...To Make or Become Different

It's been roughly one month since Courtney's diagnosis.  The first day we were released from the hospital I was terrified I would mess up giving her her insulin shots.  The first week I was scared to go to work and leave her home.  At the end of this first month I can honestly say, I've only been feeling worse about this change to our life.  This change to Courtney's life.

We've been battling blood glucose highs and lows.  I've messed up with recording her numbers.  I've had her in predicaments where her blood sugar was so low she could barely walk.  I've never concentrated so hard on simple meal preparation in my life.  We generally eat well, but with Courtney, every meal counts. No one sits down at the table and eats until Courtney's blood work and insulin regime are done and clear.  I don't want her to feel left out.

I think the hardest part of it all is watching Courtney change.  I can't explain it completely, but we all notice the change.  It's heartbreaking.  And until you watch your own child struggle and come to grips with a child hood illness, I can't say that I've found much comfort in another parent telling me to toughen up.  

I'm tough!  I'm so tough that when she broke down in tears at a restaurant today because her glucose level wasn't stable enough to eat when everyone else was eating, that I held it together.  Yea, I held it together.  God knows that I wanted to cry with her.  I felt the lump in my throat, and avoided eye contact with everyone else at the table, because I didn't want to bust out in tears.  

Today, again, at her first day of tennis lessons, she came out to me with glossy eyes in the middle of the lesson.  When I asked her what happened, she said the teacher singled her out asking why she wasn't hustling like the rest of the kids.  Courtney told the teacher she was scared to exercise too hard, because she didn't want her blood sugar levels to get too low.  She got embarrassed and came outside.  I wanted to melt. I never told her to hold back.  But she's putting restrictions on herself.  She's scared to do things.  That's NOT my Courtney.  This is a changed Courtney.  

I have to get my old Courtney back.  

So as we continue to figure out how to turn her thought process around regarding this disease, I've encouraged Courtney to start a video blog.  Should be interesting!  

We've also been working on creating the support group and 2 fundraising efforts.  The fundraising efforts have been the hardest because it's very hard for me to ask for donations or money.  I've always been the one that gave money, but the support of family and friends has been wonderful.

As soon as I have a few posts of Courtney's video diary, I'll be sure to send the link for you all to view.  And if you are feeling any types of generous, please feel free to donate towards any or both of the funding projects we're working on below. 

Raising Money for her to go to diabetes camp

http://www.gofundme.com/77xgcs

Raising money for our race to cure junior diabetes

http://www2.jdrf.org/goto/CourtneysCandyCrush

Sugar & Spice and Everything Nice.....

My family and I sat in the family room watching After Earth together. It was after church, and there was an eerie feeling in the room.  It almost felt forced that we were all acting "normal".  I know for sure that I was forcing myself to stay engaged, laugh, and act completely normal.

Then my cell phone rang, it was the kids pediatrician.  I darted out of the family room, into the dining room, and explained why I need an emergency call back on a Sunday afternoon.  I'm known for blowing things out of proportion, so as I casually explained the issue, I tried to laugh it off.

"So, is this just something that I can bring her in at your office sometime next week?"

"No, this is serious.  Take her to the emergency right away. I will call ahead and let them know you guys are coming.  She'll probably need to stay a few days."

He said some other things, but I didn't hear them.  I banged on the refrigerator to get my mom and husbands attention and mouthed "We need to go to the ER".  Everyone hopped to it.  No one seemed surprised, or shouted in disbelief.  My husband rubbed his head at the top of the stairwell, I knew that look.  He was scared and upset.  I couldn't go their just yet.  So, I just got her stuff together, called our in laws and we all walked out the door.

Courtney kept asking what was going on, and why did we need to take her to the hospital.  My husband and I just brushed it off and gave her vague answers.  On our way to drop our other two girls, tears trickled down my face.  **MAN UP CRYSTAL**  Okay, okay, I wiped the tears and proceeded to my destination.

My mom followed in her car behind us.  The ride seemed to be soooo long.  I mean, it's a 13 miles short ride to Children's Hospital, but this time it seemed especially long.  It didn't help that when I was no more than 1 mile from the hospital, some lady hit the back of my car.  So of course I had to deal with that, and I swear she must be a praying woman, because God held my tongue.  I knew she must have been texting or something because I noticed her earlier on 395.  I wanted to cuss her out so bad, but I exchanged information and jumped back in the car so we could finish on our way to the hospital.

We got to the ER, and the triage nurse took down our information.  She commended me for "knowing the signs" and calling the pediatrician.  She told us that the doctor had called ahead and they were basically ready to take us back.  I had joked with my father in law earlier that we may get seen right away because it was Super Bowl Sunday, and parents may let their kids bleed to death just so they could avoid the ER and stay home and watch the game.

So they took us back and I swear it seemed like 4 or 5 doctors or nurses came to that room at different points in the evening.  They all said the same thing "well we can't confirm until all the test results come back, but we are 99.99% sure it's.....she's going to have to stay over night so we can monitor her. Then you guys are going to have to take a class tomorrow to learn how to deal with this condition.  Then there will be subsequent clinic visits. And there is a research study funded by the NIH that we'd like to talk to you about."

My mom walked out the room a few times.  Her eyes glassy with tears.  Again, I couldn't go there.  I need to concentrate.  Focus on all this information they are spouting at me.  I need to not be rude to the two individuals that barged into ER room, discussing their research study while the "non official" diagnosis was still ringing in my ear.  **GET OUTTA HERE NOW!!!!**

Eventually we were brought up to our room. Not more than 1 year ago, Courtney's older sister was on the same floor for a week recovering from complications with asthma.   Courtney was impressed!  She was being waited on hand and foot since we entered the hospital. They brought her food, movies, games, books.  I think she thought her hospital room made up for the IV she had in her hand.  She absolutely hated that thing!

Oh wait....I don't think I ever told you guys why we were here in the first place....the doctors confirmed that night that she has Type 1 Diabetes.  No surprise here.

I knew something was wrong a few weeks ago, when we traveled to NYC.  We took the bus up for my oldest daughters 13th birthday.  Courtney drank so much water, juice, soda, everything that weekend.  Then she would subsequently go to the bathroom.  During dinner she went to the bathroom 3 times.  On the way back from NYC, she went to the bathroom 3 times.  I was a bit annoyed.  What in the world is going on!?  I figured it was a UTI, and made it up in my mind to make a doctors appointment that following week.

When I got home that Sunday, I google her symptoms and T1D kept popping up.  I didn't want to claim it, and I never mentioned it to my husband.  I didn't want him thinking I was being ridiculous.  So I kept my suspicions at bay for that whole week, and when my mom came over after church I had her test Courtney's blood sugar level (my mom is a Type 2 Diabetic).  The meter read 451, which led to the call to the pediatrician which lead to me here now.

To say I am overwhelmed is an understatement.  My husband and I had to learn how to inject our baby with needles 4 times a day insulin injections, 5 times a day finger pricks to check blood sugar.  Courtney seems so normal about it.  She was initially shocked at the thought that she would have to get stuck so many times a day, but then it's like she got over it.  I've spoken with her, and told her it was OK to cry and be sad (although I hadn't allowed myself to completely do the same).

Daddy let Courtney give him a shot (of saline) so he could feel the needle.

After 6 hours of training on how to properly take care of Courtney, we went home.  Tired and exhausted.  I fumbled with needles and had to prick Courtney's finger 3 times because I didn't do it right.  She just stared at me and then said, "mommy, no you do it like this".  Ha!!

The next day we had to pick up the prescriptions from the pharmacy.  I'm not going to go into that. Let the picture below marinate.  Ummm, yea.  *sigh*

I went back to work on Thursday where I began to have an anxiety attack as I walked down the hallway.   Everyone was so cordial, and smiling, and I have never faked "being OK" so hard in my life. I didn't want to say hi to anyone.  By the time I reached my desk, I had tears streaming down my face.  I couldn't do this. It was too soon! I had to leave.  I talked to my supervisor, and she completely understood my anxiety and told me to go home.

I felt so much better when I reached her. I don't even need to be next to her once we are in the same house. It just feels good for now to be in control of something so new, so fresh.  I'm going to give myself time to come to grips with this. I'm not going to force it. I know eventually it will be very routine, and that I will be running to someone's happy hour because I need a break.  But for now, I am just going to enjoy her company.

Funny thing, she wrote this song last week (before her diagnosis) and whenever I hear it now I get tears in my eyes.  How did she know I would need to hear this?  I swear I love this girl!!

Do you know anyone with Type 1 diabetes?  We've been searching for kid support groups in our area so she can talk to others.  It's been a dead end.  Most support groups are in VA or Montgomery County.  I'm considering starting my own.

Thanks for listening!!