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, May 12, 2016

Making Our Way Through the Teen Years

I've always liked to prepare ahead of time.  So, when Jess was eleven I went to the talk for teen parents at Children With Diabetes.  And, I have to admit I left a bit panicked.  The teen years sounded absolutely horrid.

Jess will be 14 in just a short time.  And, I know we have barely begun the dreaded teen years.  I won't lie and say that things are always smooth sailing.  We've had our fights.  I've wanted to pull my hair out at times.  And, I know Jess has too.  I'm not the perfect parent.  And, Jess isn't the perfect teen.

But, as Jess finishes up middle school I can't begin to describe how proud I am of her.  Middle School years for girls (and I am sure boys too) are no picnic.  The drama, the discovery of boys, the becoming a woman issues.  There have been a whole heck of a lot of changes as there are for all teen girls.

Jess entered middle school with the new feelings of wanting to hide her diabetes.  She had always been a huge public advocate, but developmentally the middle school years are all about wanting to fit it.  So, in some ways we would have been more alarmed if she had not explored these feelings.  And, she was so mature about it.  We agreed that teachers and the nurse had to know.  She wanted a small group of friends to know.  But, the other 600+ kids in the school....did they really need to know?  Of course not.  So, we met with the school and came up with ways to protect Jess's privacy.  Wonderful ideas such as having her change for gym in the nurse's office were written into her 504 plan, as well as having a code that she could discreetly use to tell teachers if she has a blood sugar issue.  The dexcom and omnipod were discreetly placed where they would never show.

And, she grew from a child to a woman as she made her way through these middle school years.  She had her first real crush, went for the first time to malls and movies without parents, joined the track team, and so many other completely normal firsts.  She lived as Jessica, a fairly typical middle school girl, who just happened to have diabetes.

We compromised during these years.  We agreed that she would use her dexcom at school to bolus for lunch.  Fingersticks during school would be rare.  It would be completely up to Jess whether she wanted to take exams with high blood sugars...she would continue to be protected by the 504, but she would be the one to decide whether a test should be delayed.  These compromises might not work for everyone, but they worked for us.  I won't lie and say I was comfortable with the fact that some days the only fingerstick blood sugars were the ones to calibrate the dex.  But, so far this has worked for us.

Today we had Jess's 504 meeting for high school.  I asked Jess if she wanted to be a part of it and she did.  I looked at her, sitting at the table with the principal, teacher, counselors,  and nurse.  Her dexcom showing clearly on her arm as she wore a tank top.  I listened as she explained that she no longer needed to change in the nurse's office for gym.  She doesn't care who knows she has diabetes, she explained.  I listened as she advocated for herself and helped form her 504 plan for high school.

Earlier this week I watched her at the endocrinologist's office.  She is confident in her ability to self-manage her diabetes.  Her A1c is hers, and hers alone.  But, I know she will not mind me saying that she continues to be "in goal."  I listened as her endocrinologist told her what an absolutely phenomenal job she is doing managing her diabetes, and that Jess makes her job easy.  And, I was impressed by the questions she asked.

And one morning this week, Jess informed me that she had woken low in the night.  She explained that she had one juice box.  "I wanted to eat way more, but I made myself have the 15 gram juice box as I didn't want to over-treat my low."  She proudly told me she started her morning with a blood sugar of 98 and was so proud she hadn't over-treated.  It seems like just yesterday she was the little girl that would never wake with a low blood sugar, even if she was 45 and covered in sweat.

I don't know what the high school years will bring.  I do know there will be huge challenges.  But, middle school is almost done.  And there have been challenges.  But, more than that there have been successess.  And, those deserve to be celebrated.

I'd be ok if she continued to want to hide her diabetes.  But, I am so incredibly proud of her for having an instagram account that instead says "Type 1 diabetic and proud."  I'd be ok if she still carefully placed her omnipod and dexcom where they would never be seen.  But, I'm relieved for her that she no longer feels she has to.

I might wish that she would never take an exam with a blood sugar in the 300's.  But, I'm proud of her for choosing to do so and still getting straight A's.

There have been times that I have wished she would manage her diabetes differently.  But, how can I not be proud of the way she has managed it, and the A1c's she herself has earned.  Gone are any feelings of a mommy report card.  I am but a member of her team now...but she is the one who has earned every excellent A1c she has had this year.

My little girl is truly no longer.  It takes my breath away when I look at pictures of her at seven when she was diagnosed.  I know so many are diagnosed so much younger, but she was still such a little girl.  Diabetes changed her childhood.  I will always hate that it took away her carefree days.  I hate that she now cannot remember well life before diabetes, when I have such incredible memories of those carefree days.  I hate that soon she will have lived life as long with diabetes as without.  But, I cannot hate who it has helped her become.  There is no arguing that diabetes has made her mature, empathetic, and resilient beyond her years.  Those are amazing gifts and will serve her well as she continues to make her way through the teen years.  And, I simply could not be more proud of her.

Thursday, February 25, 2016

A little girl no more

Posted with permission from my most fave T1D

Dear Jess,

I started and re-started this post so many times.  I rarely post now and am so careful to protect your privacy.  It is your diabetes.  But, I have to let you know how absolutely amazed and proud of you I am.

I don't recognize at all my little girl.  The one that had just started on her seventh year when her childhood was stolen.  My eyes will always water when I think about that time.  And, I will forever hate the instantaneous way that our lives were shattered.

Your diabetes was my diabetes back then.  You did so much even at the young age of 7...checking your own blood sugar.  I remember the first time you gave yourself a shot.  Your little hand shaking.  But, the management and worry were mine.

You grew up despite diabetes.  You went from this little girl to a young woman who is much taller than me.

Your diabetes changed with you.  You went from being an advocate who read to your class and spoke to large crowds about Type 1, to a middle school student who hated it and tried desperately to keep it hidden.  And, then one day I turned around and you were back to advocating...on Instagram this time.  I was shocked to see posts that stated "Proud to be T1D."

As all parents, I have tried so hard to protect you.  I've been the mama bear that has taken on anyone who I feel discriminates against you or treats you differently because of diabetes.

Today showed me such new ways how much you have grown and changed.

You had your diabetes eye exam today.  The nurse felt the need to tell you about a girl who ate candy and went blind.  She also talked with you about how she was so happy that she didn't have diabetes as she absolutely could never "do needles" or give up candy.  She told you that as long as you did what you were supposed to do and didn't do things like eat candy, you would be just fine.

As I felt my blood boil, and my mama bear instincts take over (carefully balanced by the desire not to embarrass you as I do so frequently these days,) I watched in amazement as you handled this completely inappropriate situation in your own way.

Some would say you should have patiently educated her.

But, as a nurse who works for a retinal doctor and sees people living with diabetes all day long, I will say she should know better.

You calmly asked me for your candy.  And, then ate it in front of her.  You and I know that they were actually glucose tabs, but I loved the way you even said "mom, do you have any more smarties? I'd like some more candy"  The look on the nurse's face was priceless.  But even more priceless was the look on your face when you looked around the room for cameras, waited for her to turn her back, and then quickly gave her the finger.

I know many will say I should have disciplined you.  But, instead I tried not to laugh and was not very successful.

I love that you realized the ridiculous scare tactic for what it was, and that it was mixed with a good healthy dose of ignorance.  I'm ok with the fact that you didn't patiently educate her that people living with Type 1 diabetes can actually have candy.  I love that her words did nothing more than piss you off, and that you handled it with humor, and then went on living your life... needles and all.  And, I love that her words didn't send you into a panic about going blind.  I even loved that when she asked you if you check your blood sugar you looked at her like she was insane.  And, when she told you "Oh that's good you check honey because some people don't.  What were you today when you checked?" you pulled out your dexcom and said "well I'm 95 now, would you like to see the past 24 hours?"

I know you will continue to grow and change, and we will see many more ways you process living with diabetes.  One day you may patiently educate and hopefully not give people the finger behind their backs.  But, today...at 13...I think your response was wise beyond your years.  Resilient.  Strong.  Sassy.  You are those and so much more.

And, I'm so proud to be your mom.