What if?

     What if?                                                                                                                What if?

What if I could of done just one thing differently? What if there was something that I could of done as her mom, to stop her from getting Type 1 diabetes? I have pondered this question over and over in my head a million times. 

God knows I have heard a lot of different comments accusing me of causing this. "You must of fed her too much sugar as a baby!" "You had gestational diabetes so it had to come from you!" "Did you take her around anyone with Type1 diabetes??!!" "That's why different races shouldn't mix together, diseases are on the rise!" and the one I just really love.."Wow, you must of really made God angry"!

As the parent of any child, d or not, don't we feel guilty enough about everything that happens to our children? Even if my son forgets his homework paper or football helmet (he is a teenager), I chastise myself for not reminding him. If my daughter falls down and hurts herself while playing, I think, maybe I should not have let her do that. One year she was playing the piano for her older brother for his birthday. A crystal picture frame somehow fell and sliced her forearm wide open, resulting in an immediate trip to the emergency room followed by stitches. Why did I place that frame there??? Everything that goes wrong is my fault. Society always blames the parents and it seems to be no different when it comes to Type 1 diabetes.

Perhaps one day they will find a cure for Type1 diabetes. Perhaps one day they will find out that if I would of kept my daughter in a giant plastic bubble inside a sterilized room, eating only organically grown food, never feeling the rain on her face, letting her run and play with her friends, never feeling the sand between her toes, never letting her experience the pride she felt when she learned to ride a bike all by herself, never experiencing "life", then perhaps she would not have gotten Type 1 diabetes. 

You can read all the facts about Type 1 diabetes, NONE of the accusations I have heard from people hold any truths. "Fed her too much sugar", my daughter ate healthier that most kids I have ever known! Besides, newborns get Type 1 diabetes! "Gestational diabetes"...umm no, it was my pancreas not working properly! Once again, then why don't all children born to moms that have gestational diabetes get diabetes!  "Took her around another Type 1 person"......if Type 1 was contagious, wouldn't we have already been quarantined and wouldn't everyone around us be affected??! "Different races mixing together"....as far as I have seen, Type 1 diabetes does not discriminate. It doesn't care if you are "mixed", white, black, Hispanic, Asian, or probably from Mars. If you have a pancreas, then it is possible to get Type 1 diabetes. My favorite "God must of been really mad at you!". I am not saying that God doesn't have all rights to get mad at me, I am not perfect, I mess up. BUT once again, I think the children of everyone I have met (and have not met) would have Type 1 diabetes if this was the case. None of us are perfect, none of us. 

My daughter is a child with Type 1 diabetes. She is not a genetic T1. Her father and I don't have it, her grandparents don't have it, their parents didn't have it, and so on and so forth. Even our Endo believes that for whatever reason, it was a virus. Perhaps from the flu, a cold, an environmental situation. No one knows, perhaps no one will ever know for certain.

The one thing that I know for sure however, is that if I had to take my chances with Type 1 diabetes or keeping her in a plastic bubble, I would choose to take that chance and let her live. I would let her giggle and play, run and laugh, scrape her knees, fall off her bike, love her dog, her friends, feel the ocean breeze on her face, taste the saltiness in the air..... I would let her "live", I would let her be a happy little girl. That is one thing you can accuse me of, one thing that I am totally guilty of... and there are never any "what ifs" when it comes to that.

Vampires at night

So here I am looking at a clock that says 1:30AM because the midnight check of my daughter's blood glucose numbers didn't sit well with me. At 12:30pm, her number was 95. Well ok, 95 is a great number if it is before lunch, before dinner, when she awakes in the morning....but not at midnight. There is a fear that all of us have, that all of deal with when we have children with T1 diabetes. We don't like talking about it. Most of us probably didn't even know such a thing existed until we had a child of our own with this disease.

During the day we seem to be able to handle anything that concerns T1. I know that no one wants to talk about this but I know that this is a reality of all parents that have a child with T1. There are inspirational blogs which I love but I know that I am not the only parent that still cries after 2 1/2 years since her diagnosis and the only parent with nighttime fears. 

As nighttime approaches, as calm as we try to remain, inside our heads we are full of the "what ifs". When night comes and bedtime approaches, you would think that Vampires are stalking our child, waiting to take that fatal bite and take her away from us forever. It may not be a vampire (a little garlic would stop him!!) but instead it is what is known as DIB. DIB (Dead in Bed) is what can happen to a T1. For some unknown reason, during their sleep, their body can produce insulin. Producing insulin is a very good thing UNLESS you have already administered several units of insulin into their bodies. Excessive insulin can cause the T1 to go into hypoglycemia (an extremely low blood glucose reading). This is turn can cause the heart to go haywire, to not function properly and thus result in a child never waking up again (there are a lot of medical facts you can also look up about DIB but this is my short non medical knowledge). 

So being the stressed out, fearful mom that I am, I wait to recheck. Waiting to see if I have a number that will continue to drop or a number that will continue to rise. I know that I have been told that DIB occurs rapidly and more that likely, even with checking her numbers throughout the night, I could not prevent such a thing from happening. As a mom, I don't accept this information. I won't, I can't. Not to mention that I have checked and found many nights when Jasmine's numbers had dropped to dangerous lows, requiring me to wake her up and get some carbs into her little sleepy body. So like I said, I won't accept that I can not do anything to try and help keep my daughter as safe as I can while she sleeps.

An hour later, Jasmine's meter reads 123. Much better for her to get through the night. I calculate the hours and pray that this number holds and she is safe. At 5AM, I awake and rush in to check her again. Meter reads 134. I say a prayer of thanks, that once again we have made it through the night. 

To my daughter, I am a normal happy mom that handles her diabetes care like a champ. No sad faces, no stressed out mom, just her mom that loves her and is taking care of her. In return, I have a happy little 8 year old that bounces off to school with a smile on her face and a song in her heart. She takes diabetes as it comes, fixing the highs, fixing the lows, adjusting to this way of life that will continue for her until a cure is finally found. She is the real champ, my hero. So another day, filled with giggles and joy, homework and fun. We read our bedtime stories, says our prayers and off to sleep she goes. Never realizing that this crazy neurotic mom is keeping watch by her bedside, wearing a lot of garlic (just in case that vampire does show up!) and always praying and checking and doing my best to keep her safe throughout the night. 

T1 Dinosaurs

Photo taken at Norris Houk by Paticia Kodet created 1988.

     I have stopped blogging for quite some time. I read all the other posts from these articulate and lovely D parent bloggers and think that I have nothing witty, enlightening, humorous or educational to contribute to this vast world of the DOC (Diabetes Online Community). Then I think that I need to do this for me, for my sanity. To reflect how things have changed or stayed the same throughout the years. Mostly I need to do this for Jasmine, the light of my world to show her how very much I love her and that I will never stop hoping, praying, "walking" and fighting  for a cure.

     In the DOC, I read a lot about "pumpers". It seems like everyone has a pump or other device to help make life a little easier (if there is such a thing) or better in controlling their children's blood glucose levels. Their children seem to eat whatever they want, whenever they want. No schedules, no need to say no, ever. I see T1 children eating things that I am not sure I would want my non-T1 son to eat! Please do not be offended if you know someone with a pump or if your child has a pump. I am not saying that all parents of pumpers are like this and I have many many friends that have their children on a pump or other device. If having a pump or other device works for you or them, then that is fantastic! However, just because this family chooses to still use bottles of insulin and needles, stay on a stricter schedule and tighter carbohydrate count, then that doesn't make me a bad mom either (which I have heard more than once!).

     Since Jasmine was dx in January of 2010, I have had people tell me that a pump is much better for her. Her numbers would be better, her life would be better, my life would be better. I try to explain to them that my daughter does not want a pump or device attached to her little body (she wore a practice pump and hated every minute of it!). Oh my!!! The negative and nasty looks of disgust that I receive from them! They firmly say to me, "You are the mother, you are the one to make the right decisions! This would be better for her and you need to make her get one! She doesn't have a choice!".

      Choice? She doesn't have a choice?! This is about the only choice that she does have in all of this! When T1 came along it took my daughter's choice away to have a normal carefree childhood. It took her choice away to be just a little 5 year old girl having fun in Kindergarten without any worries. It has also taken her choice away in 1st, 2nd and now 3rd grade, to just be able to go to school, play, take a test or attend an assembly without ending up in the office because her blood glucose numbers have dropped to a dangerous low. It has taken her choice away to be able to have a play date at a friend's home. It has taken her choice away to just have a cookie or some pasta or any kind of food without weighing, measuring and calculating each and every carbohydrate involved. It has taken her choice away to attend school when there is a special activity going on because she is at her Endocrinologist's office, receiving her diabetes check up, having blood drawn and lab tests done. It has taken away her right to sleep through the night without being awakened, forced to eat or drink something because her levels are too low. It has taken away her ability to jump in the car to go shopping or anywhere without first making certain that a bag is packed with her meter, her test strips, her Glucagon emergency kit, her insulin, needles, alcohol wipes and quick acting sugar in case her numbers start to drop. It has taken her choice away to prick her tiny little fingers 4+ times a day to test her blood glucose levels. It has taken away her choice to just be a kid without this vast knowledge of knowing the signs of a high or a low blood sugar, information of what diabetes can do to her kidneys, her heart, her vision, her LIFE, unless she is aware and takes care of herself. T1 diabetes took her choice away to be herself, just a bubbly happy 8 year old without it raising it's ugly head and reminding her that she is different and that she must never forget that. Because if she does, her life would be in danger. By the way, having a pump or other device attached to her body would not change any of the choices above.

     So the next time, I hear, "It's not HER choice.", be prepared for this mom's fury. This is her body, her choice, her right, her decision to keep the schedule we live by and to receive the shots she endures. Her choice if she wants a pump or another device attached to her body or not. Her choice that makes her happier living with this lifelong disease. And if one day, she decides that she wants a pump, then that is HER choice too. Be it injections, pumps or other devices, we all want the same outcome, a healthy, happy child.  So please stop making those of us that still use injections feel like dinosaurs, that we are not doing the best we can do or that we don't care about our T1 child as much as parents of pumpers do.....unless you want a T-Rex mama to rumble with!!!