Thursday, October 6, 2011

Peyton's Sweet Sixteen

Today is my baby girl's 16th birthday.  I can't believe it.  I guess the saying is true - time flies by when you're having fun.  I can remember the day she was born like yesterday.  She was so tiny - 5 lbs and 18" long.  She was absolutely perfect.  That hasn't changed and neither has her petite size.  She's beautiful inside and out.  She's smart and takes pride in making good grades.  She's talented and loves to perform - dancing, cheering and acting.  She gives no less than 100% to everything she takes on.  She is a ball of energy.  She is strong-willed.  She's a joy that lifts all around her up.  And best of all, has a huge heart.  I'm so proud to be her mother.  Thank you God for my precious gift - Peyton Nicole.

So as I said yesterday, birthdays are big in our house.  And being it was her sweet sixteen, it wouldn't have been complete without a BIG party.  So we started planning this event a couple of months back and she decided the theme would be "Circus Circus".  I agreed it would be fun!  Okay, I have to say my daughter happens to live in the clouds sometimes and thought we would get an elephant for her to make her grand entrance on!  After that idea was squashed, and laughed at many times the last couple of months, we decided to rent a "big top".  I thought this idea was much more do-able than the elephant!  It still took a little convincing that elephants aren't exactly easy to come by and would be an incredibly expensive waste of money.  So once she got over the fact that there would be no wild animals of any sort (she tried monkeys also!) we got down to planning the other details.  She had a popcorn machine, cotton candy, lollipops, ice cream punch and other circus fare.  Served cotton candy, cookies 'n cream and lemonade cupcakes - they were excellent!  For entertainment, a DJ and caricaturist.  The caricaturist was a big hit with the kids - he did an amazing job putting all of their personalities to paper.  I did feel a little sorry for him though, for two hours he had to endure the lovely blaring hip hop music these teens love.  The best part of the night for me was seeing my beautiful girl make her entrance in her party dress.  She looked absolutely amazing.  Her shining beauty brought tears to my eyes. The party was a success and I believe all had a good time.  Especially since they are already trying to plan another one - Crazy Teenagers!! 

Finishing Touches

Special present from Aunt Brandee!!! 

Ready to party!

Our "Big Top"

Peyton and her BFF

Thomas, Peyton & I

Beautiful Girls!!!

The "VIP"s

Tonight I get to watch Peyton perform as Amber in her high school musical Hairspray.  I can't wait!  She loves the stage and it shows in all of her performances!  

Happy Birthday My Princess - I Love You!!!

Hope, Love, Courage &Faith,

Wednesday, October 5, 2011

One Year

It feels like 10 years ago when I first heard these two haunting words ~ Mitochondrial Disease

One year ago today Thomas & I sat in Dr. K's office and received the worst news parents could ever hear.  Trace has Mitochondrial Disease - a disease with no cure, no effective treatment and one that could take his life at a young age.  I remember feeling like I wasn't there, like my spirit had been lifted from my body, I was numb.  Dr. K talked to us a little then sent us home to get over the shock.  Although she had to deliver this devastating news, she did it with compassion & for her I'm forever grateful.  We set up an appointment to come back in a couple of weeks with all of our questions, etc.  I left with my packet of mito info, green bracelet, mito pin, and Trace's stuffed turtle "Mito Mike".  I carried Trace to the car, buckled him in his carseat, kissed him on the cheek, set Mito Mike beside him, and cried my eyes out in Thomas' arms in the parking garage.  I felt so scared, lost, angry and sad all at the same time.  I had no strength that day, I felt my world crash around me. 

The next day was Peyton's birthday. I'm not going to lie it was hard not letting the awful news of the previous day overcome me.  It did from time to time, but I kept it to myself.  Birthday's have always been BIG celebrations in our house (as you'll see in tomorrow's post).  I didn't want to ruin or steal her birthday thunder.  Especially since her previous birthday Thomas & I were inpatient with Trace for 3 days.  Thomas and I decided not to tell Peyton about her brother's disease until we were educated about it ourselves.  This was a very good decision, she had lots of questions when we told her and I was happy to be able to answer them. 

The next 11 months were a busy learning experience, filled with multiple appointments with 9 specialists, thousands of doses of medications, lots of learning, hundreds of labs, tons of medical tests, AFOs, oxygen, learning more, hundreds of therapy sessions, daily seizures, fevers, illnesses, learning even more, extreme fatigue for Trace, 3 visits to the ER, surgery, learning life can revolve around poop, heat/cold intolerance, counting every ounce of weight, counting calories, 4 day hospital stay for stomach virus, knowing how little sleep you can actually function on, meeting some very special friends, and lots of LOVE. 

I know this coming year will bring more of the above and I'll learn so much more from it all.  I have come to terms with this awful disease.  I will do everything I can to beat it for my son, for everyone battling mito and for all the mito angels in heaven.  It's been a long hard past year, but has only made us stronger together!!  Thank you so much for all of your support throughout our journey.  I couldn't have made it this far without it.

What I have learned from the journey so far:

1.  Appreciate life, never hold back

2.  You'll never know how strong you can really be

3.  Never doubt God & the power of prayer

4.  Family always first

5.  My husband is my best friend

6.  I'm not alone

7.  It's okay to cry, even if it's everyday

8.  Accepting help doesn't mean you're weak

9.  Life will change & change is okay

10. I am blessed

Trace has been through so much in his 3 years because of this disease.  It's a selfish thing that takes and takes from my baby.  But through it all, mito has not taken Trace's spirit or strength.  I refuse to let it take mine either.  I watch Trace go through things I can't imagine and don't know if I could endure.  He will lay there in that hospital bed, see the nurse coming and immediately start crying because he knows she's there to stick him (or do something worse) again,  after she's done he'll say YEAH! & clap with teary eyes.  That's the spirit and strength I'm talking about.  He's amazing.  He loves everyone in his world.  He lights up a room with his smile, crazy blond curls & big blue eyes.  He's a joy to all who have been blessed to know him.  God chose us to be his parents and for that we are most blessed.  He is here for a purpose for which only God knows.  One day God will reveal his plan for Trace and it will be great. 

I Love You Trace, You Are My Heart

Hope, Love, Courage &Faith,