TYPE 1 DIABETES
1 year anniversary
A BOWL FULL OF PERSPECTIVE
this bowl has 150 syringes in it each one was a shot filled
with insulin my son has this many shots each & every month
when i am having a hard day…running late etc….i think about this bowl & remember
how grateful i am…for my son…for his health & for all i have learned this past year…..
(please remember i am only a mother – with no formal medical training or knowledge…
all i know has been learned in the field so to say & i just my point of view from our personal
journey as a family…if you or someone you know has a child with TYPE 1 DIABETES
please consult a doctor for medical professional for information & help & treatment)
so this is what the “old normal” looked like…our life before DIABETES….
soooooo….one year ago today my sweet SON was whisked in an ambulance to the hospital & admitted to the ICU where doctors told us he had TYPE 1 DIABETES…we have somehow inexplicably made it through the year…truth be told much of this year has been rather surreal…through both the good times & the hard days i have to remind myself that this is actually happening…he has JUVENILE DIABETES & there is no cure…i wanted to honor my son & his journey by celebrating his 1 year diagnosis anniversary…i know i know, that sounds so strange to “celebrate” his condition….but i want to celebrate his life & this whether we like it or not (ok we don’t like it at all) DIABETES is part of his life…& i am so grateful he is here…blessings come cloaked in the most unusual packages…so here it goes..a bit of of our year & journey as a family as we learn to care for his health & find a new normal…
INHALE – EXHALE – REPEAT
1st of all ever since we were in the hospital the nurses & doctors & everyone we encountered would use this phrase “new normal”…i think they thought it was somehow comforting…i’d like to share here & now that i am not fond of the phrase at all…after a full year of finger pricks, blood & shots there is nothing “new” or “normal” about it…it is unnatural to constantly be gathering bits of your child’s blood to check & see if he is ok…& same goes for giving your child a shot every time he eats & every night before bed…so there, that’s how i feel about that…however, i will humbly admit that we are getting used to this…my son doesn’t cry & struggle every time he needs a shot, so that’s good…& i have gotten soooo good at giving shots i secretly think of myself as a nurse (no disrespect to actual nurses)…& my husband & i sleep through the nights most nights now…when our son 1st got out of the hospital, it was a bit like having a newborn…we got up all the time at night to check & see if he was breathing & we’d poke his finger & check his blood too to be sure he was ok at night…now we just check him at night once a week…i suppose we are actually used to DIABETES…& after reflecting i will begrudgingly admit we do have a “new normal” in our home…i think is the phrase “new normal” sounds so cheery & cute…and there is nothing cute about this bowl full of perspective….
but my sweet boy IS oh so cute – we have made through this past year by making some personal choices that really helped us navigate the intensity of what was happening with our son & truly with our whole family…within days of his diagnosis it was evident that HE did not have TYPE 1 DIABETES but that WE did…what i mean is that my husband & i decided to implement many of the necessary lifestyle & diet changes not just for him but for all of us…(i’d like to interject a side note here – we were already EXTREMELY healthy as a family – i am an organic mama & all my children have been raised on vegetables & healthy food & my husband was a professional athlete & he has instilled a genuine love of sports & athletics in all our children –TYPE 1 DIABETES is an autoimmune disease – it was not brought on by any dietary or lifestyle choices we made – it was just bad luck to say the least)…ummm ok, where was i?? so WE as a family had DIABETES…& that meant a few simple things…NO JUICE…now the juice we normally had in the house was fresh squeezed OJ or organic apple juice, they could have after exercising or sometimes with breakfast – no big deal right?? WRONG – juice has so much sugar in it & our son could no longer drink it, as it could send his blood sugar up too high too fast, in fact the only juice he would be able to have would be a small juice box (exactly 15 carbs) that would be given only if he had a blood sugar of 70 or below…so “juice” was now “medicine” for him…so NO JUICE for anyone, because how much would is suck to get a shot before you eat, then site down & watch everyone drink juice that you couldn’t have…so that was that…next up…our son had an intense fear of shots before he was diagnosed, so the realization that he would need 4-5 shots every day was really hard for him to comprehend…so he (quite cleverly) came up with his own language/words to minimize his fear…basically anytime someone said the word “SHOT” he would feel stressed…so “time for your shot” was an anxiety producing phrase…he decided to call it the “S-WORD” (again so clever in my opinion – S.H.O.T. is so a four letter word)…he referred to his insulin as his “POWER SOURCE”…he pretty much molded the scary words into words he could tolerate…all of us honored his word preferences & his little sister would be sure to let anyone know do not say “SHOT’ in front of her brother…i loved it & still do…his anxiety levels have greatly decreased over this year & he can now handle hearing the word shot from time to time but for me it will always be the S-WORD….in another effort towards solidarity for our son’s diagnosis, we all at one time or another let HIM prick OUR fingers & test our blood sugar…he really loved this…i was most proud of his youngest sister (just 5 at the time of his diagnosis) for she was very worried about pricking her finger…she tried several times over many months & always backed out at the last minute…then one day out of the blue she marched into our room and announced she wanted to check her blood sugar & she held out her finger..we swabbed it with alcohol & pricked it & checked her number, she gave me a sly smile & said that didn’t even hurt that much…her brother laughed…it’s moments like that, so bizarre & yet so sweet that keep me going…we have somehow inexplicably “normalized” pricking our fingers & checking our blood…i think it is that we are still US, even though we have been turned a bit upside down…DIABETES is a bit like having an uninvited stranger move into your home & needs attention all the time & goes everywhere with you…it is a major drag…. the hardest DIABETES related obstacle i faced as a mother this year was HOLIDAYS & his BIRTHDAY…i decided nothing would be different…meaning we were gonna go trick or treating on HALLOWEEN santa was definitely stopping by our house for CHRISTMAS & i was gonna make my son a fabulous cake for his birthday….
now before anyone starts freaking out, let me explain…i think most holidays & birthdays are about the EXPERIENCE not the candy or sweets…i wanted to be sure not to deprive him of the experiences of holidays & celebrations…truth be told we are pretty strict about sweets anyway…we always took the kids candy when we got home after trick or treating…they could dump out their bags & organize it into piles, then they could pick 2 small pieces & eat them after dinner…so that’s what we did again…only now we are carefully counting the carbs & making sure he has enough insulin for him to have that treat…& anyone who knows me knows i like to throw my bambinos cool BIRTHDAYS (this may or may not be connected to a bit of guilt i have for working so much)…anyhow, i called my son’s diabetes team (yup its a team, doctors, nutritionist, counsellors, nurses etc) & asked everyone’s advice on birthday cake…the final analysis & concesus was i could make a cake with a substitute sweetener (which would be a few less carbs) but i don’t like fake sweetners…so i made a regular cake…a BIG cool airplane cake…it took hours & i had lots of fun decorating it…my son kept wandering into the kitchen to keep tabs on my progress…we debated which was the coolest plane & so on…then his friends came…the played with abandon in the back yard…then they sat together & ate plates of salad & carrots, strawberries & chicken…a healthy robust meal for growing boys…the best moment was when my son & i filled his plate, counted & discussed the amount of carbs & insulin he would need (we always talk through it, even if i know what he needs i want him to be connected to the decisions regarding maintaining his health)…anyhow, between joking with his friends & picking his food we somehow checked his blood & gave hime his S-WORD & no one batter an eye or paused in the boyhood banter…then we came into the house to light candles & eat cake…we laughed, i of course made them all wait so i could take photographs….we sang & he blew out the candles…i passed cake to his friends & put a small slice on a plate for him…he looked at me & said mom i really don’t feel like eating cake, but can i have 2 of the airplanes…ummm yes…you see he somehow instinctually has been rejecting unhealthy foods, in a way he didn’t before his diagnosis…i let him pick out two planes & he had a couple of dried apricots instead (i had given him enough insulin for the cake but he didn’t eat it, so he needed some extra carbs to make sure his ratio was correct)…the point is we had a year full of BEAUTIFUL celebrations & EXPERIENCES..a year full of blood drops & S-WORDS…& we did it together, as a family, hand in hand…heart to heart….& that is all that truly matters….
…last night before he went to bed i asked him two questions…
1st i asked “what is the worst thing about DIABETES?”
he replied (rather incredulously) “the shots”
2nd i asked “what is the best thing about DIABETES?”
he replied (with a bit of a giggle) “no-one messes with your food”
i laughed & kissed him and realized how we are still so much the same…
his sly wit is intact & our rapport is rich with our shared history…in contrast
to my initial judgement we actually are beginning to create a “new normal”…
most of all i am amazed by how strong & brave my son is…
he is certainly been able to handle all of the changes in his
young life better than i am…a brave sweet child…xoxo
thank you to KIRSTEN ELLIS for taking the sweet portraits of our family