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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Saturday, May 31, 2014

Run, Walk or Roll with Wyatt.


 


Hi guys! 

I know it's been awhile since I've published a new post here on the blog. It's not for a lack of writing or fewer thoughts about various parts of our life. I actually have several pieces completed, though I haven't pushed the "publish" button on any of them yet. I'm not sure why, exactly. I guess I've just needed to "be" without putting it out for all to see at the moment.

But regardless of all that, today I'm here to announce a project that our family has been working on in honor of Wyatt's upcoming birthday in July. It's something that we're all a little excited about. We've been brainstorming as a family to come up with a way to honor, celebrate and remember Wy. Maggie initially liked the idea of hosting a 5k in his honor and we used that to come up with our current event, "Run, Walk or Roll with Wyatt", which will be a virtual charity race.
What is a virtual race? -- Well, a virtual race is much like any other race up until "race day." You will first be required to register through the event listing via active.com. At that time you will choose the distance you want to run, walk or roll 'with' Wyatt -- 1mi, 5k, 10k, half marathon (13.1mi). Registration will be open through June 2014. 


You will be able to complete your chosen distance ANY PLACE and at ANY TIME of your choosing within the month of JULY.
You can begin logging your miles with Wyatt on July 1st! Seeing as there is no destination, specific day or time that the race will be held means that ANYONE from ANYWHERE within the country, or world, can participate.

ANY age, ANY place, ANY ability, ANY pace, ANY day in July -- no limits.

Upon registering we will have special race bibs available and mailed to each individual entered. Custom medals will also be awarded to each participant following the month long race. We hope to have T-shirts available for purchase, as well, but will have more info about that at a later date.


The only requirements during the race is to SMILE! Have FUN! And we ask that you (Please!) take a picture during, or upon completion of, your selected distance. Don't be shy! We would LOVE to see who is running, walking or rolling with Wyatt in honor of his birthday! 

You can post your pictures on the facebook page, tag us in the pictures on Facebook or email them to me at thehouseofdestephano@gmail.com. To see pictures of who is running, walking or rolling with Wyatt would mean a great deal to our family. 

Even better, all proceeds from this event will benefit the United Mitochondrial Disease Foundation to further research and our hope for a cure. Though a cure was not to be for our son, we still imagine a life without the presence of Mitochondrial Disease for all the others still hoping -- how amazing it would be! 


So, gather your family, your friends and even your furry loved ones -- let's all do it together! You could even turn up some music and dance a few miles...I know Wyatt would be all for that. :)

We would be so honored if you could join us in celebration of our boy whose spirit was as strong as any superhero. Wyatt was determined to enjoy his life despite any labels or life limiting diagnosis listed on his medical charts.

Please help us to carry on the legacy Wyatt left behind and CELEBRATE LIFE!



Please, please, please share with your friends, your family, your co-workers, within your communities -- spread the word! We would love for this event to be a great success.


Thank you from the bottom of my heart for the continued thoughts, prayers, love and support as we learn to navigate through life without our boy. This road has been the most difficult yet and finding a way to keep going has not been easy. I will never stop grieving because I will never stop loving. But remembering him openly and celebrating his life helps us all tremendously!

I now not only live a life for me, but I live a life for him too. So, we must make it a great one -- with him, for him and because of him.
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Sunday, May 4, 2014

Running Disney.

The month of April always seems to be a busy month for us. This year being no exception. (And now it's already May!) Spring has finally come to stay, it seems. The school year will be coming to an end fairly soon, which is hard to believe. It's as if we started this school year living an entirely different life than we will end it with. Last week marked 7 months since Wyatt died.

For the last few weeks I've been pulling out all the warm weather clothes and making sure everyone has enough of all that they will need. You may remember, I mentioned a few months ago that we would be traveling back to Disney World: Wyatt's very favorite place in the world. This has been emotional for us, but we felt we needed to come back. For the four of us, but also for Wyatt...if only it be for the reason that it was his very favorite place in the world! He asked me to go to Disney World every day for quite some time before he died...up until the very point he wasn't able to speak anymore. But I'm sure he was still thinking it! All was right in his world when he was here. I only hoped we would feel a little of that magic this time when we were here too.

We returned to 'run Disney' in celebration of Wyatt's unbelievable and beautiful life. Unfortunately, healing was something we were unable to give Wyatt on this side of Heaven, but we now celebrate his eternal healing there (in Heaven). Though we have struggled to continue life without him, he's now free of the body that held him back, which is an amazing thought. The first thing he hoped to do in Heaven was run again.


Yesterday, our family ran in celebration of all that Wyatt is, was and will always be to us. In celebration of the amazing boy who pushed beyond the limits, the labels, the tubes and machines. We ran for him, 'with' him and because of him in his favorite place, Disney World.

Jilly and Grandma ("Nanny") ran as a team in the "Family Edition" race at the ESPN Wide World of Sports at 10am. While, Bryan, Maggie and I ran 5+ miles throughout Animal Kingdom starting 12 hours later at approximately 10pm. We completed the race in a respectable time and were far, far from last -- which always feels good. ;) It rained for both of the races, but it didn't dampen the fun. We each ran through the soggy finish lines with smiles (and a little relief that we accomplished it!) We mentioned multiple times to each other how much Wyatt would have LOVED this race. There was so much excitement around. He would have been thrilled with it all.



For you, with you and because of you, buddy. We're missing you and loving you so much!


(I posted more pictures and video on Instagram. They will scroll through on the sidebar under the small "Our view of life." banner. You can click on them to see them larger and to play the short video clips.)
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Sunday, April 20, 2014

Happy Easter.

Today is a day that brings us HOPE.

"I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die."  -- John 11:25


Easter is the hope that we will be together again. We're missing Wyatt so, so very much, but I can't wait to spend eternity with him in Heaven. Until then, we wait with hope and believe.

Happy Easter!
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