parenting

Day 2 DBlog Week: Type 1 Poetry

This week I’ll be participating in D Blog week.

Today’s topic:

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

 

*Note: I used to write ‘tons’ of poetry in high school and college, creative wring was my minor.  But I haven’t written much if any in the last 15 years.  I wrote a free form poem-like post last week that felt great to write.  I am going to try a different one for Day 2 of DBlogWeek…

 

Dreaming of numbers too high or too low
lots of information I never expected to know
lost in a world that can’t be explained
watching, helpless to remove her pain

but she’s stronger than I am and smarter too
she remembers and does just what she needs to do
even though it’s just beginning, she got it I know
my brave little girl, will continue to grow

and I will support her and pray for a cure
and she will continue to surprise me more
even though it’s not fair and hard everyday
I will love her and cherish her come what may

DBlog Week Day 1

This week I’ll be participating in D Blog week.

Today’s topic:

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

I am new to this but it’s God’s timing that this week is happening so soon into our journey with Type 1. I hope to read other blogs and get some good information from them. I am learning that I am really going to have to be an advocate for my daughter. My first meeting with the school I thought was to create the 504 plan, but it was really just to inform the teachers/nurse and start a health plan. Almost 3 weeks later and we still don’t have a formal 504 plan and there is only 2.5 weeks of school left. I wouldn’t worry but there is a field trip and I really want my daughter to go without hassle. Also one nurse at the school (the one who texted me and updated me daily) took a new job and had to leave last Friday, again with only 2.5 weeks left. So that’s frustrating. But I have faith it will work out and my daughter is really doing well. We are going to attend a JDRF walk this weekend to see what it’s about and hopefully meet other local’s to connect with. We are looking forward to that. I am trying to get my daughter interested in attending a Type 1 camp in the state but she’s not sure. I am hoping that by going to the walk this weekend, she will become more interested.

scared and confused

Scared and confused
wondering why us, why now
yes it can be worse
yes it can be managed
yes it just sucks
i don’t feel strong enough
but i have to be for her
i don’t want to tell her my fears
i don’t want to tell anyone
but it hurts to hold it in
i pray cause i need to tell someone
i know i should not worry or but rely on Jesus
i struggle with doing that everyday
sometimes i can forget or not think about it
but then i feel guilty for not thinking about it
i still don’t know enough about it
the things i read scare me more
i have trouble focusing on anything and the thoughts bounce around my head
work, worry, home, worry, sleep, worry, check, worry
plan, plan, plan
wondering why us, why now
scared and confused
Jesus is calling ‘Don’t be so hard on yourself…Trust me, and watch to see what I can do.’

My daugher’s story continued

Things calmed down somewhat but I don’t remember all the details.  We were to have a diabetes educator come in the next day to help us learn all we needed (to at least be able to go home).  Her initial level that day was 799 and I believe her A1C was 14.5 which meant she had been average 300-400 for the last 3 months.  This is all still new to be so please forgive me on terminology.

The next day the educator helped us to understand what was going on and we even started drawing the insulin and giving test shots on an injection cushion.  I actually started giving my daughter her shots that day too.  She gave herself one that evening.

We were moved out of PICU and into a regular room. The next day we learned how to use the pens instead on the syringes and we were discharged with some instructions.

Looking back (only about a week), I am still shocked how quickly things moved.  We only spoke to her diabetes endocrinologist once.

We are still working out dosages, I report them thru a website and the doctor/nurse can message me changes.  But my daughter is coping so amazingly well.  She likes to do her sticks and shots herself (I supervise and occasionally give one in the back of the arm). She like to figure out the counts and dosages, she loves math so that helps I’m sure.  She is just so brave and wonderful that it actually breaks my heart because this sucks.  She doesn’t deserve this and it’s forever.  I am scared for her but want her to live a live without the fear and with hope and it’s just so hard.  I pray for her and ask for others to pray for her.  I would take her place in a heartbeat but I can’t.

My daughter’s story

I had an evernote with all the issues she has had since Christmas…there were 12 items on it.

Someone posted a Diabetes awareness cartoon on Facebook, she had almost every symptom.

I was in denial.

I made her fast before the appointment anyway.

At the Dr. I showed him the list and the cartoon.  I asked for a test.  After the urine test, he said we should go to the hospital for better blood work.  He mumbled for me to stay close by because we might need to go to anther town later.  I thought he meant to see a specialist. After the blood work (and waiting too long), we went to the mall. I got my son a hair cut. My daughter ate Chinese (general tso).  I let work to know I would be late or not in depending.  An hour and a half later, I got the call – we need to go, she needed to be admitted to the hospital in the next town (children hospital with diabetes educators). It’s Type 1 Diabetes.

I drove with my daughter (my mom and son were in the car behind us).  On the way there we are crying, praying, calling family and friends, (she was texting too).  I knew I should be strong for her, I felt guilty and like it was my fault for being a lazy mom.  I knew nothing about diabetes and nothing about type 1.  At the hospital, it was a whirlwind, I don’t think they realized we knew nothing about diabetes for the first hour.  There were questions I could not answer and thing I just didn’t know.  She hating getting stuck with the iv, I was worried about how she was going to handle the shots – FOR THE REST OR HER LIFE!!!!