Wednesday, July 14, 2010

The what ifs, if nots, if so’s and everything in between….

  As a parent we always ponder the what if’s, if not’s , if so’s and everything in between when it comes to our children. Hell most of us do it with everything in life.

This entry has been a long time coming, but was inspired by my twitter buddy Mr. Strange. When it comes to diabetes any type really but let’s talk about type 1 we are told all the risks and complications associated with this disease.  The endos tell us from the beginning   “good control, healthy A1C’s and a healthy lifestyle (I read that as no drugs and alcohol), will lead to a long life with no complications from diabetes.

Well OK! That’s what we will do then. Justice was diagnosed 10/21/08, his first A1C I don’t even want to talk about. But from there after all we saw were 7.6, 7.1, and recently 8.1 twice. Endo was thrilled with those numbers , therefore so were we. We just have to keep up the good work, and teach Justice how to carry that out into adulthood and we will be set! Right?

Well lately I am hearing more and more about diabetics who have/had good control, good numbers and STILL are suffering from complications.  For those who don’t know complications can include but are not limited to Retinopathy, amputation, heart disease, liver failure, and that’s long term. Things can happen now. Ketoacidosis, hypoglycemic seizures, coma, even death.

When I first read those words I felt like a piece of me died, my faith in god (I am sorry please don’t take offense I am just explaining how  I felt at a certain point) was gone. How could a disease so ugly invade my child’s body let alone exist. I guess my point in all this is I am lately feeling consumed by this. I am sad, scared, angry and fearful for every moment of my child’s life. Why? Why did this happen to him? And how can I make sure that he stays healthy and happy. Hence, the blood sugar checks 15+ times a day, including 4 in the middle of the night, and all the other stuff I (and my husband) do. Some have called me obsessive, excessive, and some other not so nice stuff. But what would you do? How would you get through the day knowing his life is depending on what YOU do, and show him how to do.

How do I allow him to be a regular kid and go to a friends house? Nope hasn’t happened. and if up to me wont unless I’m there. How do I dare sleep through the night? Nope wont happen. How do I have time alone with my husband, who I haven’t been alone with away from the kids since dx? I feel I cant, I shouldn’t and wont. Yes I go out, enjoy my time with my friends as does he. But NEVER together, either me or my husband is always with him. I am in fear for every moment, every sugar, every bolus, everything that surrounds him.

The only thing I can do, and do without question is care for him, love him, and make sure I do everything in my power to keep him healthy. I want to show him yes you have a disease but yes you are normal BUT you have to be on top it. You have to stop and check, stop and eat, stop and correct. This is what you MUST do. ..But why?

“Why mommy?” This is the question I get when I explain why I check his sugar in the middle of the night, or take extra care of his feet or when he had to get that annoying eye exam.  I answer.  He responds, “What would happen IF I didn’t?” and the answer to that is what keeps me awake most nights, and wishing I was dreaming most days. 

I am sad. I am scared. I am hopeful. I am honest. I am determined. I am strong. I am in love with a little boy, who has a disease that I would give anything to take away from him. 


Susan said...

Bring out the tissues! Wait a moment as I blow my nose and wipe the tears away....okay. Everything you are feeling is completely normal, BUT please make sure you make J feel like he can, and will, eventually have to take care of himself. I only say this because my parents never let me do anything on my own because they were terrified, which in turn made me terrified, which began a vicious cycle of me being dependent on them until an age that I am too ashamed to admit. They regret it now and I DO NOT want this to happen to you! Independence is EXTREMELY underrated. It usually takes failure to succeed and to become a strong person. My parents wouldn't allow me to fail, so I wasn't "allowed" to sleep over friends houses, go on school trips, give myself injections, GO TO COLLEGE!!!! Let's just say when I turned a certain age I rebelled to a point that I became extremely unhealthy. My parents made me feel, and still do to a certain degree, that I'm a diabetic human, not a human with diabetes. You're doing an AWESOME job and you're constant caring is beyond admirable, but PLEASE remember to take care of yourself as well!

Big hugs,

Alexis-Nicole said...

I am glad to know I am normal, and what I am feeling is not well out of the ordinary. Justice does check his own sugar, treat his lows, and when on MDI gave himself his shots as well. He learning to read the carbs and once we are comfortable with the pump (not even a month yet! eek!) allow him to give himself his bolus and such.

I always let him know that he IS normal but its hard for him to grasp that when he has to constantly STOP to do D things and the other kids dont.

Thank you for post and taking the time read my feelings, which are usually sporadic and out there ;)...

Thank you for being awesome D support!

Scott Strange said...

First of all, great post..

second, don't call me "Mr Strange". People who call me mister are either selling me something or giving me bad news. /wink

But seriously, it is a hard thing to go thru, for anyone and I think you are doing great. Justice is a normal kid, it is just that his particular flavor of normal includes diabetes.

Alexis-Nicole said...

Thanks Scott for commenting I am truly honored you took the time to read MY blog!

I called you Mr. because I have a HUGE amount of respect for you, and all you bring to the DOC.

And thank you for the last part, I needed that. :)

Scott Strange said...

thanks, but I respect you just as much...

Honestly,it is difficult for me to read parent blogs about their CWD's. Mostly because I can now see how awesome my folks were. Again it is a matter of perspective.

We diabetics can't truly see what happens to our folks... but if they don't share with us and let us know that it is ok. that's what parents do, we feel feel guilty about the worry we cause them

I think you guys are going to do very well... and, remember that my opinions, while always humble are always correct

Alexis-Nicole said...

I had to say Scott, I love how you said "my opinions while always humble are always correct" lol!

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