It was 4:30 in the morning. I heard a voice coming from the other room.
“Daddy?”
I nudged Michael to wake him and told him Riley had just called him. He immediately got up and went to see what he wanted.
Upon entering his room, Michael hears, “Daddy, will you check my sugar?” When Michael told me this, I sat up in bed. This can’t be good.
A few seconds later, I heard the Freestyle Flash beep and Michael called out, “It’s 55.”
Michael went to get some fruit snacks and some peanut butter crackers. Before, I could move I heard Riley’s voice again.
“Mommy, will you come hold me?”
I got up and sat on the foot of his bed and he crawled into my lap. About that time Michael came in with the snacks.
He sat there and slowly chewed the fruit snacks and then 2 peanut butter crackers. I noticed he was shaking. When he was done eating, I held him like a baby and wrapped the blanket around him. He lay there shivering with his eyes closed. I began to rock him back and forth.
I looked up and caught a glimpse of us in his TV. Me sitting there rocking back and forth with my sweet boy in my arms waiting for the sugar to take hold and start to work.
And, the sadness I’ve been keeping at bay for the last couple of months reached up and slapped me in the face.
I just stared at the two of us and wondered how in the world we got to this point and if it would ever end. Really, one of my first thoughts was, “Is there really ever going to be a cure?”
Riley’s sugar went up to an acceptable number and I lay back down in bed. But, it was a while before I was able to sleep again.
And, all day today, the image of us in the TV keeps popping in my head. My emotions have been a mixture of sadness and anger.
I’ve been so busy the last couple of months. Today I realized that it hasn’t been by accident. When I’m busy, when there’s always something going on, I don’t have time to dwell on his diabetes.
Don’t get me wrong; it gets plenty of my attention. But, I don’t dwell on it. I test, correct, and treat lows now without really batting an eye. Then, I move on to whatever task is at hand.
Today I realized what’s really going on. And, it’s one reason I was having trouble writing any posts.
I can be a little stubborn. OK, that’s not entirely true…I think Michael actually compared me to a bull one time (or 20, but who’s counting?). It’s one trait that Riley got from me. God help him.
Over the last couple of months if diabetes started to get to me, I’d push it aside. I didn’t want to think about it. I didn’t want to bring up all those emotions. Like I said, I did what had to be done, but I didn’t think about the emotions that come along with it.
I’m stubborn enough that if a bad thought started to enter my mind, I’d run it off.
I think that’s why I haven’t written a true diabetes post in a while. I didn’t want to dredge up all that emotion. I didn’t want to deal with it.
There was the time, when his sugar was 34 and after I gave him a whole pack of fruit snacks, he kept crying and begging for more. I’ll never forget that look on his face, the look of helplessness he had. He just kept pleading with me to give him some more. But, I knew if I did that what the end result would be. I knew he felt horrible. I knew the fruit snacks would begin to work, but Riley didn’t. He looked scared. He was looking to me for help, and all I could do was try to assure him he’d feel better in a few minutes.
At the time, I pushed it aside. He lay on the bed and I stroked his hair until he felt better. But, I never really felt the situation. I just lived through it.
Or there’s the time a few days ago when I changed his needle and when I gave him his bolus, he began to cry. With tears streaming down his face he said, “My needle burns.” I hugged him until he felt better. But, once again, I didn’t give it much thought.
Or there’s the times when he mentions a cure. Or when his eyes light up when another boy with D walks in the room. Or the times when he’s in the 300s and he’s hungry and upset.
I push my emotions aside because I have to. I tell him he can’t have any more fruit snacks, because I have to. When his needle burns I pat him on the back and tell him everything will be OK in a little while because I have to. I tell him that I hope one day there will be a cure because I have to. I pretend not to notice that he loves to be around other people with D because I have to.
Every once in a while, I have a day like this because I have to.
I had to pull off on the side of the road today. The tears in my eyes were making it hard for me to see where I was going. All the emotions I had kept inside came pouring out.
The unfairness of it all; the heartbreak I have for my child. The anger I have that this disease decided to take up residence in his body and the fact that there’s not a damn thing I can do about it.
But, I know that tomorrow, I'll go back to the way things were. I'll test his sugar, I'll count carbs, and I'll bolus, all without giving it a second thought.
Because I have to. I just have to.
21 comments:
Hi Penny,
You're obviously an incredible mom, with a great family.
I don't know how you do all the things you do.
I'm one of the "lurkers" and you continue to amaze me.
Colleen
I do the same as you where I push aside the gravity of diabetes just so I can get through the day to day stuff.
Then for an instant, the fact that Brendon has diabetes hits me with such force and I can't believe that he was given this fate of having diabetes.
Penny,
As someone who has had diabetes since she was a little kid, I am really starting to appreciate everything my parents did for me "because they had to" for so many years. The OC community has helped me to see things from their perspective more, and I thank you and the other parents who share your thoughts here for that. As far as staying busy so that diabetes isn't at the forefront of your mind- I think many of us do something similar to try to deal with this disease that doesn't have a vacation. It's a one test, pumpsite change, day at a time disease, and there is no other way to do it. And it sounds like Riley knows you're there when he needs you. I hope you have a support group in your area, sometimes that helps. I know the OC has helped me a lot the last year or so, and none of us can go this journey alone. Hang in there.
Penny -
This is an incredible post - from an obviously excellent mother.
I have moments every so often when I think, as you did "Will there ever be a cure?" But I do a lot of moving - I figure if I move, the diabetes won't catch me. I think that might be normal - or maybe not - but it's normal for me.
Sending you a giant hug.
Nicole
What a great post, Penny. You described it so well.
I've been doing that a lot lately - pushing the diabetes aside. Not the treatment, not the monitoring, just the emotional junk that goes along with it. I am not usually the type of person who ignores things in the hopes that they'll go away, but with diabetes, I have to or it will eat me alive.
Penny,
This was very well written. Gracie is still not on short acting insulin, only long acting, so I know I miss a lot of the day in day outs of more intensive insulin therapy of her diabetes. I can say that everytime I test and she is in the 200's, my heart sinks. The reason is that 5 days out of 7 I can pretend she doesn't have diabetes with near normal numbers, a few tests, and only one shot, it is ALMOST overlookable. It is those two days of the week where we ring in high throughout the day that has me running for the hills tears in my eyes for a few moments to just let the grief and fear out without scaring the heck out of my peanut. I know that for my diabetes I so rarely deal with any emotions in regards to it, I never feel like I have time. I'm glad you shared this post. It made me sad, but in a good way.
Oh, I can so relate to what you wrote. Thank you for being so brave and putting this out there. My Daughter is in her 7th month of living with type 1.
Beautiful post, Penny.
Describes perfectly what we all have to do to stay strong and sane for our kids.
Thanks for writing this.
Penny,
I've been a "lurker" for awhile, but this totally had me at my desk crying remembering times when my mom had to come in and lay with me (when I'm low or too high and at home I still make her :o)). You are amazing and Riley is lucky to have a mom like you.
:o) Allison
Penny, can you please drop me an email? book_ish at yahoo dot com Thanks.
Penny
You're the best mom for Riley.
I got diabetes with I was 15. I remember over 10 years later when the doctor expressed surprise at the state of my eyes (still very good). He said my mum (Ireland) must have taken really good care of me, otherwise they wouldn't have been like that.
This is such a hard job, I can't imagine how heavy that load is to carry.
Thank you for sharing the struggles. I'm inspired to work raising support for a cure for myself and for moms like yourself.
We also go through the motions workmanlike and then occassionally it hits us. I can't believe this is happening to us.
Thanks for sharing this.
I saw this post listed for January's Perfect Post award (at Suburban Turmoil) and the title of your blog drew me in.
One of my closest friends has a 4 year old son who was just diagnosed with Type I a couple of months ago. Life for them changed in an instant. The struggle to maintain "normalcy" is a daily struggle.
I'm going to forward your site to her. This was beautifully written.
Colleen and Allison,
Thank you for delurking. I love to learn of others that are reading my blog. And, Allison, it sounds like your mom is pretty awesome too.
Kate,
The OC seems to be all the support I need.
Nicole,
We're normal. It's everyone else who's strange:-)(Big hug to you too)
Julia,
I am not one to usually have my head in the sand about things either. I usually confront things head on and move on. But, the problem with this disease is you can't move on. It's always there.
Sarah,
I've said it before, but I'm so sorry that this happened to your Gracie.
Michelle,
I'm not brave, I'm just doing what I have to do. This blog helps me way more than it will ever help anyone else.
Sandra and Carey,
You're welcome.
Bernard,
I don't know if I'm the best mom for Riley, but I do know I'm glad God let me have a try at it.
Susan,
If you would, also give your friend the link to this site. It's a collection of diabetes blogs and it has a section of blogs written by parents of children with D. They are all great. (http://www.diabetesoc.blogspot.com)
And, Shannon, I didn't mean to leave you out.
Although it may sound bad, it's comforting to know that others understand because they are going through it too.
Penny - this is a wonderfully written post.
We're pretty much on par with how we deal with this disease lately. I try not to let it take over my day - we just do what we have to do.
There are times, however, when it does smack you in the face and you just have to have a "moment" to be angry and upset. Like with many of the parent blogs out there, I pictured myself with Dani, sitting on the bed, rocking her back and forth while having her wrapped in a blanket. I can picture easily because, well, I've been there.
Hang in there - you're a terrific mom.
As a person w/diab, I still try to push it aside every day and go the "keep busy" route (as Kate says). It just boils down to the fact that some days are better than others, and I hope that there will be many good ones ahead.
You're a good mom, Penny. Take care.
Incredible post. Really.
Even living with it, I too try to push it aside sometimes (probably more than sometimes).
Thank you.
Penny,
Very good post,it's such a hard disease + always there. You have to have moments to grieve too, so you can go back out and be strong for Riley.
I don't even know you, and you are the most amazing mother. Riley was blessed when you were chosen to be his mom. And what a strong mom you are. My heart goes out to you & I'm crying w/ you. Good luck today and always~
Cheri
from one mom to another,
your comment made me cry. thank you. I needed to hear what you said.
I say us parents of kids with D have a special bond, but it's not just that, there is a special bond between all mothers who love their children with fierce intensity.
From one mother to another...(((big hug)))
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