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.

Thursday, October 15, 2015

Six Years

Six Years living well with T1D!
Six years, and look how far you have come.  I would be lying if I didn't acknowledge the sadness that this day still brings to me.  I will forever hate that you must live with this, and will forever remember you at age seven on that day your carefree childhood was stolen.

I don't write often anymore.  This is every day becoming more "your diabetes."  And, while of course it always has been, this is becoming more evident every day.  And, it is yours to share with the world, or to keep to yourself.

But, I need you and the world to know that you simply amaze me.  I wish I could have known on that day you were diagnosed what today would look like.

You are happy (as happy as a teen girl can be) and healthy.  You are strong, smart, and funny.  You have met people who have become dear friends because of diabetes.  And, you have kept your very best friend who knew you "before" in spite of diabetes.

Gone is the small child who screamed and cried before finger pricks, injections, and site changes.  Here is the young woman who does those same site changes herself.

Gone is the little girl who with every single candle did not hesitate before she blew it out to tell me that she wished so desperately for a cure.  Here is the resilient teen who still wants that cure, but often has to think of a wish before she blows the candle out.

Gone are the days that I alone must measure every single morsel you that you put in your mouth.  Here are the days where before I can even start, you have often measured your carbs yourself (and bolused!)

Gone are the days where I sent you to school and held my breath until you came home.  Here are the days where I only have a passing thought as to what your blood sugar may be.  "I know how to take care of my diabetes" you tell me.  And you do.

And, this week when I silently congratulated myself when looking at your fasting sugar for making the right decision to do a temp basal when your dex alarmed in the middle of the night, you tell me at breakfast "I woke up low last night and ate glucose tabs."  You woke up low (a HUGE milestone) and you handled it on your own without me even knowing.  Did I mention you simply amaze me?

Being a teen girl with diabetes is no easy feat.  I won't lie and say every day is smooth.  I would be trying to fool everyone if I said we've got this down pat.  And, there are still days when we all hate this.  The highs, the lows, the sheer work involved every single day.  Being different as a teen.  It is still so hard, the worry is still there, and the wish for better technology and a cure.  And, as a mom the new journey of watching something that I have carried for you for so long now become yours to carry.  I wish that I could continue to carry this burden for you forever, but yet I am so proud of you for how well you carry it yourself.

But, I want you to know that I will always be here.  And, you never have to carry this load alone. You will always have Team Jessica behind you.  But, whereas I have been that captain so far....you are now driving the helm.  And, you make an incredible captain.

Wednesday, June 24, 2015

A Guilty Confession

Dear Dr. Jen and the rest of the amazing staff at Jess's diabetes camp:

After years of us encouraging her, Jess suddenly announced less than 3 months ago that she was going to diabetes camp this year.

I had gotten used to the idea of her not going.  It had almost turned into a joke, where we would ask her if she wanted to go to diabetes camp this summer just to hear her screams of protest that she absolutely would not.  "Friends For Life" is my diabetes camp she would yell.  And, we had to agree...Friends For Life is absolutely amazing.

But, then she decided to go.

And, I was scared shitless.  There has not been a single hour in over 5 years that I haven't had thoughts of her diabetes, or been aware of her numbers.  For as much as I love Dexcom Share, I now know if she is high or low at school, whereas before I wouldn't hear about it until she got home.  It makes the diabetes even more constant.  On a recent first time getaway weekend since diagnosis, her dad and I still followed along giving advice as we watched the Dexcom share.  It was wonderful to finally get away, but I still woke in the middle of the night to check the dexcom.

And, I don't mean to wake.  But, like many parents I am terrified of nighttime.  I know "dead in bed" is incredibly rare.  But, I do not know how I would survive if it occurred.  And, knowing that more than once we have found our sweet girl covered in sweat with a blood sugar of 42 terrifies us.  So, I don't know that I ever sleep soundly...always listening for the alarm, just as when they were babies I listened for their cry.

So I was terrified to turn over her care to someone else.  Would they watch her like I do at night?  Would they keep her safe?  She can 100% care for herself during the day, and I am thankful and proud at how much she is able to self-manage.  I don't worry about her at school, or with sitters.  But, at night as she peacefully sleeps she cannot protect herself.  I am assured by her endocrinologist that there will come a time when she will wake from lows.  But, it has only happened one time so far.

So, as the drop off day approached, I was filled with nerves.

But, then I met with you, Dr. Jen.  I know you are not an endocrinologist. You had never seen a dexcom.  There is an endocrinologist at camp the whole time, but every cabin also has a physician of some specialty or another who sleeps with the children.  And, Jessica's cabin, like the others, not only had a physician but also 4 counselors and a dietician.  And, you are the physician who would sleep in the bed across from Jess.

You were kind.  So kind.  You listened carefully to our fears regarding nighttime lows...taking careful notes.  You listed to the explanation carefully of what to do if the dexcom alarmed and how to calibrate it.  You nodded understandably when I told you we had changed her nighttime settings so that a bolus wouldn't be given if she was under 160 (as opposed to 120 which is what we do at home.)  You made both myself and her dad completely at ease.

And, so we left her.  And, I felt a weight lift.  Her dad said to me after 24 hours "I normally feel like I am under water, but now feel as though I am swimming with my head above."  We both guiltily talked to each other about how we hadn't realized how much work went into managing Jess's diabetes until we had 24 hours without knowing anything about her care.  We were grateful no phones or communication are allowed.  We talked about how thankful we were for sleep....wonderful, deep sleep.  We talked about how ridiculous it was that her cabin of 10 girls had 4 counselors, a dietician, and a physician and yet parents are normally completely on their own in caring for their child.  We talked about how we both feel that parents of kids with chronic diseases need more support.  We tried not to think jealously of parents with healthy kids who don't know the burden we and others live with.  We tried not to feel guilty that we are enjoying this break, and worried that others will judge us for admitting it.

But, we also talked about how we wouldn't trade Jessica for the world.  How we would gladly care for her forever, and hate the burden she will live with.  And, we reminded ourselves of the beautiful people her T1D has led us to.

So, Dear Dr. Jen...thank you for giving us our first real break in over 5 years.  Our work week has been crazy and yet it has still felt like a complete break.  We are forever grateful.  We know Jess is safe.  And, we suspect she is having the time of her life among so many other broken pancreases.  Because, as she often tells us, neither myself nor her dad knows what it is like to be a kid with diabetes (her dad was diagnosed at almost 18.)  We hope in some ways it feels like a break for her too.  We know how much she hates feeling different all the time.

So, please continue to keep her safe for the next 48 hours.  We can't wait to see her and hear about her adventures.

And, Dr. Jen and all the staff...thank you for choosing to do this with a week of your summer.  I'm pretty darn certain this may all be volunteer work.  You are giving many tired parents the most amazing gift.  God bless you all.

P.S.  Next summer we are going to be smart and take some vacation days while she is at diabetes camp!

Friday, March 13, 2015

Two Plus Two Does Not Equal Four in Diabetes

I'm ready to throw my hands up in the air and scream this week.  Oh, diabetes, I am used to your tricks by now.  But, that doesn't mean I like them.  Where else can I put in so much work and at the end of the week feel like I have accomplished nothing?

I was warned about the puberty hormones and blood sugars.  I knew it would be more challenging.  But, I thought there would be some pattern.  I love problems and finding solutions.  I thrive at being analytical.  I mean I kicked butt on the analytical portion of the GRE's during the brief time I thought about going to grad school.  But, there is no pattern here.  There is no mathematical answer to your behavior this week.

One night you are high.  I adjust the rates by the smallest amount possible and keep all other variables the same.  The next night you are low.

Yesterday morning you had lows in the 60's at school.  I adjusted the rates by the smallest amount possible and gave you a low carb (10 grams) breakfast...this morning you are hanging out all morning close to 350.  Mathematically there is absolutely no way this makes sense.  And, there is no in between basal to adjust to.

We saw your diabetes provider for your routine visit Monday.  She adjusted everything.  The next 48 hours your sugars were worse then before we even went to the visit.

I know we will get back on track.  Just like I know some weeks diabetes just does what it wants.  It could be hormones, stress, the wind...who knows what is affecting your numbers this week.  But, I know it will pass.  We can manage this and we will.

What I struggle with is how you feel.  You feel horrible when you are high.  You don't have a good day.  You can't focus in school.  You hate feeling sluggish and cranky.  And, feeling low isn't any better.  And, you are frustrated.  You don't think we will get things back on track.  You tell me you just want a break from the highs and lows and work...just for one day.

"I've got this," I tell you. "We can do this."  I reassure you that we will get your sugars back in goal again soon.  I tell you again that we are a team.  We will always be a team.  But, God do I wish I could just take this for you.  I would gladly take the highs, the lows, all the work to just give you a break.  And, I can't.  I can give up sleep and at least give you that break.  But, I can't take it from you during the day.

We've been here before.  And because we've been here before I also know we'll be back to smoother sailing soon.  Maybe this weekend we'll play smash the Omnipod.  I think I'll write the word "diabetes" on every used pod.  Let's see who wins this weekend, Diabetes.

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.