see her sitting there?
All alonely?
So small. So big.
Meter in her hand
God...was this really your plan?
I know that she already feels all "alonely"...
Different than the rest...
Really, though, she's better than the best....
Jesus, give her Your Grace...
To face what she has to face.....
I can't take that "alonely" away....
I trust that You will meet her there...
God...I put her in Your care....
Letting go continually...
Help me show her, You are all she needs.

On Friday, Jada and I went to Sam's Club and did some shopping. It was lunch time and we decided to have some pizza. I ordered, then had Jada pick out a place to sit and had her check her blood sugar. She chose a table in the middle of the cafe area....tons of people on each side of her, but no one in that very middle row. I turned around to look at her, and she seemed so small. So very out of place all by herself. And then she pulled out her meter and checked out her blood sugar. She suddenly seemed so BIG...so old. So mature. And still so very alone in that room full of people. Alonely...by the way, is how Jada refers to doing something alone or being alone.

One of the things I hate most about this disease is how it sets our children apart from others and how that makes them feel. Right now, I can help to protect her and sometimes control things so that she doesn't notice it so much. As she gets older and becomes more independent, I won't always be there. Then, eventually, she will really be on her own and I might get the weekly phone call. I *hope* that I am doing all that I can to help her feel confident in herself...to prepare her for a life of facing this disease by herself. I know the stress and pressure I feel...how will it be for her? This is something I think about ALL THE TIME.

This is what I do know. In my "aloneliest" times, Jesus has met me there. Right where I was....angry, confused, dejected and feeling very "alonely" in a world that kept on buzzing by. My sweetest times with God have been when I was so down that I didn't know which way was up. He was there....at the bottom of the pit with me. I don't know what the road for Jada looks like...I know there could very well be some pitfalls ahead for her and that at times, she may well could.......feel very alone. And I cringe....because I. DON'T. WANT. THAT. But, this is her disease and one day, it will be hers to fight on her own. I know how much grace I need to get through my day...what about her? My prayer for Jada....and all our kids....is to know that Jesus is there....and that He will meet them right where they are.

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