I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Friday, January 30, 2015

What I Wish I Knew

Two weeks before D
Living well with D
We watched home videos last weekend.  Ironically, the random one we picked was of the time right up until your diagnosis.  You looked so healthy and happy.  Your last soccer season before you were diagnosed.  Your last school concert.  Your last vacation.  It was the last year of your carefree childhood.  The last year I had the luxury of worrying about "normal childhood" things.  We had no idea the absolute devastation that lay just weeks ahead.  I looked over at you as we watched.  I wondered if you realized we were watching "before diabetes."  Do you remember those first seven years?

I wish I had known that terrible night that things would be ok.  I still remember the despair I felt.  The beginning was nothing less than terrible.  Holding you down to give shots.  Forcing you to stay on a ridiculously strict meal plan.  Mourning our loss of normal.  I hated those days.

I look at you now.  Tonight I came home late.  Exhausted from a long week with too much work and too little time.  Sleepless nights with dexcom alarms thrown in the mix.  You had made dinner---all by yourself-just to help out.  Last night you overheard me telling your dad that I was less than thrilled about going by myself to your sister's choir concert.  "I'll go with you, Mom" you said.  "I don't want you to have to go alone."  I see your compassion when talking with me about kids at school that are different or teased.  I can't help but think that diabetes helped make you such an empathetic, caring, and compassionate young lady.

You brought home straight A's this week.  You didn't delay one single test due to high blood sugars.  We've told you that you can.  You have a 504.  But, yet you didn't.  And, you still managed straight A's.  I watched you play guitar tonight.  It occurred to me that it is your third musical instrument.  And, the callouses you have from checking blood sugars are an asset to a guitar player.  I discovered a goal setting activity you did in guidance class.  When instructed to think about something you want to achieve, you state "I want to become a doctor because I get to help people."  When asked to describe whether this goal is realistic you write "Yes, because I have already learned more than most first year medical students."  Your dad and I may talk about medicine a bit too much at home, but what I didn't notice until my mom pointed it out is that there is absolutely no mention of diabetes on this two page paper.  Even when asked if there are any roadblocks or barriers that might get in the way of you achieving this goal you state that only a few people get into medical school and this might be a barrier or roadblock....but, you never say anything about diabetes.  Diabetes simply does not stop you.  I don't know if you would have been as interested in medicine if you didn't have diabetes.  I think you would have.  And, of course I don't know if medicine will truly be your calling.  You remind me so much of myself at your age.  I knew for certain that I wanted to be a doctor.  And, I would like to think that you are exactly where you would have been even without diabetes.  I truly think you are.

I remember how you used to cry and have panic attacks with every single site change.  At our first Children With Diabetes conference we asked everyone we could what we could possibly do to help.  We tried numbing cream, the buzzy bee...what seemed like a million different tactics.  And yet every third night or more our lives were paused for 30-60 minutes while we tried to console you, or while your dad and I fought with each other about the right way to do this (me..."just do it quickly so it is over with...and your dad "don't do it until she is ready"....I later realized this was because he carried his own guilt over your diagnosis.)  It was truly exhausting and terrible.  And, the other night I realized that other than the "ugh...it's site change night," there is absolutely no drama.  Sometimes we use numbing cream, and other times you tell us to forget it and just get it done.  But, there are no tears.  No panic attacks.  You can do it on your own, but still want us to do it for you.  And, that's ok.  I wish I could do it instead of you for the rest of your life.  But, you have become so strong and brave.

I remember our first vacation to an island only accessible by boat shortly after you were diagnosed.  No grocery stores, pharmacy, or doctors on the island.  I remember wanting to cancel that trip.  I was terrified.  What if you went into DKA?  What if you had a hypoglycemic seizure?  It was an amazing trip.  And, we handled everything just fine.  You didn't go into DKA, nor did you or have you ever had a seizure.  And, I look at where you have been since then.  You've hiked the Narrows at Zion...miles away from any civilization and without cell phone reception.  You've gone on boat trips to the middle of the Caribbean Sea where you've snorkeled caves and gone to deserted islands.  You've gone to the top of Pike's Peak and deep into the Grand Canyon.  All with diabetes tagging along.  But, you haven't let it stop you.  I have talked aloud as I plan for each adventure---hoping to teach you that the key is just preparing.  I watch now as I see you do the same thing.  We went back to the same island recently.  You did have ketones and we did just fine.  We are confident in our diabetes management now.  Confident that we can handle most things.  We didn't feel that way in the beginning. But, we do now.

Many roads still lay ahead.  We have the adolescent years to navigate, and I can't even yet imagine how I will cope with the transition to college.  I remember telling a dear friend that the only reason I couldn't wait for those years is that I would finally get some sleep.  I was more than a little devastated when she replied "No you won't.  You'll still wake up.  And, it is even worse because you can't go down the hall and check her and make sure she is fine."  But, I believe the bionic pancreas will be here by then.  I believe it will be ok.

I wish I had known....

diabetes would make you so compassionate and brave

diabetes would bring our family closer

diabetes would not stop you from thriving and reaching your goals

diabetes gets easier...not easy....but easier

diabetes wouldn't stop us from what we like to do best together...traveling

diabetes would lead to new passions in your dad and I's careers

diabetes would lead us to new friends...it would expand our world

diabetes would lead us to a magical conference in Orlando every July

diabetes would be why I was finally diagnosed with celiac and then I became healthier and stronger

diabetes would simply not stop you...you wouldn't let it win.

I wish I had known that although five plus years later there are still ridiculously hard days, it is ok.  You are ok.  You are more than ok.  You are thriving and I have simply never been so proud of you.