I try not to be negative but can I just say that I abhor diabetes.
My feelings towards diabetes goes far beyond that of hatred. Hatred would be too kind.
This morning, his sugars were 46. Yeah. 46. I had to lower his basal rate last night to keep him high enough so he wouldn’t drop and he still dropped. And so of course he was laying on the floor crying and daddy couldn’t get it right. Daddy just doesn’t have the patience to deal with the lows. He tries, really he does. But it doesn’t come naturally to him and he really struggles.
Then this afternoon, we were having fun, playing, and he started throwing a fit. Turned out he was low again. 49. So he was bawling and we had to push juice on him.
Then there is the constant monitoring of T. The looks we get at restaurants as I chase down my 2 year olds to take their sugars. On top of the looks we get for HAVING two 2 year olds. The comments about how mean it is to prick his finger.
And then there was last night. We have to do site changes every 3 days. We have set up a pattern of doing them every Tuesday, Thursday, and Saturday nights. Those nights we give him a bath and then do a site change.
Site changes are hard. Basically we have to rip a big piece of tape off his skin, pull out a plastic tubing and then insert a new one with a giant needle, put a new piece of tape on top, plus the pump back in and hope that it is working properly.
While I have gotten pretty fast at this process and it is far better than the process of giving him shots ten times a day, it is still a traumatic experience each time for him and for me.
Last night he kept crying when we were getting ready to do the site change. And for the first time in the 8 months we have been doing this he says “Don’t hurt me mama!” with tears in his eyes and in his voice.
Let me just say that my heart broke in two once again as I had to force him to turn over so that I could push that tiny little needle into his butt. Of course I praised him for being a big, strong, brave little boy. Of course I kissed and hugged him and told him I was proud of him. And he got his candy (he gets a small piece of candy on site change nights which is something he rarely ever gets). And he did move on from it fairly quickly. He bounces back well.
But my heart is still breaking.
Not a day goes by that I don’t think about diabetes. Not an hour goes past where I don’t wonder what his sugars are, or whether T is going to get it or if G will eventually have issues as well. Not a tantrum happens in our house where I don’t pull out the meter and check the sugars of the child throwing the tantrum. And its hard. And its exhausting.
Aaron has been discovering how exhausting lately. He has been doing middle of the night checks. And I think for once he is seeing what a drain it can be to have to get up in the middle of the night and sit with him till his sugars rise. To pray that the sugars are good so that you can crawl right back into bed. For us these middle of the night checks are essential. He is not stable and cannot go all night without some supervision.
I admit that there is a part of me that is fearful for his future. For a future in which I am going to have to trust him to care for himself. It is necessary and important for him to do so. But diabetes is a scary disease. And I worry that he will be careless or that he will be unaware and that I will lose my precious baby.
And I worry that I will lose one of my other little ones to the awful disease. That I will have to rush T into the ER, not for low blood sugars but for high ones. That I will have to put G into the hospital and watch him be hooked up to machines, poked and prodded just like his brothers. It breaks my heart.
But in all of this, I am grateful.
I have three beautiful little boys. I have a wonderful husband who struggles at times but works hard to care and provide for us. We have medical advances that allow my little one to live a relatively normal life. And I did not lose S to DKA, even though I easily could have.
I’m reading a book called “God Built” and it is all about the struggles we face in life. I resonated with this passage tonight when I was reading, and thought that I would share.
“A the moment you may not see the good. All you may see is the hurt, pain, and wrenching grief of your loss. But the Lord is good and does good. At the moment it may not seem good to us as we hyper-focus on our personal loss. But in the purposes of God, in His way and in His time, and because He is in control of all things, He will bring you to a point of seeing the good.” (page 39)
He goes on to say that we may not see the good in our lifetimes. It might not be until we reach Heaven that we are able to see how God used our suffering for good. But we need to trust that God IS working for the good of those who love Him as He has promised in His Word. (Romans 8:28)
So tonight, I am clinging to that. I am holding on for dear life that God has a purpose in this horrible disease. That He is going to work in and through it to make a difference in the world, in our lives, in some manner. I know I may not see it. I know that it may not come to pass in my lifetime. But I am trusting in Him.
So tonight, although I am frustrated with diabetes, although I am worried about my children, I will choose to go to bed trusting in the promises God has for us and trusting that He is working some good out in the midst of our struggles. And I will be grateful for the wonderful blessings that He has provided.