Like it or not, I am the mother of a special needs child. I hate using that term because all children have special needs...but that is the term given. My mom and I were just talking about how we forget that Suzannah is not a perfectly healthy child sometimes. When I hear about something going wrong with someone else's child I am in awe of how it is possible that I can have five perfectly healthy children. That thought is short lived as the reality of her life threatening disease re enters my mind. There are so many things worse which is why I hate to complain about it, but most days are hard and some days are terrible. I have shared how diabetes is like my sixth child in that I am always having to think about it and take care of it. I separate it from Suzannah. I guess that's why I think of her as blessed with such good health? And I do NOT think of her as a "diabetic!!" In fact, it takes me aback sometimes when people refer to her as one.
A special needs child is defined as one that has:
"a physical or mental impairment that substantially limits one or more of the major life activities such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."
Truly, when her sugar gets low she has 7 of these 9 physical or mental limits. I am not exaggerating! It is a terrifying thing to witness and the fact that once they begin to lose their ability to see, speak, walk, etc means they are a breath away from a diabetic coma is petrifying. But it's not just the lows that effect her. Almost every moment of every day she is effected by her blood sugar. When she is high she can't focus or think. Her attitude is altered, she is prone to fear and anger. She feels anxious and frustrated. She is on the edge. It is a constant effort to try to keep her sugar not high...and not low. Before anything she wants to do, the effect it will have on her sugar must be taken into account. Physical activity, last time she ate, WHAT she ate, when she will be eating next, WHAT she will be eating next, what her last blood sugar was, last time she got a bolus, how will this affect her emotionally (i.e. nervous, fearful, excited, etc), even how hot it will be is taken into account. So many variables all day every day must be taken into account. It is exhausting. Some day it will all be 100% her burden to bear....but our hope is that it won't have to be.
Our hope is that there will be a cure. We need every one's help to raise money to fund research!!!!! They are making so much progress! There are so many advances in the technology that are helping make the long term side effects of diabetes not necessarily inevitable! It used to be that it was just a matter of time before you would lose your vision or a limb, or need a kidney transplant. Suzannah's doctor says that doesn't necessarily have to be a part of her future! And if there is a cure it can be a guarantee! So please consider donating to the JDRF by clicking on the link in the upper right hand corner of my blog. It could be worse. We really are so very blessed. But it could be better. There could be a cure! Please help if you can.