Six months ago today at this time Riley was sitting in the floor watching TV and eating a frosted strawberry poptart and drinking a big glass of apple juice. I was straightening up a little and getting ready to go to the grocery store. After he finished with breakfast, he got on the couch. He had finished his apple juice and asked for more. I obliged. He sucked down the juice in no time and asked for more. I was in the bathroom brushing my hair. I came out and looked at him. I said, "Why do you want more juice?" He just looked at me and said, "Mama, I'm sooo thirsty." Red flags went up in my head. I had a bad feeling in the pit of my stomach. This just wasn't normal for him. So, I checked his sugar with my machine I use at work and the rest is history. (to read the story of his diagnosis go here, my first post)
Fast forward six months, Riley is now playing a video game (Star Wars). He just finished eating a pancake with sugar free syrup, mixed fruit, and caffeine-free Diet Mt. Dew. My how things have changed. He's now hooked up to a machine that delivers insulin about every 3 minutes. He's already had his finger stuck twice today (3 AM and pre-breakfast). He's had his morning dose of insulin.
I started thinking last night that today would be six months and I started crying. All the memories of that day came flooding back and I just couldn't help myself. I remember feeling numb that day. I guess I was in shock. I really had no concept of how much life would change. Even though I'm a nurse, I kind of thought they'd just tell us how much insulin to take and we'd check his sugar and give his insulin and that would be that. If only it was that easy. I quickly learned there is no set dose, that it adjusts almost constantly. After Riley got his first doses of insulin (Lantus and NovoLog) his sugar dropped from the 400s to the 50s in an hour or two. Just a taste of what we would be dealing with in the following months.
Since his diagnosis, we have had 2 different endos (with a combined total of 3 visits), a pediatrician visit, and numerous visits to the pharmacy for strips and insulin. They know us by name there now. I've had many a sleepless nights, lots of highs and lots of lows (literally and figuratively) , and I've done quit a bit of crying over the last six months. I've probably cried more tears over the last 6 months than I have the rest of my life combined (with the exception of the baby years). I used to never cry. Usually the only time I cried was when I watched a sad show on TV. I didn't cry over our lives. We were happy. We were healthy. I guess we still are. It's just that this disease has a way of wearing you down. My crying has decreased quite a bit from what it was when he was first diagnosed. I cried several times a day back then. I used to just look at him and burst into tears. I don't do that as much anymore. Sometimes I look at him and I'm overcome with sadness, but I don't cry as much anymore. I've even cried a few happy tears over the last six months. Sometimes I look at him smile and I'm just overcome with the emotion of how lucky I am to be his mom.
In some ways, life has changed drastically over the last six months, and then when I look at it from another angle, life hasn't really changed all that much. We still do all the things we did before. Diabetes hasn't changed what we do. It's just made me carry of bag full of "goodies" with me everywhere we do go. We never leave home without "his bag". It is said everytime we leave the house. "Do you have his bag?" Maybe we should name the bag. His bag is chocked full of the must haves for PWD. There are a few syringes down at the bottom, glucagon, supplies for his pump, his sugar machine, snacks, a box of juice, a fast food carb book, ketone strips, his pump holster (it has the Animas phone number on it), and a few toys (men) for Riley to play with (OK, I guess that's not a must have for most PWD.) I'm sure there are probably some used test strips in there too. I go through and clean it out occasionally. There are usually a few bloodied cotton balls in there too. We also have a notebook (purple) that goes with us everywhere. I keep all of his records in there. I also have a list of foods and carb values in there that was given to me, well, six months ago today.
Anyway, I'm feeling a little sad today, but there's some happiness mixed in there too. Reliving his diagnosis is not fun, and to think of how care-free life used to be isn't so great either. But, we've come a long way. Riley's sugars are the best they've been in the last six months. We were lucky enough to find an endo that would listen to me and help me get him on the pump. I know I had quite a few negative posts around the time of the pump start, but now, I really do love the thing. I've become kind of attached to it. It's my buddy :-) I am truly blessed in so many ways that I couldn't even begin to name them all. My biggest blessings are my children. They are happy, and they are healthy. What more could a mother ask for? ( Oh, yeah, maybe a full night's sleep. That would be nice.) But, other than that I have everything I need and then some.
9 comments:
My 6-year old daughter was diagnosed with diabetes almost 8 months ago. Basically, I want to say thanks for sharing a little part of your life with us. And that I know what you are going through - so many of the stages of dealing with this disease and emotions that I have had were mirrored in your entrys. I also checked daily for updates when your son was first starting on the pump so that I may be better prepared for when that day comes for us (my daughter has an overwhelming fear of the pump!) But again, thanks so much - your blog makes me realize that I am not alone!
Jen
Those anniversaries are tough.
I think that, to a certain extent, they always will be.
But you really do handle even the most difficult aspects of this disease with an amazing amount of grace-- as demonstrated in this post.
And Penny-- your willingness to share your struggles, and at the same time, remind us all of the joy that still exists in this new way of life, is truly an inspiration.
It's always good to look back and see how far we've come with our children. Your post today made me think about the day we found out my son had D. He was 13 and had been sick for weeks, misdiagnosed with colds and sinus infections, when we finally told the Dr. to please check him for D. They were shocked and thought we were crazy. Within 2 hours of taking his blood, they called and instructed me to get him to the closest hospital. I was a basket case for bit, scurrying to find out what paperwork I needed to have with me because the hospital was in Germany. When I got home to pick up my son, I was trembling and probably a bit teary and he said "Mom, let's just get there so I can feel better." That was the first time I knew that it wasn't going to get him down. The German hospital was a little scary at first, but the most wonderful Pediatric Endo was on call and he became the doctor for my son for our 2 remaining years in Germany. He reminds me daily with his actions that he will be just fine and the D will just be a sidenote for him. For the wonderful medical advances with this disease since it claimed my father at a very young age I am truly grateful and I know that in our sons' lifetimes we will see many more. Isn't it great that the kids can just be kids!
I know anniversaries are tough. I just passed my 6 month anniverary on March 29.
But...if it makes you feel better, I can honestly say you are probably more upset about him having diabetes than he is. Most of the time, I don't mind having diabetes. It's a nuisence, it can be fraustrating, but not much else. I don't know, maybe I haven't hit my break down moment yet. But I am doing okay...and Rilee will too.
Thank you so much for your posts. I don't read many from parents of the really young kids. My son is 3 also (Dec. 26 b-day). He was diagnosed with D at 20 months. The six month and 1 year anniversary I looked back and was happy we had survived and he was thriving. I am looking now to the 25th of April when my son will have had diabetes for half of his life. While the docs and nurses find consolation in the fact that "he will never remember his life without diabetes", as his mother I will always remember the days when a mother's love didn't mean I had to think so much!
"Buzz Lightyear's" mom
Has it already been 6 months, time passes so quickly. He has adjusted to all the changes in his life so well. That's how kids are, they do deal with things better than we adults do. God has blessed you with a lovely family and He gives you strength for this trial. God knew before Riley was diagnosed that you would be a super mom. He has entrusted you with a special little boy and He knows you are able to be the best mom any little boy could ever have.
Love and prayers,
Aunt Linda
You're doing a terrific job, Penny. I know yesterday on the radio when we were talking about Danielle and what it was like when she was diagnosed, it took every fibre of my being NOT to start crying. It's still fresh in your mind - mine too. BUT, look at how far we've come in such a short period of time!
Keep up the great work - we will never master this disease, but we can sure give it a run for its money.
Big hugs.
Just wanted to wish you well. My son is 15, Type 1 (also a pumper) for 6 years and doing well. My brother is 40, a police officer, Type 1 for >20 years and doing well.
Best wishes
Peter
www.petermcdrunning.blogspot.com
Thanks everyone for your comments.
And, Peter, thanks for reminding me that many people live long and happy lives with this disease.
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