Iam the Mother of a a Diabetic Child

I am the mother of a diabetic child. I don’t know what it’s like to go to sleep at night and know for certain my child will wake up in the morning. I don’t know what it’s like to sleep the whole night through without waking up to do blood tests on my sleeping child. I don’t know what it’s like to prepare a meal without a calculator, measuring cups, and a gram scale. I don’t know ...what it’s like to drop my child off at school and know he will always be in the care of someone who knows how to take care of him. I do know what it’s like to force feed sugar in the middle of the night knowing I am sacrificing my child’s teeth to save his life. I do know what it’s like to draw up insulin at 2 am and pray to God I’m not too sleepy to make a fatal error in judgment, technique or calculation. I do know what it’s like to sit underneath the dining room table holding my sobbing child, explaining to him, “No, we can’t take a break just this one time.”while I inject insulin into his already bruised arm. I do know what it’s like to walk away from the pharmacy counter with an armload of supplies and realize I’ve just gone through another box of 200 syringes. I do know what it’s like to help my child march bravely past the juice and cookies at the school reception that was supposed to be his reward for achieving Student of the Month. I do know what it’s like to look into my child’s eyes and tell him he has an incurable disease and explain to him what that means, And then to be comforted by him when I’m the one who can’t stop sobbing. I do know what it’s like to love and cherish my child every minute of every day, to know that I may someday donate a kidney to him, and that if he were in need of a heart, mine would be out of the question, because it broke a long time ago.I am the mother of a diabetic child.

The almighty dreaded 1st sleep over…..

Well I did it…took the plunge….jumped off into the deep end of the pool…took a deep breath and let my son do his very 1^st sleep over EVER. Yes I said ever. When Michael was diagnosed on March 21, 2012, he was 9, about to turn 10 in a few months. He was just at the age to start doing sleep overs with his friends when the beast decided to rear its ugly head. So needless to say, his little life and all the things that were supposed to come with it, got put on hold. Mainly LIVING got put on hold. All the things that kids are supposed to do, got stripped away in one single dreaded morning. That morning of DX 3/21/12, the day from hell.

You never realize how much you take for granted until your life gets thrown off course. Kids are supposed to be riding their bikes outside, playing in the dirt, stubbing their toes, going swimming, playing football in the street only to hear their mother yell “how many times do I have to tell you kids not to play in the street”. They are supposed to be able to go spend the night at their friends and eat crappy food and tell ghost stories and stay up really late. That’s what is supposed to happen, that is what is supposed to be….but then blam…in your face…Type 1 Diabetes kicks your ass and your whole life stops.

For 2 years since DX, we have learned how to manage the day to day aspects of this disease. Learned how to finger point, inject, count carbs, feel the lows, feel the highs, battle the mood swings, dry the tears, but really, the life got sucked out of us. But little by little, we learned how to accept, how to cope and how to roll with the punches. He is now 12, and like I said, the very 1^st sleep over ever, finally happened!

Aug. 2^nd, 2014, my son got his freedom. The freedom to just BE. To just be a little boy, with his friend and feel like he was for once in his life, in control of himself. Now granted, the mother of the little boy he stayed with is a Nurse and the dad, a Type 2 Diabetic. So this was kinda a no brainer and something a tad easier for me to do. Let me tell you….my son is just amazing! Of course when the parents came to pick up my son, the whole 1 hour crash course/drink from a fire hose education process took place. You know, the whole..okay, carb ratio is X, correction dose is X, min finger pokes is this, Levemire gets given at X time, oh and please set an alarm for 2:30 to do a BG check and please text me his number. Oh and here is how you administer the Glucagon!  Oh, and please forgive me if I call you 1,000 by tomorrow morning.

Well after they took the drink from the fire hose, off my son went. He left with out me being in tow, and off he went to manage his life. Well he did it! 1 ½ hours into it..I get a text…Mom, don’t panic….well shit, thanks, you know what that means right! He’s LOW! 2 seconds later, text comes from the mom…Christy, he's low, don’t worry, 4 starburst and juice is on the way! He's going to be fine! So my mind is racing and of course, panic sets in, but I know and I have to trust that he is in good hands and knows what to do. Recheck due in 15 minutes to confirm his BG has come up….the longest 15 minutes of my life, but yes, I got the text and BG had increased to safe level. Whew…okay we got that!

So he went to dinner with his friend, then they went to the movies and went home. My son texted me his numbers throughout the night, he facetimed me when it was time to inject his Levemire and he answered his phone whenever I called. But hey, I was good, I did not call too often. The night time is the hardest for me as well, you know, night time is the scary time. But needless to say, the night went off without a hitch. He had the best time ever, and he made it just fine. They played video games, watched movies, ate pizza, ate rootbeer floats and just did kid stuff.

After 2 years, I was finally able to give up control and put control into my son’s hands. I let him know that he was a very responsible young boy and that I trusted he would be able to do this just fine. AND HE DID! He came home so happy, a smile from ear to ear….that is what makes it all worth it. The smiles, the giggles, the happiness that comes from just being a boy and just being able to BE.

We are getting there, I am getting there and my son is getting there. We have a long way to go, so many things to still learn, but slowly we are getting there.

Still Waiting....

IM STILL WAITING....

Its been a year and a half now since my son was diagnosed with this unforgiving disease. Its seems like just yesterday that I was sitting in that blue walled room with baseball bat borders, getting the horrible news that my baby, had some incurable disease. In the past year and a half, we have done everything the Doctors have said, I have read everything I can get my hands on, I have been counseled and coached by my angles, Gina Lane and little Zoe. But here I still sit, no where better off then I was a year and a half ago. I sometimes think we are stuck, stuck here at day 1, not knowing a damn thing…still waiting.

Nothing is ever the same, this disease is unforgiving and makes no damn sense what so ever. You can count every carb to a “T”, you can cover perfectly, and this beast makes it’s mind up that it aint going to play nice in the sandbox. Unexplainable highs, high’s that you cant for the life of you get down. Unexplainable lows that seem to go in that downward spiral and you are seconds from calling 911 to get an ambulance to your house at 2:00am. Sleep? Whats that? Us “D” parents dont sleep and now, I literally dont sleep at all. Diabetes is so unpredictable these days Im afraid that he wont wake up in the morning like so many other child who have died in their sleep.

The “what if” game continues, and never seems to stop. What did I miss, what if I had done this, what if I had done that..what if, what if, what if. It’s hard for people who dont have T1D children to understand what you go through. You can try to explain to them what this disease really is, but unless they have a child of their own dealing with this disease, most just dont get it. They all mean well and bless their hearts they try.  I stopped getting angry and have pretty much just submitted into this diabetes shell and just know that us “D’ parents, truly are alone in this fight.

It gets tiring hearing all the time about how if my son exercised he could cure his disease or if he just didn’t eat “sugar”, he would get rid if diabetes. How about this one, “my Grandma had diabetes, she lost her feet then died”. Really? Thank you for informing me of that right in front of my child. And by the way, that’s Type 2 Diabetes, not Type 1.

Its been so long since I blogged, I think about it all the time, I think I have just become deflated by this disease that my get up and go...has got up and went! When my son was first diagnosed, I was full on Advocate, full on raising money, doing diabetes walks, speaking at the State Capitol to Senators and Reps, doing everything I could to raise awareness and find that cure. But a year and a half later, Im deflated, defeated and just curled up into this diabetes shell. Its all I can do to manage the day to day injections, counting, checking, monitoring, feeding, blah blah blah, that this disease has once again kicked our ass.

Everyone said to give it time, that with time it would become easier. They said this would just become part of who we were and it would just “be”. Well, Im still waiting....waiting for it to become easier...waiting to stop worrying so much. Waiting for all of this to make sense. Waiting for life to resume to normality. Im still just waiting....waiting for something that may not even exist anymore...waiting.....

 

Diabetes...in all her bitchness....

You inject insulin to cover his food, you count the carbs to a “T”, you know his carb ratio, you got this….you cover his food perfectly, you know his next check will be perfect……….NOT. You can count the carbs all day long, you can know the carb ratio but when diabetes does not want to play nice…it’s a downright bitch. Just the other day, we had it, finally got his numbers to a good range after another growth spurt. Thought we would be sitting good at least for another month or two. Nope, didn’t even last a week I think. Last few days I haven’t been able to get his BG under control very well, my heart would go to bed in perfect range, 2 hours later, hitting high 300’s, low 400’s your like, what the hell? Where did that come from? You go over it in your head, all the food he eat that day, calculating all the insulin and you know you didn’t make a mistake. But there is it, Diabetes in all its bitchness, taking control once again. Taking control of your childs body, but you thank God that these high blood sugars happen while he is sleeping, at least he wont feel the pain from this high. He wont get the stomach cramps, the headache, the emotional toll. You begin to become thankful for the little things that God allows you to have, like sleeping through a miserable high.

Tonight was one of those nights again. Ate dinner, covered perfectly, then 1 hour later, my child is starving. Right then you know, he just ate, and now he’s starving, we have high blood sugar, he’s not having a real “hunger”, he is having what I call Diabetes Hunger. It sucks having to tell your child who thinks he is starving, “honey, your having a diabetes hunger”, drink some water, lets give you some insulin so we can bring you down. Then, here comes the tears, mom, please make this go away? Why do I have this? I just want to be normal, please mom, make this stop. Everyone makes fun of me now, they call me “Diabetes Boy”, I don’t want to be like this, make it go away. There it is folks, the gut wreching hell of being a Mom that cant kiss the boo-boo and make it go away. As mothers, its our job to make our children better, its our job to put a band-aid on a little cut, kiss it, and poof, the mom magic makes the pain go away. Diabetes, is not something that any mother can take away, we cant tell our child that they will be better soon, because they wont be. Not tomorrow, not next month, not next year, not 5 years from now. They will deal with this for the rest of their lives and us as mothers, have to live with the guilt of not being able to make it go away.

How do you answer your child who asks you “Mom, why did God do this to me? He can make it go away so wont don’t he”. Somebody, please tell me why? Because I would surely like to know what the hell the answer is. Why do our babies have to deal with this? Why does any child have to deal with any cronic disease? Why does any mother have to say Goodbye to their child who just lost their battle to cancer. None of it makes sense, why the innocents have to suffer. Maybe someday we will understand the “why” of things so until then, we will continue to try to kiss the boo-boo’s we can, and just hold our sobbing children we the kiss wont make it go away…..

Schools out…time to adjust that insulin…again…

 

Well its been awhile since Ive blogged. My mind goes a million miles an hour and I have so much to get out, but when pen hits paper, the mind goes blank. Cant seem to get the words out at times!

Its that time of year again. School is out, heat is rising and video games are in full swing. Time to adjust insulin dosage again since sitting around playing video games happens more than it should. Just when you get the insulin dosage just right and everything is going as smoothly as possible with this beast, a monkey wrench like summertime comes around. I've been noticing lately that my son’s 1/20 ratio and 80/150 correction does just hasn’t  been cutting it. I thought maybe he was getting sick but then it dawned on me…OHHHH he’s sitting on his butt for hours at a time with the only thing moving is his thumbs on the dang video game controller! Time to adjust yet again. We seem to have had a pretty good 3 months as his A1C’s was 6.9 just last week. I cringe every time we have to go get that damn A1C checked. You know what it like? Its like you back in high school taking your final exam that will determine if you graduate and you don’t think you studied good enough. In to the Dr’s office we go, finger poke, I cringe just knowing we are going to hit a 10 A1C. Sweating bullets! Dr comes in and says “your doing great, a 6.9 A1C. WHEW….we did it. But how? How did we get such a good number when I thought we had a bad 3 months? Shoot, never mind how…just take it! You feel like standing up on a table somewhere and announce how wonderful your kids numbers are! You are a Rock star and you want everyone to know it! You know, its like when your kid eats Pizza or Pasta and you cover it perfectly! Funny how the little things just thrill us!