I've been so amazingly blessed this past weekend with family surprises and loving notes from my kids. Today has been an onslaught of amazing posts on social media and text messages from friends and family near and far. I've been wished HAPPY BIRTHDAY a ba-jillion times and each and every one of them is truly wonderfully appreciated. I am loved....and loved well. And I know fully just how BLESSED I am. Plus, as the cards played out in my life I get my wedding anniversary, mother's day, and TEACHER APPRECIATION all in the same month. I'm kinda a big deal around here I guess. hahahahah.
But one question I get asked every year, makes me cringe a little. NOT because it's a poorly asked question, or a question asked in bad taste. No. Not at all. It's always delivered with appropriate cheer and done with a sense of wanting and jubilation and appropriate creative glee! It's meant and delivered with joy and love and please know that I KNOW that. But for reals....
"WHAT DID YOU GET FOR YOUR BIRTHDAY?"
*sigh* I get asked, 'what did you get for your birthday' every year. And it's a GREAT question, meant to follow-up celebrations past, and give me a chance to revel a little longer on all the outpouring of people's love on the day of my arrival to the planet. The day I made my first mark on this life.
It's a great question.
But it's not the question I WANT to answer. Not because I don't truly love and celebrate my years with my dearest loved ones....but because for every holiday I happily celebrate for myself, part of me cries inside at the lifetime of celebrations my son will have in front of him to navigate Type 1 Diabetes.
He is 7 now, and was diagnosed at age 2. Truly he remembers nothing before T1D changed the landscape of his life. I'm grateful for that small miracle. But as I look back on my own life (decades I refuse to count accurately) I grieve a bit to think that one day my son will be my age and STILL be juggling the day to day burden of managing an unmanageable condition.
Years of making sure he never leaves the house without the three major forms of glucose EVERY diabetic must safely have on them at all times. Years of birthdays spent trying to forever balance the CELEBRATION of his arrival to the planet -- and the forever burden of counting carbs in his head and judging if that slice of
celebratory cake is "worth" the high, or need for additional insulin. Is it "bolus-worthy". I can have a glass of wine with family, share a slice of cheesecake with dinner and never have a care about the long term impact to my blood sugar as I do. My son will NEVER have that luxury. LUXURY. To eat, a meal, based solely on the need to satiate hunger or feel the comfort of a full belly free from the worry of incorrect math potentially putting his sleep - or worse - his health at risk.
My birthday this year came with the great joy of being spontaneously surprised this past weekend by visits from out of town guests. It was GLORIOUS and such a memory I can never replace! It was thrilling, amazing, and exhausting in the best possible way. But tinged, for me, with a bit of sorrow too. I can spend an entire day being surprised by family and touring New York City. Eating from wherever we decided to take a rest, and shopping as we walk for miles, and not worrying about a schedule or a timeline of events or even have to prepare a bag. My son will never have that luxury. Nor will anyone he ever loves. Surprise trips, surprise outings, must forever be covered by glucose supplies and a well packed bag. Never too far from the insulin, or
the emergency sugar. Every step he takes that is beyond his normal physical exertion will require an adjustment to his insulin needs or carb calculations. Eating at restaurants will require intense math calculations in his head and food carts or spur-of-the-moment food carts and trucks will have an added element of risk as he knows that one good round of food poisoning will, WITHOUT FAIL, send him to a hospital.
I was so excited to stay up late until after midnight nearly every night and play cards and sip wine with my sisterhood of travelling crazy as we laughed til we cried. I fell into bed exhausted and rose EARLY the next morning to make sure my kids didn't disturb our sleeping house-guests. I was EXHAUSTED and still perfectly fine. My son, won't be so carefree with his rest....ever. For each hour he pushes beyond his bodies limit is one more hour his insulin needs will shift and his carb ratios will be altered and the fatigue will make the math calculations all that
much harder to perform accurately. Sleep is precious, healing, necessary, and for a T1 it is as priceless as GOLD because never will he safely sleep thru the night without Dexcom alarms or cell phone alarms or audible's that wake him,....thru the night.....to catch a dropping blood sugar. So I may have been tired from only getting 5 hours of sleep every night.....but it was five hours that was MINE and solid and uninterrupted. My son might never have that in his adult life. That lack of sleep is why I embrace my love of coffee on a deeper level....singing the praises to my Nespresso Machine's frothy love every morning as I pour a cup and thank GOD IN HEAVEN that my son made it safely through another night.
As my family boarded a plane to return home, and I prepared myself to re-start my normal week of mom chores, I had the privilege to take stock on ALL i am blessed with. To be sure, I am BLESSED beyond measure. I have a husband who works HARD to provide for our family. I have a home to keep us warm and dry, food in our bellies, clothes on our backs, and just enough extra love going around to have wonderful memories made like surprise birthday guests and impromptu trips. I even get the joy of pursuing my passions from time to time because my husband is so supportive. I write, I sing, I am one super lucky chic. But I also have not one son, but THREE of the most amazing and rambunctious boys you have ever laid eyes on. they are my joy every day. I relish every second I get with them and frankly sometimes that's a lot too. We homeschool because it fits us, and I get the privilege of seeing them learn and grow more and more each day. I see them grown and learn and I get to guide them thru learning how to live with Type 1 Diabetes too. Not a part of parenting I chose - but frankly one I proudly aspire too because surely if I did not choose to be a T1D parent, THEY did not choose to be T1D kiddos. Did you catch that....I said THEY.
I have one Type 1 Diabetic son now, but the other two have the antibodies....their a1C's are creeping up. T1 is on the horizon for them as well. I cannot, by myself, stop the progression of this condition, nor fend off the dragon that is the autoimmune attack. All I can do is inspire THEM to live BEYOND Type 1 as best as I can. WE are now a household with one Type 1 Diabetic kid, but in the future that number will very likely change to 2....or even all 3. So do you really wanna know what I want for my birthday....or mother's day.....or christmas.....or arbor day.....or Tuesday?
----->>I want a cure.<<---------