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!

381 Days and counting....

381 Days ago, our lives were turned upside down by the beast. It came in like a thief in the night and ripped apart more than just a pancreas. It ripped apart a life of "once was". It installed fear, anger, hurt, despair, depression, aggression, and darkness. It took away the innocence of a 9 year old child, the eyes of curiosity now not so curios, the amazement of fireflys, not so amazing, the joy of eating cotton candy at the zoo, now, not so tasty, the faith in the lord, not so faithful. The beast came in and destroyed a life of "once was". For 380 days, we have been taking that drink from a fire hose, breathing in and out, poking fingers, injecting insulin, crying the tears, loosing the sleep, fighting the fight and realizing that you just may be loosing. For 380 days, trying to find a glimmer of hope that some day, the life of "once was", becomes the life of  "what is". Well today, day, 381, the fear has lifted, not a lot, but alittle. The anger, ya, well, that is still here along with the hurt, but the despair, not so desperate today, day 381. Depression, aggression, and darkness, well lets say that someone has turned on a night light for us and things seem a little brighter.
The innocence of a nine year old child...gone..but the innocence of a now 10 year old has enveloped our lives again. Curiosity, amazement and strength has came back into this life of "once was". Today, yes, today, day 381, normality peaked into this house. For 380 days, the beast stole a life of a little boy who should have been outside playing in the dirt. Stole the life of a little boy who should have been riding his bike with his friends, falling down, skinning his knees, stubbing his toes, collecting water bugs, frying ants on the pavement and doing something as simple as going to a friends house without his "D" mom in tow. Today, yes today, day 381, we said NO MORE. No more stolen moments by the beast, no more living in fear that a "low" will destroy a life. We must live, he must live, he must be 10, must be a 10 year old boy, doing 10 year old boy stuff. So today, day 381, I put my heart, my soul, my life in the car, we drove to his friends house, I gave the "MOM" a drink from my fire hose of "D" info, handed over my "D" child, said, GO BE A BOY....GO LIVE...GO GET DIRTY...GO HAVE A LIFE. And for just a few hours, my son forgot he was diabetic. He forgot about the beast. I, on the other hand...had a panic attack. As I drove off, leaving my "D" child, in the hands of another mother, who does not know much of the beast, and leaving my child in the hands of HIMSELF, the beast consumed me for a bit. What are you doing? You stupid woman, you are leaving your "D" child, you are putting him at risk for.....STOP IT...GET OUT..Get out of my head you damn "D" beast. I did not leave my "D" child, I left my son at his friends house to play. Not my "D" son, just MY SON. My son, who for 380 days have lived his life with the beast, who has felt the highs and lows, who knows he body better than anyone. He was had to grow up so fast and now its time to slow down. For 380 days, he didn't just live with the beast. For 380 days, he has been learning how to just live. He has been learning how to take care of himself, how to recognize how his body feels and to recognize a change. Now, day 381, its time to take all you have learned, and go live. Go be a 10 year old boy, and go be free. You, my beautiful son, now have your wings, you have grown, your are not held hostage by the chains of insulin, pokers, test strips, you now need to fly.
It took 380 days of pain, hurt, fear, tears and struggles to have "enough", and just one moment for this "D" mom to realize, it all wasn't for nothing. All these past 380 days were training days, to get us here, to get us to the day, that my son now becomes free again, and our life of "once was", become a life of "what is". And what is it you ask? Its a life! A beautiful life of innocence once again. A life of a little boy skinning his knees and stubbing his toes......A FREE LIFE! Day 381, a new beginning.

For my little hero......"Dont you worry child"