Im a day behind (lol – started this post on Wednesday – didn’t finish it and now I am 3 days behind) but for the next week I will be taking part in the “Advocating For Another Carnival 2012” via WEGO Health.
As a parent of two children with Type 1 diabetes and a third kiddo that has had some pancreas hiccups I spend a substantial amount of time advocating, teaching, sharing, and learning. Why do I do it? For the following reasons….
We all have great photos of our kids and family having fun on vacation, playing in the yard, taking their first steps, learning to ride a bike, holidays, birthdays, etc. Unlike in the magic world that Harry Potter resides our photos don’t move. The subjects in the photos stay frozen for ever. The huge grin when they open a birthday gift, the look of pride when they learn to ride a bike, even the looks of annoyance as parents make them pose for yet another scenic photo will be forever still and thus enjoyed for years to come. However, the photographs and portraits don’t really say who the person is behind the smile. Is the person in the photo healthy, kind, funny, smart, sassy, musical, athletic, etc.
Yesterday’s (Tuesday’s) prompt asked writers to “write” a portrait of those we advocate for.
Sweetstuff is a nearly thirteen year old that occasionally acts as though she is an equal with her dad and I. She is very independent – except when she isn’t. She has huge round green/blue eyes that seem to be a window to her very soul. Eyes that I want to protect with every once of my being because with diabetes retinopathy is a common complication.
Sweetstuff’s smile is wide and welcoming shared with strangers and friends alike. Photos rarely show the times her smile is upside down due to high/low blood sugars. Sweetstuff is kind to all and a loyal friend. She doesn’t judge, she doesn’t care about economics, color, race or religion; although she may ask questions about things she doesn’t know. She has a thirst for knowledge and believes that asking questions is the best way to learn.
Sweetstuff loves singing and will soon be in the String Orchestra at her middle school. If it were me I would be terrified that I wouldn’t be good enough – she sees it as an adventure (I secretly hope she chooses the Cello). She is wicked smaht at math but her spelling is not so great (she gets that from me – the poor spelling not so much the math). She worries about diabetes complications and sometimes she gets overwhelmed with all that is diabetes. She loves animals – especially cats and owls. She hopes to be an opthamologist one day. She is disappointed in herself for not having learned a sport at a younger age (seriously I think she thinks she is over-the-hill). She can be shy in large groups and even more so when meeting someone new – this is often confused with arrogance. She is confident in many of her abilities but very insecure about who she is (makes me sad).
Sugarboy is 8 and entering the third grade. He was diagnosed with Type 1 Diabetes when he was just 2 years old. He doesn’t remember his life without diabetes.
Sugarboy is loved by all who meet him. He is kind, smart, happy and his smile is infectious. He loves soccer and puppies most of all in life – Lego’s take a close third. He is a pesky little brother and a great playmate to Middles and Sweetstuff. He never fails to say good morning and good night. He is excited to be starting a new school but misses his old school terribly. He is small for his age but as brave as brave can be. He has HUGE green eyes and his brown hair is always disheveled (if he ever needs glasses he could quite possibly be mistaken for Harry Potter – yes another Potter reference – yes I’m a nerd.)
He has owned diabetes since his first day back to pre-school two weeks after his diagnosis when he entered the classroom and announced to all, “gather round friends, I have diabetes, watch me check my blood sugar.” He has never let diabetes stop him from excelling at soccer and swimming or anything else. He can check his own blood sugar, count carbs and dose insulin (via his insulin pump) in the time it takes for to hear the title sequence of Phineas and Ferb. He often sleeps with his arms curled under his head, his knees tucked up under him and his bottom sticking up in the air just like he did as an infant. Of course this sleeping position makes checking his blood sugar at 3am a bit difficult because as I try to tug an arm out from under him he seems to develop superhuman strength insisting to keep his hands hidden beneath his pillow – all while sound asleep. The boy can also down a juice box in 4 seconds flat – even while sound asleep.
My Middles does not have diabetes (right now). He is at a high risk though since he has tested positive for antibodies that are commonly present in those who’s immune system is attacking their own body. (Sweetstuff had the same antibodies two years prior to dxd.) BUT right now he does NOT have diabetes and we pray daily that the signs are wrong – meanwhile he will begin a study with TrialNet that may help delay or stop the development of Type 1 diabetes.
Middles is a textbook example of a middle child only he has it much worse than typical middle kids since both his siblings also have Type 1. He struggles with jealousy, fear and sadness. He get’s jealous of Sweetstuff and Sugarboy for all the extra attention he perceives them receiving. He is afraid he will develop diabetes and fears for his brother and sister’s safety. He is sad for them too – he hates being around for infusion set (insulin pump thing) changes and worries when his little brother has a low blood sugar. He recently shared with me how angry he is that diabetes takes up so much time and how he thinks it makes my life hard. (Lots of hugs for that one)
Middles is tall for his age – and skinny – too skinny (scares me cus he seems skinnier lately – goes back to high risk for diabetes). He, like his siblings, has huge bright eyes – only his are more blue than the other two (more like his daddy’s eyes). He has sandy brown hair that seems to always need to be cut and is always in his eyes. He has a lazy eye and slight astigmatism which requires him to wear glasses or contacts. One would think that in this day and age kids would no longer be picked on for wearing glasses but that is not the case. Kids at his old school in TX took great pleasure in teasing him for his glasses. He had begged for contacts since he was 8 years old. We gave in when he turned 10. He is great at caring for his contacts and his confidence increases when he wears them. It is sad that kids pick on differences – I blame the parents.
Middles loves skateboarding, biking and video games. He enjoys athletics but has not found the best fit yet. His depth perception is not fantastic with his lazy eye so ball handling suffers – yet this has never hampered his desire to play and always tries to improve. He is one to try anything – food, sports, thrills, and meeting new kids. He is extremely outgoing – always excited to introduce himself and get to know others. He is so very kind, generous and polite. He doesn’t utter a request without a “please” and rarely forgets to say “thank you”. He will help all who ask and wouldn’t dream of putting another down (well if you don’t count siblings).
He is destined to be a lawyer or politician for sure. He will argue with all those he feels have wronged him or another. He will insist on being heard and will not easily concede if he feels he is in the right. (This does not always go over well in the classroom environment but we are working on it.)
Well – this was likely one of my longest posts and if you made it this far you should get some sort of prize – alas I have nothing but a heartfelt “thank you” to offer. I started this blog to sort out my own head. I am grateful for this prompt because it made me sit and give thanks for my wonderful children who teach me as much as I them.