A Date I Can't Forget

August 4, 2009


One year ago. On that day I was told that my then 7 year old daughter Taylar has type 1 diabetes.


One year ago today...


I felt like I was outside of my own body as I listened to my daughter cry and yell "I want to go home!" while a nurse put an IV in her small arm.


I watched with a queasy stomach and fear of needles while my daughter received numerous insulin shots every few hours that doctors said would lower her 700+ blood sugar level.


I watched Taylar while she slept in her hospital bed and finally let myself cry about her lifelong diagnosis.


I learned words like hypoglycemia, autoimmune, hyperglycemia, ketoacidosis, insulin, endocrinologist, glucagon, humalog, NPH, glucometer, and hemoglobin a1c.


I remember being gently reprimanded for letting Taylar eat a snack that I didn't realize should have been saved for her next snack time, two hours later.


As I lay in the darkness of the hospital I pictured Taylar going to college and calling home saying she forgot her medicine and how frantic I would be. I pictured her wedding day and made a mental note that she would need a short sleeved dress for shots, and thought of how much I will worry about her health if she and her husband had a baby. Suddenly, although she was only 7, her life flashed before me knowing it would be different now.


I took carb counting classes and a lot of other training sessions that completely exhausted me.


I didn't eat.


I didn't sleep.


I didn't know how I was going to handle all of this. I couldn't help but focus on the foreverness of this disease.


One year ago...


I fought off the nausea that was rising in my stomach and drew up a needle full of insulin and injected it into Taylar's arm knowing I would have to do that every single day, multiple times per day if I wanted her to be healthy.


I began to hate math even more than I did in school. So THIS is what they meant by saying, "You may need this math some day."


I reluctantly cleared out a kitchen cabinet and filled it with diabetes supplies like syringes, alcohol swabs, insulin, glucose tabs, lancets, lancing devices, blood glucose meters, blood glucose test strips, bandaids, ketone blood strips, ketostix, the ever-feared glucagon, a few log books, Calorie King, lists of important phone numbers... and anything else I may have forgotten to mention.


I began to face type one diabetes head on without an opportunity to ever, ever stop.


I cried often. I was hurting.


One year ago our lives changed.


----fast forward----


August 4, 2010


In some ways it seems like this last year has flown by but at the same time I feel like I've been doing this diabetes thing forever. It's a strange feeling. And now that it is one year, what do we do? Celebrate it? Ignore it? It's a weird day.


Now that I am in a better place emotionally and mentally, I can look back at those first few weeks I can see how far we have all come. I eventually got over my sick stomach when giving Taylar shots and I found a good calculator to help with calculating carbs and insulin! I try to not think of the foreverness.... but on bad days it's hard not to. We have participated in one JDRF "walk to cure" and I am on the walk committee for the next one. I am trying to educate people and raise awareness about type one diabetes by manning a JDRF tent at a local community event in September. Yes, I have come a long way. But you know what? It's not really about me. Let's talk about Taylar here.


This girl is amazing. The daily routine that she has put up with for a year astounds me. She is just so brave and strong and amazing and happy and....She inspires me! I could go on! She has also inspired others as well. Her nurse used Taylar as a "model" for a young girl deciding if she should go on a pump or not. Taylar sat in on their appointment and answered questions the girl and her mom had like a professional. When the appointment was over and the door was closing I heard the girl say, "I want that pump Mom."


 I received an email from a friend of mine, sent to me, but addressed to Taylar, about two months ago. Her son was diagnosed with type 1 about four years ago and absolutely refuses to talk about using an insulin pump. In this email my friend went on to tell me that because of seeing how brave Taylar and how she is handling her diabetes, it encouraged her to talk more with her son about using a pump. She used Taylar as an example and actually thanked Taylar! Just for being herself. Oh, his pump start date is in 5 days.......




Not every day in the life of diabetes is a good one, but nine times out of ten, my girl doesn't complain. I don't know how she does it. I am truly blessed.  It doesn't mean that we don't have bad days or that I don't cry anymore.  I feel safe here to say that I still do sometimes.  The difference is that I now know better how to handle things.  I can count carbs.  I know what numbers mean and how to calculate them.  I can draw up a syringe and give injections if I have to (although I'm sure glad Taylar's pump does this part for me now). I have the confidence now to do it.  I can do this.  I never thought I would say that but here I am one year later actually starting to believe it's true.

Good Place

Okay, I admit that I think about diabetes A LOT and worry about Taylar A LOT especially with all these summer activities she has been going to.  But overall, I feel like I am in a good spot with this diabetic life.  (I can't believe I just typed that.)  Taylar's numbers have been pretty good besides the occasional nasty high or (less frequent) low.  Her A1C, although not perfect, was down 4 points since last time, and we have just been enjoying the summer.  Ice cream treats and all! 

I truly believe it is the grace of God that has put me in this place and I praise Him for that.  I think that is why there haven't been any posts from me here!  I've actually been enjoying life a little!  It's been a year since Taylar's diagnosis.  Well, one week from today will be one year.  We have come a long way and although it still is a daily battle, I feel like I've learned to handle what comes rather than react and play the blame game.

In this year, I've learned that diabetes is a big, fat, scary monster that will always do what it wants to do.  I do my best to control it, but I've realized that this monster is going to put its foot down no matter how hard I try to beat it.  It will probably always one-up me but I'm learning to accept that and educate myself further so that maybe I can at least tame this monster. 

As for Taylar... oh my goodness, I could not be any prouder of her if I tried.  She seriously has turned into a rock star at managing her diabetes.  She has been to many church functions, friend's houses, and even a summer school cooking class.  In each situation, with little or no guidance, she has been absolutely amazing at managing and monitoring herself.  Let me remind you, she just turned eight in May!  I don't know if it's the OmniPod that is helping her, but she truly has grown in this past year and has inspired me. 

Team Sweet T's Walk Video for 2010

I have been working on our "Walk to Cure Diabetes" video for this year's JDRF walk in October.  This is my first attempt at doing anything like this!   Check it out:
 

Highs

Talk about blog slacker.  Oh well, it's summertime.  I've already been enjoying it, believe me!  I do pop onto facebook for updates but I haven't made the time for my blog.  As I sit here tonight there is a constant drum of firecrackers exploding outside.  I'm surprised the girls are staying asleep!  Speaking of the girls, they have been so wonderful lately.  I know that Taylar is enjoying being home from school and Carissa is thrilled to have her big sister to play with.  I'm just hoping that I'm lucky enough for it to last for the whole summer.

On the diabetes side of things, Taylar has been on the OmniPod for just under two months now.  After a rocky start things definitely evened out and got much better.  But you know how it is, that didn't last long as it is still a daily battle.  Today has been down right awful!  I should have known when she woke up at 206.  I don't know how many corrections for highs Taylar has gotten today.  I just don't get it... and actually don't feel like talking about it.  But obviously something made me hang out here at my blog.  Well, at least a little venting is better than none. 

Taylar's going to bed number tonight was 232.  Taylar looks at me and says, "Mom, I wish I could go down my throat, take my pancreas out and punch it!"

I was all for it.  Hey, maybe it would make it start working again. *sigh*

Tomorrow will be another day.  A better day......I hope.

Happy 4th of July

------------------------
Update since last night's post.

When I went up to check Taylar after all those highs ALL day, she was 51 at midnight!  I have no explanation.  I could have used a "Duck Diabetes" shirt today.  Ugh!

Just what the Doctor Ordered

Shortly after Taylar was diagnosed I craved to have someone to talk to and who could relate with me. I wanted to talk with another parent who goes through the same daily struggles as I do.  I had reached out to a local organization that helps families in our situation in need of resources or finances.  I told the lady that there should be a diabetes support group.  She went through her files and made up a list of her type 1 diabetes clients, asked their permission to share emails, and sent out a group email with everyone's information on it. 

The email sat there in my inbox, and everyone else's I suppose, for weeks.  After a rough d-day, I  finally bit the bullet and wrote a group email to those on the contact list introducing myself and my connection with diabetes.  For those of you who know me I'm pretty shy so I was quite proud of myself for taking the first step.  After all, I was the one who asked for the group in the first place.

Sure enough people replied, telling their own stories and thanking me for being the first one to speak up.  There was one lady in particular who also emailed me separately from the group about possibly wanting to get together because her daughter is only a year older than Taylar.  I mentioned I'm kinda shy right? 

Well, long story short, last night we got together.  I invited my friend to go with me along with her daughter who was diagnosed a year ago and goes to Taylar's school.  Us three moms and the three girls got along great.  It was quite an experience.  It's crazy how from the moment I got out of the car I felt like I knew so much about this woman, yet we had never met before.  I suddenly wasn't as shy as I think I am.  Diabetes has changed me.  I was comfortable laughing with her, crying with her, and just sharing stories from the heart.  We shared stories that other people may think are insignificant or silly but we all "got it".  That's the hardest thing about the big "D".  People just don't get it unless they live it... every.  single.  day.

This new friend's daughter was diagnosed at age 3.  It amazes me that after six years she she is still wanting to reach out and connect with other people.  It felt so good to hear someone else's stories, whether good, bad, funny, or sad, and say, "I know exactly what you mean!" 

We got to her house at 6:30 and didn't leave until 11:30!  Talk about out of my character!  I am such a stickler about bed time.  Ah well, it was a wonderful night and just what the doctor ordered.

Pennsylvania

So we are 4 days shy of pumping for one month.  In some ways it seems like yesterday and then sometimes it seems like we've been doing this forever.  Taylar's numbers have been slightly more cooperative but we have still seen our share of lows and highs.  I had it in my head that going on the pump would be a quick fix.  Boy was I wrong!  It's still a lot of work, if not more.  I am guessing it will get easier and I shouldn't complain seeing so we're only a month in.  When Taylar was first diagnosed, it took a while to figure out her shots too.  I'm just being impatient I guess. *sigh*

More changes were made on Friday at her first pump follow-up appointment so I'm back to getting up at 12 & 3am.  Well, I really haven't stopped checking her in the middle of the night but lately if her midnight check was in her range I would sleep through until the morning.  I was actually starting to feel like a person again!  But, not so fast!  Back to checking.  Ah well, that's okay.  It gives me peace of mind anyway.

Taylar and I went to Pennsylvania last weekend.  We drove.  For six hours.  I was dreading what this was going to do to her numbers, but I nailed it by using temp basal rates for the latter part of the drive.  You certainly can't do that on NPH!  (I had to pat myself on the back for that one.  Of course then we had pizza for dinner and, well, that was the end of that.  But I'll save that for another time.)

We also went for a hike at the beautiful Ricketts Glen in PA.  It's famous for the many waterfalls that you see along your way up the mountain.  If we lived closer I would be there all the time.  Anyway, we did not complete the whole trail to the top because I didn't think Taylar could make it the whole seven miles AND we were hiking with my almost-8- months pregnant sister!  Both of them did great though :)  An hour in Taylar's reading was 120 and that was after having a juice box.  We still had a ways to go and I did not want to deal with a low on the side of a mountain!  Now here is a huge reason why I love the OmniPod.  All I did was set her pod on a temporary basal of -25% for one hour.  It took us just about an hour to complete the hike and when we were done her reading was 150.  Yipee!  I called that one a success too. 

This is the 40 foot waterfall.  They kept getting bigger and bigger as we hiked. Just beautiful.

So for now I'm still learning and still hanging in there. There are only 9 days of school left for Taylar and I'm very excited about that.  I'm planning on enjoying this summer to its fullest.

Tear jerker

A poem in memory of the author, Gary Hempleman, for all children with diabetes.



She walks down the hallway in silence so deep,

Keep watch over him, as her little one sleeps.

With meter in hand, she opens his door,

Making sure not to wake him as she crosses the floor,

She sits on his bedside and brushes his hair,

As he dreams of shooting baskets, without a "D" care.

She holds his hand softly; his fingers so small,

As she watches and wonders why "D" came to call.

While she watches him sleeping, so peaceful and warm,

The forces inside him fight a constant "D" storm.

Will he ever be free of shots and blood testing?

She sits and she wonders as she watches him resting.

The beep of the meter breaks the silence of the night;

A small drop of blood tells if everything's right.

The seconds count down to the final display,

I hate this damn meter; i want to throw it away.
The number is fine, one down, a lifetime to go,

As he turns in his sleep, will he ever know?

Why does this "D" happen to someone so small?

My son is my hero, but my baby most of all.

She turns at his doorway, looking back one more time,

It's a nightly routine of the very worst kind.

She walks down the hallway and time passes by,

As she sits in dark silence and quietly cries.

I have to stay strong, and for him i will fight,

We'll battle this "D" with all of our might.

I'll teach him to master and conquer this foe,

This "D" will not stop him, i promised him so.

~Gary Hempleman~