Yesterday was not one of my better days. J and I had to go to the JDEC - The Juvenile Diabetes Education Centre at the hospital. J is my 11 year old and she was diagnosed with JD when she was only 3. It has been something that she, and the whole family, has struggled with ever since.
It seems that no matter what we do, her blood sugar, or blood glucose levels, are sky high or way too low. For years, J suffered from low blood sugars and seizures. Now, they're way too high. We have tried different types of insulin, changed her schedule, changed her diet, nothing seems to make a diference.
I have to tell you about my baby. She is one of the most content, even tempered kids that I have ever met. Truthfully. Her 1st word was HAPPY. When she was little, she would ask if she could go to bed, instead of asking to stay up. She has never complained about this horrible disease, not once.
It breaks my heart to see her suffer like this. I worry endlessly about the complications of this
monstrous thing that has taken over her life.
When we went to see her Dr. in March, J was slim, but healthy. She was 89.5 pounds, and 5'1. Yesterday, she had grown an inch, and dropped to 78 pounds. She should weigh about 92, 95 by now. I was shocked. I knew that she had lost some weight, but I was unprepared for something so dramatic.
We are now faced with finding a way for J to put on weight and do it in a wasy that will be healthy for a diabetic. For everything that she eats, she needs insulin, and finding the right balance has always been difficult. Now, it seems nearly impossible. We have one month, to bulk her up, or the Dr. will have to put her back in the hospital. Anymore weight loss, and she is back in the hospital.
As her Mom, I feel responsible. I feel like my defective genes cursed her with this life altering
nightmare. I feel like I should be able to control it, to make it go away or at least make it something that we can deal with. How? How do you fight something like this? I don't think that I can stand the thought of J in the hospital again, hooked up to an IV, pale and sad. I hate it.
You know what the worst part is? She won't complain. She never does.
I would take this away from her in a nano second, the blink of an eye, and take it upon myself. If I could. If only I could..........
15 comments:
Oh Biddie! I have cousins with JD and my father has Type II. I know it is rough and know enough to know I will never relate to what it is like to watch your child go through this. What I do know, however, is this is not your fault. Guilt, especially in this siutation, is not a healthy emotion. You wouldn't have chosen this for J. You didn't choose this for her.
You are obviously doing everything you can for her - continue that. I am certain it will work out.
It has to.. I just hate seeing her this way. Nobody deserves this, but she is such a nice little kid, truthfully, she is. Makes me crazy to think of her suffering in any way.
Be strong. Of course, you would take it all away, if you could(and she probably knows this), but all you can do is explore every avenue that can help her lead an extraordinary life...just like any parent must do with any child, right?
I have seen people with the pumps that are attached... can she have something like that? It will give her insulin after she eats -- she just monitors it and then pushes a button (I think that is how it works).
My dad and aunt have diabetes - my aunt since she was pregnant about 40+ years ago. She is having issues now as well, but will get through it.
Please don't feel guilty! It is not your fault. You are doing everything in your power and that is what you have to do. She is obviously a much loved child and knows you are doing your best.
Good luck and keep us posted!
marni- she will be getting the pump, the Province is starting a program to pay for them. We are trying to wait until then. It seems to be the only option for her. The hard part is the waiting...
dilling- I'm not strong,but J sure is. I'm trying,tho....
be strong and have faith and dont feel guilty, have a brother and a sister with diabetes they both doing well, hope she puts on the weight x
putting on the weight is the big problem right now.. she is so skinny, and how do you gain the weight and stay healthy?
You know that I'm praying for you and for that sweet child and the whole family. You know I'm here when you need me.
And look at this, a whole bunch of people you haven't actually met yet are caring for you too.
Give her a hug for me.
Have you looked into childrens hospitals? Some will fund treatments such as getting the insulin pump..
I'm working at a scientific publishing company and we're researching launching a new journal highlighting the development of devices such as insulin pumps. If I come across anything at all that looks helpfull I'll be sure to pass it along...
ldbug- thank you! The Province(Ontario)promised to start funding insulin pumps. We're waiting to hear more. They run about $6000.00 here,and I have no idea how much the insulin will cost. I don't know how we'll cover the costs, but it has to be done. I don't care,I'll do anything to make this happen.
I'd love any info that you can share, this is so new to me. J has been on the pen for years now. So nice to know that so many people care..
heidi - there you are! I was wondering were you had gone! I know how much you love us. You're one of the few people that took the time to learn a little bit about diabetes and isn't afraid to have her spend the nite...It sucks, you know? Too may people are afraid of what they don't understand...
Do you realize that not even Posh or Lynn-bitch, or either one of my Moms have taken the time to learn. It needs a lot to me..
Don't feel guilty. You are doing the best that you can.
Thanx for the words of encouragement.. I just wish that I could do more. It's so unfair.It's mom guilt,you know? Always there,never goes away...
Biddie, I was afraid at first but I love that kid and I wanted her to stay with us for a few days. It was worth it!
Having two grandpas with diabetes at least gave me some knowledge.
We'll have her here again whenever we can. xo
One of the many reasons that I love you so.
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