Its one of those drag your butt kind of days thanks to diabetes. Last night was my usual routine of sleep, wake up, rollover, sleep, wake up and...holy crap! Its 4am already!
There was a fleeting thought in my head of "He has been high a lot lately. Would it really matter if I waited those three more hours until we both get up?"
The thought was followed by my feet hitting the floor and me stumbling down the hall to test my sleeping son. He was low. The answer to my question--yes it would have mattered. Best case scenario he would have "rebounded" and been high in the morning. I would have attributed the high to not enough insulin and considered upping his basal rate rather than dropping it like it should be.
My son had mentioned yesterday that his readings were all over the place, in part due to his own errors, and that he felt really weird. This helped to motivate me to move my carcass from my warm and cozy bed.
When I saw the low and stumbled towards the kitchen to grab him a glass of juice, I once again said "thank you". I reminded myself again how lucky I am to be able to test my son. I remembered parents who have lost their children to the dia-beast. I am dragging my butt. I desperately want to crawl into bed but I have too many other things to do. Tired or not, my son and I are alive and ready to take on another day of life with diabetes and that is a blessing.
"One. Two. Three. Four. Five. Six" SNAP! The infusion set is inserted into my son's stomach. He writhes in pain, rubbing his stomach. His eyes are closed as he tries to compose himself.
I usually tell him to "suck it up!" I tease him about being a wimp and he gives me a lecture on the varying levels of pain a site causes depending on location and insertion method. This time I said nothing. I paused for a minute and watched him in awe.
We will soon have been at this game called diabetes for thirteen years. That is 87% of his life spent living with diabetes. As of today that is at least 37,776 times that he has had his fingers lanced to make them bleed so that I could know his blood glucose level or ketone level in his blood. He has been poked by a syringe to inject life saving insulin into his body a minimum of 5500 times. He has been stabbed by an insulin infusion set injector at least 1300 times. I don't think he has ever cried. I don't remember ever having to chase him to lance or inject him.
He puts off changing his sites. He forgets to test. He will do anything rather than endure another injection or have blood work done. I will give him a hard time. I will tell him to deal with it. Why? Because in my head, I still see that lifeless little boy that I willed to live all those years ago. I vividly remember what life without insulin looked like. There is no option but this one.
Despite that hard line; despite "knowing" that there is no alternative, last night I allowed myself a moment to recognize how brave and strong he really is. I HATE lancing my finger. I squirm and cringe. I jump and do anything rather than voluntarily stab myself. I hate getting blood work done and will not watch and the needle enters my veins. The needle that I stuck into my son's stomach is bigger and longer than most needles I have experienced. I had an IV put in my hand about a year ago and after the nurse was done messing about, turning it, and twisting, I was almost sick to my stomach and fought to stay upright.
If I had to have infusion sets stuck in me on a regular basis, I would be an Emla addict and I would still cringe and squirm. My son used Emla for a few years, but then he decided not to bother with it any more.
I still believe that injections, insertions and lancing is a FAR better alternative to life without insulin but I also remain amazed at the pain that a person with diabetes goes through to stay alive on a daily basis. I am amazed at all that my son has gone through and he still simply takes it all in stride each day.
I am not really into Valentines Day. When my boys were younger, we did the cards for their class. If I was feeling creative, we did "hugs and kisses" or Valentine pencils. For those times when I totally forgot that Valentines was about to happen, we did heart shaped sugar cookies that the boys took to share with their class.
My boys are now much older and school Valentines are no longer important. This weekend I received an email that has made this "Hallmark holiday" very special however. Diabetes Advocates and the Diabetes Online Community have come together to help the Life for a child program, sponsored by the International Diabetes Federation, which aims to take "contributions for donors (to) go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive."
There have been times in the past 13 years when money was tight, insurance was not available and I had to limit the amount of testing my son did during the run of a day. That was scary enough but I never had to worry about him not having insulin to cover his food or stay healthy. For children in developing countries, these worries are very real but this Valentines Day you can help!
Spare a Rose, Save a Child, is a simple and amazing way to make a difference. This year, when you head out to buy your beloved a dozen roses buy eleven. No, you will not then be spending your night alone or sleeping on the couch because you will have taken the money that would have paid for that last rose and donated it to the Life for a Child program! You will have helped to save a child with one beautiful rose. Your partner will love your thoughtfulness much more than the extra rose. It really is a win-win opportunity!
So if you were planning on sending me a dozen roses on Thursday, I will fully understand when I receive 11--actually I will be pleased to note that a child will be able to inject life saving insulin for another week because I received one less rose. And, if you weren't sending them to me, I am sure whomever was getting them will be just as happy to know that you spared a rose to save a child!
Happy Valentines Day!
This week I was going to write about Diabetes Art Day. I actually I planned to participate until I took a look at the amazing creative efforts of people and felt that my stick men would just not cut it (even if I made them out of test strips!) . That was the plan but life seems to change plans.
I was speaking to a friend the other day. His daughter in-law and grand-daughter were returning from the funeral of a young man. I had heard that a friend of this woman's son had passed away and I felt bad for those who loved him but that was my last thought...until this conversation. That is when I learned a bit more about how he died.
This young man, someones baby, someones son, was just 20 years old. He had Type 1 diabetes. He was active and involved in sports. He went low while playing sports, passed out, seized and never regained consciousness.
My heart stop. I had to remind myself to breathe. My friend said that he really hadn't wanted to tell me about a diabetes death of a young man but he felt that I would find out anyway. I somehow managed to continue the conversation noting that I sadly am well aware of how deadly diabetes is. We continued to talk and educated. He understood much more about my fears after years of spending time with myself and my son. He knew that this could be my child and that my fears were justified.
I don't know this young man's family. I don't know about his life. I know that he is only just older than my oldest son. I know that his family is now living my worst nightmare. I know that this isn't right. I know that young children are not to die because of diabetes. It just should not be.
Parents worry about their sons drinking and driving. We worry about them trying drugs. We worry about them getting into bar fights, having an accident at work, or driving too fast. I know...I worry but I don't obsess.
Last night, my internal alarm went off at 2 am. I rolled over, looked at the clock and before I could groan about how unfair it was that I have been getting out of bed throughout the night for all of these years, I was up. As I walked to my son's room, I said "Thank you." I repeated those words as I searched for his meter, strips and lancing device. I said thank you again, when I saw a high reading and reached for his pump to correct. Thank you. Thank you. Thank you.
I realized that as I was standing there testing, another family was waking with no one to test. They were wishing that they were me. They prayed to have their time back to hold their son, to watch him sleep, to be able to test him and see him wake for one more morning.
I headed back to my bed grateful for all that is. Thank you. Thank you. Thank you.
