Sunday, June 29, 2014

The ugly truth.

I can't seem to find the words to write here of late. I've tried multiple times. There is so much I want to say, could say and even need to say, but, truly, all of it originates from the same place....I miss my boy.

I want my baby back. 

Nine months ago I held his swollen hands. I kissed his cheeks and forehead. I ran my fingers through his hair. My tears fell on his face.

There are times he feels so close, yet so far away.


We miss him so very much. More and deeper than words could ever explain.

I want to be that quintessential family, the parents with their three children just living life as it comes. You know, the family we were 'supposed to be'.

I'm tired -- of being that family. The family whose child is sick, the family whose child died, the family who is grieving, the family that the awkward silence seems to follow. The family left trying to redefine what their life will look like, yet again.


What you want is not always what you get...that's a life lesson that we all learn at one point or another. We've taught our children how to make the best of a bad situation and that there is always something to be thankful for.

But, if I'm going to tell you the truth, right now I want to yell. I want to scream. I want my boy back.

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Friday, June 20, 2014

More information. (Please read!)

 
Bryan and I would like to take the time to answer a few questions that we've been asked within the last few weeks and that you may be thinking about yourself. 


Why are you hosting this event?

Well, we think the main purpose is pretty simple. We want to continue celebrating Wyatt's life and help to carry on his legacy. We don't want to stop celebrating his 11 years. Our son may have died, though he is still very much a part of our lives each and every day. We've come to notice that can be difficult for some to understand. I can say with confidence, July will never pass by without us celebrating him and his birthday in some way.

By hosting this event we are inviting you to celebrate, remember and honor Wyatt with us as he celebrates his first birthday in Heaven.


Why do you choose to raise money for the UMDF?

Mitochondrial Disease is a progressive disease that has no cure. A disease that can cause body systems to fail due to a lack of cellular energy -- the brain, heart, liver, skeletal muscles, gastrointestinal and respiratory systems can be some of the most impacted. Each of Wyatt's body systems began to deteriorate as the disease progressed within him, until his body was severely impacted and he died of multi-system organ failure. Mitochondrial disease took our son's life and has changed our family's forever. There needs to be better treatments available and, we hope, a cure. While there may not have been treatments or a cure in Wyatt's lifetime, we still believe it to be possible for another individual, another family, who is waiting and hoping. As we celebrate the life Wyatt lived, we hope you will help us in our mission to help other families living with Mitochondrial Disease. A treatment option or cure for Mitochondrial disease would change a family's life, but this time it would be for the good. So, maybe one day they won't have to say goodbye too soon.

Why did you decide on a virtual race?

We chose a virtual race because it has the ability to include anyone from anywhere. When we were thinking of dates to plan a 5k or something similar we were running into conflicting schedules. I also was feeling a little overwhelmed at the thought of planning an event in a limited amount of time. A virtual charity race seemed to solve both problems in this case. Those who we love and those who love Wyatt from all over can join us in celebrating his life and I have the hope of having fun with it myself.

We look forward to seeing pictures of those who are celebrating and participating with us!


What do I need to do to participate?

1. Decide on the distance you hope to complete through the month of July. You have the choice of 1 mile, 5k (3.1 miles), 10k (6.1 miles) or a half marathon (13.1 miles). Keep in mind, you can complete your distance all at one time or you can work on it throughout the month...that's up to you.

2. When you decide on the distance you wish to complete you can visit the following link to formally register -- http://www.active.com/any-city-pa/running/races/run-walk-or-roll-with-wyatt-2014?int=

Registration is easy and secure...we made sure of it. No need to worry.

3. Once you complete the registration process you will be ready to start running, walking or rolling on July 1st. We will not be checking times or distances...this is all based on the honor system. AND by the pictures that we really hope you will be sharing with us during your run, walk or roll...we look forward to seeing pictures of your smiling faces! (You can post your pictures on the facebook page, tag us in the picture via facebook or instagram and/or email them to us at -- thehouseofdestephano@gmail.com)

A quick tip: There are apps available for smartphones that can help you in keeping track of your distances -- Nike+, map my run and run keeper are a few that we have used with success. Map my run and run keeper apps are free...we don't recall if Nike + was also free or if it had a small charge.


Things you might like to know...

1. For those that have already registered and will be participating, we will begin mailing "race packets" tomorrow morning. The race packet will include a race bib that you have the option of wearing during your chosen distance and a few small extras.

 (The race bib...)


2. A finisher's medal will be awarded to each participant who has registered. We will be mailing them following the course of the event (at the end of July).

(The medal...)


How can I help?

1. Talk about it! Tell your family and friends about the charity event. Share with them what you know about Mitochondrial Disease and how they can help.

2. You could also go like the Facebook page and maybe even share it with your friends.

3. You can choose to share any of these links via social media websites or email.
www.thehouseofdestephano.com, https://www.facebook.com/runwalkorrollwithwyatt or http://www.active.com/any-city-pa/running/races/run-walk-or-roll-with-wyatt-2014?int=

4. Register and join us.

5. Better yet, rally a few friends to register with you. Completing it together will be fun!

Throughout the last few years a lot of people have always told us if we ever needed anything to just ask. We didn't always feel comfortable asking for help, in any form. But we are asking for your help now. It would mean a great deal to the four of us to feel the support of our friends and family at this time. In creating this event we hoped to honor Wyatt's birthday, while also raising money to further support the research and hope for better treatments, or maybe even a cure, for Mitochondrial disease. We would truly love for nothing more than to help another family avoid the pain that comes with losing a child.


Why is this important to you?

Bryan and I said from the start, if we were to "host" any event at all, it must be ALL inclusive. Meaning anyone of ANY ability could participate. Wyatt (as well as Bryan and I) loved and took notice when people made an effort to make a place or event accessible to all ranges of abilities. We still take notice because it always meant so much to us. We want to encourage anyone and everyone to participate with us.

Whether you are running fast, slow, inside or outside, on a track, trail or treadmill. You can be walking or crawling, rolling in a wheelchair, on a bike, roller skates, skate board or even down a grassy hill. It's absolutely permitted to skip, jump, dance or boogy your way through the distance. We just hope you will be moving forward and having fun with it.

Wyatt had an incredible ability to have or create fun and appreciate each day that he was alive. At 11 years old he knew how to celebrate life...to celebrate his life, even while his body was physically failing him. Each day is a gift, a privilege that is often overlooked through the stress, responsibilities and schedules we keep. We want this event, Run, Walk or Roll with Wyatt, to give you time to let go of stress and worry. Time you can choose to spend with family, friends or even alone. Time to enjoy -- to relax, to smile, to laugh. It can be a time to simply celebrate life.


We sincerely hope to have you joining us.



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