When you parent a child with diabetes, it stinks sometimes. Things just don't go your way. Numbers get high and numbers go low. Numbers stay high for way too long and numbers stay low for way too long. Ports that administer insulin get clogged. Hormones kick in. Sport exercise during the day results in low blood sugar in the middle of the night. All of these things cause your child to generally feel like crap. Your child's sweet face looks at you and asks you to take away the pain or the hurt or the bellyache and you just can't. You can treat the symptoms and hope for the best, but the next day is another day of the exact same crap! It is a continuous loop of self-blame, sympathy, eternal love and anger at something that doesn't care about you or your kid. Diabetes is not human. It doesn't care. So, there is no one to blame. The feeling of wanting to blame someone or something just hangs in your house like the bad smell when you fry fish. It is frustrating to have nowhere for that anger to land and be placed.
The number one rule for mothers is to protect their children. Diabetes does not respect this rule. Every religion, race, nationality and animal classification somehow respects this precious golden rule but diabetes does not. If it could be a person, it would flip the golden rule the bird. It threatens God, Darwin, Karma and any other belief system you may have. However, diabetes is not a person. Again, no one to blame. Sure, you can try your best with your futile attempts, but at the end of the day, your attempts are just that - futile and temporary. Anything that works to keep his blood sugar steady one day will not work the next day. It is disheartening to say the least. It's maddening, sad and futile. That pretty much sums up what it is like to care for a child with diabetes.
Tonight I experienced a full dose of all of the above.
Rocco wears an insulin pump. We like the one from Medtronic. They are an awesome company that I feel will have sufficient resources to play a significant role in curing this disease. This is the reason I am loyal to them. Plus, I see Rocco's pump as a partner. Like a little mouse that helps me keep him alive. I love that little mouse.
He has had his pump attached to him for five years. It is attached by a thin straw-like plastic tube that sends insulin from the pump into his body. It attaches to his body with something we call a port. It is about the size of a quarter and is flat. A new port is inserted into his skin about three times a week.
You can insert the port on his bottom, arm, leg or belly, as long as these areas have a little fat. When he first got his pump, he was only two-years-old, so we decided to put it in his bottom. This was the only place he had any fat. Plus, we figured that if he couldn't see it he wouldn't rip it off. Plus, he was so small that his little bottom was the only place he had any fat. But now, he refuses to insert the port anywhere else but in his bottom, fearful that it will hurt. He has been doing this for five years, and the scar tissue that has built up on his butt is scary to me.The insulin will not go through efficiently if scar tissue is in the area. I always want to try another site, but he was scared so I haven’t pushed.
In an effort to get him to change his mind, I decided to wear the pump as an example to him. First I used my bottom. Then the next day, I used my leg. It didn't hurt in my leg so I felt confident that he could do it too.
Last week, I got him to at least try it on his leg! We put some numbing cream on with a bandage and waited for fifteen minutes. We were almost ready to insert it when he started to cry. He was very scared and I just didn't know what to do. So I did what every great mom does - I bribed him. The tears were breaking my heart and I blurted out, "If you do this I will give you twenty-five dollars!" What the hell did I just say? He was so impressed that he stopped crying. So, he said okay, reluctantly. I was thrilled it worked! I put the insertion device on his leg and was ready to push the buttons that insert it when Michael yelled, "Shar, wait!" Then he proceeded to give his opinion that Rocco was too skinny on his leg and he doesn't have enough fat and let's wait until he gets a little older, blah blah blah. I knew Michael was right (which is probably the reason I was thoroughly annoyed with him), but I had Rocco so close to being okay with it. Michael ruined my mojo. I didn't want to make any of this dramatic in front of Rocco so I conceded. Michael was right. We could wait until he was a little bigger and had more fat to insert the port.
However, it still bugged me a week later because I couldn't stop thinking about an article I read where a person had Type 1 diabetes for twenty-five years and was a thin woman and eventually ran out of room where she could position the ports because she had built up so much scar tissue and was now unable to give herself insulin through a pump. It seemed unimaginable, but it still penetrated my heart so much so that I memorized the story and am now fixated on it. My head knows I am overreacting, but when I look at my sweet boy, my heart pushes for a new port location!
So tonight we tried again! At first, he was a little excited and scared. He wanted that $25 that was still (literally) on the table. He said he wanted to man up so he could get enough money to buy a Lego set. All right tiger, let's get this done!
But about 45 minutes later, we still hadn’t done it. He was crying and carrying on. I told him all sorts of reasons why it wouldn't be a big deal. He would get brave, but as soon as the inserter touched his leg he would pull back. If he pulled back at the wrong time the needle could get jammed in his leg in a weird way. I didn't push and we waited patiently. I told him he didn't have to do it tonight and that we could try next time. He was mad because he wanted to "just try it for one day"!
Finally, after an hour, we did it!
He cried as the first injection of insulin went in and he said it hurt really bad. I held him until he stopped crying.
Rocco isn't a dramatic kid, he never lies and he doesn't cry wolf. I can trust that when he cries, he means it. Holding my crying child that has already been through so much in his young life made me just want to get mad! This was the moment when rage for a disease that has no face bubbled up inside me. I tried to keep it in as I held him. He finally calmed down enough to pull on some pj pants. As he did, he accidentally ripped the port right off!
OMG!!! He burst into tears and screamed at the top of his lungs! "I JUST WANTED TO BE BRAVE AND WEAR IT FOR ONE DAY AND NOW I HAVEN'T ACCOMPLISHED ANYTHING!!"
I kid you not. I mean, what kind of a kid says that? He is so amazing. Poor guy. I almost started crying and had to physically bite my lip to stop myself!!
These are the moments when you want to look at your child and say, "its okay baby. We don't have to do this anymore. Mommy will call the diabetes fairy tonight and tell her to stop this. We don't have to do diabetes anymore. I promise." But, you can't. Your only option is jam another port into your child because as he continues to cry, his perfect blood sugar of 110 (which was his blood sugar number when we started all of this BS) is climbing with every tear he sheds. His body sees his crying as stress, and stress raises blood sugar. Crap!
I grabbed him, held him close and put my cool hand over hisforehead. This always seems to calm him down. While we were sitting there, I realized Zeke was in his usual hiding spot in the playroom. He hates when Rocco is in pain or crying due to his diabetes. One time when they were three, Rocco was very high and we had to give him a shot (works faster than the pump). We hadn't done a shot in some time with the availability of the pump. When Rocco saw that needle he freaked out and started crying. Zeke laid down next to his brother and put a blanket over both of them and started yelling as Michael held the needle. He kicked Michael and yelled, "Don't you hurt my brudder! Stay away from my brudder!" It was one of the moments that will forever be burned deep in my soul. So poor Zeke now hides with one eye on Rocco and one pretending to be interested in some project. I knew he needed me as much as Rocco, but at the moment Rocco was the one crying. I silently laughed in my head and thought about how I should start saving now for Zeke's therapy that he will probably need. These are the exact reasons why I subtitled my blog "the delicate balance" of raising twins, one with Type 1 diabetes and one without. I wished Michael was home from work at that moment so we could each tend to a boy. Not to mention, before the whole port change, Zeke had asked me to play Legos with him and had been waiting for over an hour while his brother howled. Damn...
So now we were left with the prospect of doing it all over again! I told Rocco that we should give it a rest and just do the bottom again. By now, I was so done and I wanted to let his determined heart off the hook. He started to cry again. He yelled, "I JUST WANT TO BE BRAVE AND DO THIS!" looking at me with fear and determination. Honestly, I didn't know what to do. I knew that if we didn't persevere, he would be freaked by the pain and only remember the tears. I was afraid he would associate this experience with pain and never try again. This was the kind of moment every mother fears. You know, the most dramatic moment you think they will remember and become a pinnacle turning point in their personality development. You only can imagine The Wizard of Oz saying in a deep voice "you better think of something quick mom because if you domaker his kid is about make up some terrible version of the truth, cling to it and let his next 80 years be changed by it foooorrreeevvvveerrrr!!!"
I couldn't decide what to do so I wimped out and asked him! He decided he wanted to try again, but this time he kept pulling his leg away from me every I tried I came at him with this.
Now his blood sugar is rising with every passing moment. Michael, who disapproved of this last time and will surely be mad that I am attempting it again, will be home any minute and Zeke is STILL waiting for me in the playroom. I squelched the anxiety building in my chest so that I wouldn’t pressure Rocco. After another 45 minutes of my little boy talking himself into it, he stuck out his leg and said, "Go mom, Go now!" I held the inserter up to his leg and pushed the buttons. He said, "OUCH!" Oh God. Then his face started to tear up and simultaneously contort into a combination of fear and pain. He grabbed my arm, squeezed it hard and started to raise his voice as he said, "Moooommm, it hurts soooo baaaaddd! Ouchie! Ouchie! Ouchie!" Knowing that he never cries wolf, I knew he meant it. So, when I saw the look in his eyes, I panicked and asked "Do you want me to take it out?" He cried, "Noooooo!!" still trying to be brave. Then he said, "It burns! It burns! Ok! Take it out!"
Relieved that I had permission, I reached over and quickly pulled the port out, grabbed my baby and held him as we rocked together on the floor.
Now what? He still has no insulin running through his body and Zeke is STILL waiting in the playroom.
Suddenly, I got mad and took control. I asked Zeke to come over by Rocco and me and stood both boys in front of me and I firmly said, "Mommy is really mad at diabetes right now. I am not mad at either one of you. Rocco, you are incredibly brave and you will get your $25. Thank you for trying, but tonight we will do it on your bottom like normal. Zeke, you are an angel for being so patient. I am sorry if you were scared for your brother. I love you very much and you get $25 too. Now go and take your showers. I’ll get another port ready. After we’re done with that, you can both go up and play video games in your bed."
Both boys stood next to each other mesmerized by my firm directions, until I said "video games in your bed." This is a treat I only allow on special occasions or when I need to bribe them. Both boys jumped up, yelled "YES!" in harmony, high-fived each other and ran into the bathroom.
As I got the materials ready for the third port change of the night, priming the tubing with insulin, the pump started beeping at me. What the ....? NO DELIVERY it rudely said on the screen. I said out loud, "OH COME ON!"
I threw that port away and started again. Both boys were out of shower and last port change went well. Finally, Rocco had his lifeline back on. I breathed a sigh of relief and put the boys to bed, with the iPad. I even bought them a game app that cost $6.99!! I just couldn't care about things like that anymore. I was spent, both figuratively and literally ($25 + $25 + $6.99). They both said they would split the cost of the game app from each of their $25 dollars, did the math together and figured out they would each have $21.50 left.