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,

No comments:

Post a Comment