Saturday, December 20, 2014

Embracing the holidays and Heaven.

Twinkling Christmas lights are strung all over our home. Our Christmas tree lights dance to Holiday music when prompted. Our home smells of pine and berries, thanks to the Yankee candle that burns on the dining room table...because our tree was most certainly not picked from a field in the chill of December, but rather carried up from our basement closet where we store the holiday decorations.

The kids' favorite ornament tells me that it's merely a few days, some hours and a couple spare minutes until Christmas day. Our home is decorated inside and out. We have even strung lights, garland, bows and silver sparkly snowflakes on Wyatt's trees and clubhouse. I guess you could say we have chosen to embrace the holiday season this year. Jilly says we will light our home so bright that Wyatt will be able to see it from Heaven. (We have got to be getting close!) 

Wyatt has been the topic of many conversations among ourselves of late. He had such an enthusiasm for the holidays and his giving spirit would always shine so bright.

I recently had a dream about, or maybe with, him. He and I spent the whole day together. I don't remember exactly what we were doing, but I could feel it was special. Just before I woke up I looked over to see him smiling a very content smile. I recognized it right away--I know that smile well. As if everything was just as it was supposed to be. I asked him why he was smiling and he looked at me. I could feel his gaze, his spirit, his soul. As he simply replied, "because I'm so happy."

I've been holding a very tight grasp on that moment these days as Christmas creeps closer. My body tenses and my heart becomes heavy when I think of spending another Christmas day without our boy. I find myself feeling a bit anxious about sitting in a church Christmas eve this year. I remember years past, as we helped our three small children hold their flaming candles at the end of the service each Christmas eve. They were always excited about that particular part and I feared the families in front of us would be caught on fire if I looked away for even one second.

For now, at this moment in our lives, the holidays seem to make it even more apparent that one of us is missing. There is always an empty seat at the table, it's a little quieter in the house, there are less presents to be thought of, bought, wrapped and placed under the Christmas tree. I could certainly keep listing the ways in which it's noticed...but even so, this year we've chosen to embrace the holiday, both here and in Heaven. The thought of solar Christmas lights wrapped around Wyatt's black granite stone at the cemetery has even been brought up as a possibility. We so dearly miss his festive spirit in our presence, but we do feel him near. Just as we tell the girls, we are still celebrating the holidays together, just in a different way now. I can only imagine what the celebration of Christmas is really like in Heaven!

Embracing the holidays and Heaven--it's what this year has led us to. With him, for him and because of him.

Wishing you all a very happy holiday season!


With love,
The DeStephano family 
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Monday, November 17, 2014

A sister's point of view.

This weekend our family spent time at the A.I. duPont Hospital for Children's annual memorial service in honor of the children (patients of the hospital) that have died. It was a beautiful service. As a sibling representative, Maggie was asked to speak about her experience as Wyatt's sister. She spoke genuinely, with love. She's wise beyond her 13 years. It took a lot of courage to stand in front of a room full of people speaking about her brother, who she holds so close to her heart. We are so proud of her! She gave me permission to share here what she wrote (and approved the few pictures of Wyatt and her together):


     Hi, everyone… I’m Maggie. Avid reader, field hockey goalie, first born, and sister of Wyatt DeStephano. Which is why I’m here; to talk about my brother and my experience as his sister.

    Wyatt was born with Mitochondrial Disease, but he was just my brother to me. I honestly never completely understood all of his diagnoses and medicines. For a while, I just thought the bags and giant IV pole he had to wheel around were a nuisance. But when I got older, I learned more of what most terms meant. I worried about him a lot.



    Wyatt had two wheelchairs throughout his life. His first power chair had the first ever made color screen and his name was embroidered on the back. He chose red for the color. His last one was purple—his favorite color. He personalized that one with mustache duct tape on the arms and stickers from the hospital. Wyatt liked to make all his machines look the way HE wanted them to, unlike they do in the hospital. Stickers, tape, spongebob golfballs as a handle…whatever it took.

    We tried to make life fun for Wyatt, even the most simple of things would turn into a big event. That sometimes made life feel a little easier because we got so into it we just forgot about the rest. Reality would come back to us when he began to laugh so hard he couldn’t breathe and his machines would let out a very long and drawn out beep. Sometimes I felt like life was unfair for Wyatt; for all of us. Life was hard, but he was just my brother.


    My little brother is a super hero to me. He was very brave and fought for as long as he possibly could. He was also a sarcastic, quick witted prankster. I would like to say he was a brat at times, but I have a feeling my Mom and Dad wouldn’t like that. Though, even more than that, he was very empathetic, generous and loving. If I began pouting he couldn’t help but give in—I would always win. We love each other a lot and had a very close relationship. For three months out of every year we were the same age. Wyatt loved that!

    On September 27, 2013, around 1pm, I was called to the school office to come home early. I wasn’t told exactly what was happening, but I knew why. That evening Heaven gained another angel—I imagine he has purple wings and a green super hero mask. Wyatt and I were both 11 years old that day. I like to think he planned it that way.


       Everything changed the day Wyatt died, in multiple ways. My brother was gone. His hospital bed was taken away, out of our living room which had essentially turned into his bedroom. His machines were carried and rolled out of our home. Our house felt empty. His medicines and medical supplies eventually traveled to Haiti with one of his favorite doctors, who Wyatt liked to playfully refer to as “Dr. Crabby”.

    Six days later I stood beside my brother again, at his viewing service, shaking hands and hugging people…most of whom I didn’t really know. He was wearing his Superman shirt, but he didn’t look like himself. The next morning we did the same thing at my brother's funeral. It was terrifying to me as I said my final goodbye and they tucked him in one last time. He was holding my favorite stuffed animal; one that I have had since I was born and would often lend to him when he was hurting or scared. That little duck gave us both a lot of comfort.


     When I was ready to return to school everyone knew what had happened and was talking about it. I was scared and it really bothered me when the kids would talk about him as if I wasn’t even there. I just wanted life to be normal...like it was supposed to be. With my brother here, but not a life where he was sick. Life around my family never stopped when Wyatt died, even if I thought it should have. It felt like everything around me kept moving so fast, while my family and I stood still. Eventually we did start moving again, albeit slowly. One step at a time.

    Life will never be the same without Wyatt here. But we are learning how to move forward while honoring his amazing life and keeping him alive in our hearts. It’s not easy, but it's been working for me so far.
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Friday, October 3, 2014

A year.

Sometimes there are no words. I'm finding myself in that place right now. I have no words. My mind is constantly thinking. I'm often unable to make it stop, but I still have no words to say.

Saturday was a year since Wyatt has died. An entire YEAR.

12 months of grieving or 52 weeks.
365 days of remembering or 8,760 hours.
525,600 minutes without him and a whole lot more seconds merely loving him for being him.


Sometimes there are no words. But we do want to take a moment to say, we have sincerely appreciated all the continued love and supportive words that you have extended to us and shared with us throughout this year. If you are ever left wondering, please know, your thoughtful words, comments, your love and prayers are heard, greatly appreciated and do lift us up. Thank you.

We have come to realize that we love to hear you say his name, we speak it everyday in our home. We also love to hear you were thinking about him, it brings us great comfort to know he is remembered. We like to hear the way in which his life has touched yours. It warms our hearts and makes us smile as we are so proud of our son (and brother). Thank you for sharing these things with us. 


The memories of Wyatt's life, our life with Wyatt, replay often in our hearts each day. His life was full. Nearly everything we see or do sparks a memory with him. A full life crammed into 11 years I'm so very thankful for. Though it's hard not to wish it to be longer.


"I carry your heart with me (I carry it in my heart)
I am never without (anywhere I go you go, my dear)"  
- E.E. Cummings

I miss him as much as I love him...and I couldn't love him any more.


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Sunday, September 14, 2014

Mitochondrial Disease Awareness Week -- Sharing his story.

This week is Mitochondrial Disease Awareness Week. For many of you who know our family or have followed my writings here on the blog, you are well aware of Mitochondrial Disease and the effect it has had on our family. We've been a living example of what Mitochondrial Disease is and what it can do.

At the very beginning of June I was given the opportunity to share our family's story, Wyatt's story, and our experience of parenting a child with a rare disease. I thought it might be fitting, in honor of Mitochondrial Disease Awareness Week, to share here what I wrote:

Dear _____________ and ________________:

I remember clearly the day that we found out that the baby I was carrying within me was a boy. I can remember looking to my husband and smiling, “We’re having a boy!” I said. I laid one hand on my belly while Bryan held my other hand and we walked through the hospital parking lot to our car following a prenatal ultrasound. We were both thrilled! I couldn’t wait to watch my children grow up together.

My pregnancy did not go as planned and our son would be delivered pre-term. Wyatt Daniel DeStephano was born on July 23, 2002. His name, Wyatt, was picked because of its meaning, “little warrior.” Our baby came into this world 14 weeks too soon and weighed only 2 pounds, but he was perfect. He was strong with a purpose. I was unable to focus on his delicate, frail body or translucent skin as much as others did. My eyes only saw my beautiful baby boy whom I couldn’t love any more. I was holding his tiny body and talking to him as his fused eye lids opened for the very first time. A moment that not many other parents will get to experience.

Months later Wyatt would go on to graduate from the Neonatal Intensive Care Unit. We were able to take him home, exactly 5 pounds of him. It was such a happy day! We did worry about his breathing as he struggled with both Apnea and Bradycardia. But he came home with a monitor, that he wore continuously, which loudly alerted us to his lack of breath or low heart rate. It helped to ease our fears and be together, at home, as a family. We were led to believe the worst was behind Wyatt, the worst was behind all of us. We could now be together to love and care for him just as we prayed for.

Looking back with the knowledge and experience we now have I can say there were signs that something more, or bigger, was happening within our son’s body. Though, at the time, the doctor’s could easily blame his extreme prematurity for much of what he experienced medically.

However, the fact is, they were wrong. We were wrong. The worst was not be behind us.

As Wyatt grew, his list of medical diagnoses grew right along with him. Test after test was performed to evaluate the function of multiple areas of his body. For years numerous physicians studied lab values and ordered additional tests, but Wyatt and his medical troubles never fit into any underlying diagnosis fully. That is, none that his highly trained physicians could find. We were left to treat his symptoms to the best of our ability, one by one. There was always doubt and fear that lingered as we didn’t know exactly what was happening inside of Wyatt. At times it felt much like there was a ticking time bomb within him, but we didn’t know how long until time would run out and his body would come crashing down, piece by piece. The weight of not knowing why this was happening to our child and what was causing it was heavy and overwhelming. 

With his doctor’s guidance, we traveled the country in search of answers for our child’s declining health. It wasn’t until we reached a physician many states away, who lent the majority of his time to research, that we would get a diagnosis that “fit” for our son. The results of both a muscle and skin biopsy told us that Wyatt had Mitochondrial Disease. His body was failing due to a lack of cellular energy.

Mitochondrial disease is a progressive, degenerative disease for which there is currently no cure. The only treatment available to us was questionable and inconsistent among the patient population. The treatment is merely a combination, a “cocktail”, of vitamins that have the potential to help some patients with Mitochondrial disease feel better. However, by the time Wyatt received his diagnosis, the diagnosis that we spent many years in search of, he was already in intestinal failure and would not regain use of his gastrointestinal tract again. This potential “treatment” requires a functioning intestinal system, which made it unusable for Wyatt. At the time of diagnosis Wyatt required 24 hour IV nutrition and medications. He had bags which extended from tubes within his belly to decompress his intestines and relieve the pain and pressure from a failing system. It wouldn’t be long before his body fought chronic and life threatening infections through his blood stream from bacteria that would trans-locate from the failing intestinal system inside him. Each of his organ systems took hit after hit. With each impact to his body he struggled to return to baseline, leaving his health declining with every stressor.

Wyatt was like any other boy despite the complexities and severity of his health. He loved amusement parks, roller coasters and the magic of Disney World. He was the “middle man” of two sisters who he loved dearly. He was involved in Cub scouts and had the opportunity to play little league baseball, which he fell in love with. Wyatt knew his body was failing him. He was aware that he was physically dying and was able to help us make his own end of life decisions.

Imagine, at only 10 years old, knowing you were going to die because the doctors could no longer help you; because they didn’t know how to help you anymore.

Wyatt wanted to be comfortable enough to enjoy the rest of his life, to do things that he loved with his sisters, family and friends. He didn't want to be in the hospital. We worked closely with his doctors to make him as comfortable as possible to give him the time he needed before he was ready to go.

As I sit here now, I am remembering fondly the time we found out that we were having a baby boy, when he was born and as he grew during his infancy. What I thought would be the scariest time in our life and that I was relieved to put behind us, is actually now memories that we cherish. During that time it was unknown to us that my husband and I would later have to bury our dear child, our baby boy. That we would have to talk to him about his death, explain to him what it may feel like, assuring him that we would love him forever and he would always be remembered. I had no idea what it would feel like, as a Mother, to watch helplessly as my son’s organs failed one by one.

Wyatt died on September 27, 2013 after fighting for as long as he could while he still desperately held on to hope for a cure in his lifetime. It was exactly eleven years after we brought our five pound baby boy home from the Neonatal Intensive Care Unit that we would watch him die in our home, surrounded by family and friends who loved him dearly.

Mitochondrial disease is the rare disease that took our son’s life. A disease that even the most astute and educated physicians know little, or even nothing, about. There needs to be more funding for research. There needs to be strides forward in educating and learning about these rare diseases that are shortening our children's lives. I want so badly to help another family avoid the devastation of watching their child die; the helplessness that comes with making your child comfortable from the pain of organ failure, knowing they will soon take their last breaths. The heart wrenching pain of watching their child’s siblings say goodbye as their brother’s heart stops beating. These children deserve so much better! They deserve to live happy and longer lives just as much as you and I.

I can’t express to you how frustrating and defeating it felt to not be able to help our child. To realize the physicians who we sought out and were known as the best in their field didn’t know how to further help our son. To make the heartbreaking end of life care decisions and, furthermore, funeral arrangements for our 11 year old boy. There are no words to accurately portray the deep, unrelenting pain that losing a child has left us with. I often stand over our son’s grave and remember his smile, his laugh, his sense of humor and kind heart. At the same time as I long to hear his voice, to hold him in my arms again or to kiss his cheek.

I’m writing you today to ask for your help. We need your help — children need your help! Simply providing more funding to the NIH for pediatric research, including funding for rare diseases, would be a start. There is much more that we need to know to work towards a cure for pediatric rare diseases, many of which are fatal. Our doctors are doing the best they can with existing information, but it’s simply not enough. We need to do better for our children and their families.

I share our family’s story with you today to make aware the impact that rare diseases can have on families. I’m asking that Congress also work with the NIH to implement the National Pediatric Research Network Act. Any additional structure and funding that could help research institutes collaborate would be a step in the right direction.

While a cure was not to be for Wyatt, I believe there could be further advancements in treatment and ultimately a cure, not only for Mitochondrial Diseases, but for many other rare diseases, as well. But without your support and funding to further pediatric rare disease research there will be other children whose lives will be drastically cut short, leaving behind families who will face the pain of losing their child. Please raise the profile of this issue through hearings, forums and in-district visits with researchers and families. We would like for you to hear our stories. By working closely together, we can chart a path forward to find cures for our children so they have the opportunity to have what we wish for them – long, happy and healthy lives.

If not you, then who? Who will be the one to make a change for these children and families affected by pediatric rare diseases? Who will be the one to provide funding for further research and resources for physicians? Who will take the step to give hope to the children who are fighting to live another week, another day or another hour with only the hope for a cure?

We need to help the families who are living with pediatric rare diseases. The children living with a rare disease, like Wyatt, are counting on you! They are counting on further research of these rare diseases so they too can live a long life, just like you and me.

We sincerely thank you for the opportunity to share our family's story —
Ashley and Bryan DeStephano
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Wednesday, September 10, 2014

We're still here.

It's been sometime since I've written here. For those who follow us on Instagram or even Facebook, you've had the chance to see a little more of what's been going on for our family this Summer through pictures and captions that we shared. It was a busy Summer -- we've been busy redefining our life as a family. It certainly takes time. But we're now back to early rising, after school sports practices and activities and nightly homework before an early bedtime. August came and went and we're staring down the month of September. Beginning a new school year and the current month has hit us quite hard -- as if I ran into a concrete wall.

A year ago our life looked drastically different. Our life felt drastically different. While heartbreaking in its ways, it felt much more complete. Whole. At that time we were unable to ever imagine or feel the way that we would in a few weeks time to now.

I've been reliving much of last year through memories everyday. It's hard not to. The dates on a calendar hold such significant emotions...especially right now, this month. While the decisions we were making for Wyatt were difficult a year ago, it feels even harder to relive it all through our memories: we now miss him so much more. Last September I was memorizing each moment -- each smile, laugh, moan and squeeze of his hand. Every day that he was still breathing. Every hair on his head, each wrinkle and crease of his skin and every fleck of color in his eyes. Now, this September, we miss every little thing about him, all those things I memorized and more. So deeply. 

Life keeps going and going and going. And we have learned to do much the same -- to just keep going. We've continued to celebrate and share Wyatt's life in various ways through the Summer months. Telling his story and sharing his life with our community has meant a great deal to each of us. Most recently, Maggie volunteered to share his story with the crowd during an event that we were a part of, "Stick it to Mito". It was not easy for her, but the speech she wrote and the way in which she spoke of her Brother was purposeful and with grace. I bet he was so proud of her. I know we are. Just as his friend, Emily, said as she introduced our family -- I'm sure he was smiling down on us all.

I have no doubt that I will continue to grieve the loss of my boy for the rest of my life. We grieve because we love and that love will never change. But I do feel there can be an amount of healing in the midst of grieving. It's much like a dance, a delicate balance or an intricate equation. Sometimes it doesn't make sense, but that's okay. It doesn't have to. Life keeps going and so have we: one day at a time we continue living our lives -- with him, for him and because of him.
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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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Our Angel in the Outfield.

Throughout Wyatt's life we've been blessed to meet and become friends with some truly kind and wonderful people. Along the way we've also had the unfortunate experience to meet a few of the opposite kind, as well. But, truly, the good has always outweighed the bad.

Back in the spring of 2011 we had a pretty ugly run in with a tai kwan do instructor whose ignorance was loudly present as he spoke about our son not being welcome in his class. He declared it in front of the entire gymnasium of children and their families. Pointing out Wyatt's illness, his limitations and his insecurities for all to see just as the class was beginning. Wyatt was different, he had tubes, and we were told that was not OK or welcome in this man's classroom. I still get worked up about it today. I won't forget the things he said to me or about my son that day. I can only hope my words or my son being there changed this one man's heart or opened his mind to see the possibilities in all children, even those with tubes and limitations. Though, I realize that sometimes we can't reach (or teach) everyone, no matter how hard we may try. But this experience led us all to much better things. Following this event, Wyatt went on to be included in his first little league team: the Padres. We shopped for a glove, cleats and uniform pants the afternoon before the first practice game. He was so excited! As we prepared, I laughed at ourselves when remembering his ophthalmologist instructing us to avoid all sports that involved a ball flying at his head. (Oops!) I didn't think he'd hit a ball pitched to him that day. To be honest, I was just hoping he'd see it enough to not get hit! But I was wrong - he hit the first ball thrown to him! Following and after being given the 'game ball' of his first game, I asked him "What did you think?" He responded, with a smile as big as it could be, "This was the best day EVER!" 


Last weekend, April 12th, 2014, was the OALL opening day. One of the most fun days of the baseball season. The four of us were there. We walked up the grass hill to the baseball field that is referred to as "the lower field." We watched as all the boys and girls ran onto the grass circling the bases as their teams were announced through the speakers, just as they do every year.


 {Opening day 2011}


This year, as the kids in uniform were lined around the field, with their families standing along the bordering fence, the four of us stood on the dirt in front of the dugout. Wyatt's coach, "Coach K," stood in front of us holding the microphone as he spoke to the crowd about our boy. He recalled how Wyatt became part of the team, watching him hit his first ball, how his tubes all twisted and tangled when he ran and the smile that he always had as he reached the next base. His coach remembered and shared a piece of Wyatt's life with everyone on Saturday morning. It meant so much to us to hear it all.



As Coach K finished speaking, two teams were asked to part in the outfield as a banner along the fence was revealed. It's hanging just below the score board and in honor of our boy. It reads "Our Angel in the Outfield Wyatt DeStephano" with his signature superhero logo in the middle. It's perfect! I imagine Wyatt was smiling so big that day. He would have felt so honored. It was quite an emotional morning for us to be there for opening day again. But it felt so good to remember Wyatt and the joy that baseball had given him the last few years.


Thank you for being there for Wyatt and our family, OALL (and Coach K)!


The last opening day ceremony that Wyatt attended:




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Friday, April 18, 2014

Who's up for a vigilante road trip with me?

So, this year as we were preparing to do our taxes Bryan was procrastinating. Well, a little of that and he just couldn't find the time to sit down to devote to it, but knowing this is the last year that he will claim three children as dependents was also a grey cloud hovering over us. The loss of our child is everywhere and can be associated with nearly everything. Those reminders permeate our entire lives as we navigate through all the 'firsts' without him, even something as routine as taxes.

Bryan finally sat down to complete them last weekend and as he submitted ours electronically the IRS quickly rejected the return. We were informed someone had already claimed one of our dependents on their tax forms this year. Wrongfully, but, very likely, purposefully.  Death records are public record, within those records is Wyatt's social security number. We strongly suspect someone had taken his social security number and filed their tax return before we did, claiming him as their own dependent. We're not alone in having this happen. It's a known crime in this country, apparently.

Why am I sharing this? Well, simply, because it's wrong, because it happens and because it's appalling!

I'm angry at this person -- I want to know who it is. I want to find them myself to tell them of the boy who they are claiming as their own this year. I want them to know him as a person, as a child. I want them to know he was a real boy with a real family...that they are now violating! I want them to know his life and all he went through before his death. If they want to claim him as their own, I want them to know what it feels like to love him so fiercely and then lose him. I really want to show them the face and the life of who they are doing this to. It disgusts me.  

If we have to change the way we file our taxes because of them, eventually needing to "prove" he is our son and to "win" a dispute that shouldn't need to be filed in the first place, they should have to know what this life feels like. What it feels like to love a child, care for him every minute of every day and guide him through his death. They should have to know what it feels like if they want to claim him as their own for the little extra that may come in their tax return this year. 

They should have to know! 

It's all so frustrating. Even if we "win" the dispute, like the person at the tax office put it, I can't help but feel there is little "winning" in this for us. It may be that little would change their greedy hearts, but I still think they should know. Truly knowing and feeling what we have experienced could possibly be worse than any size fine or prison sentence.

This makes me want to go on some vigilante road trip to hunt down the people who do this!

Who's in?! 

I say that more in jest, but there is a part of me that would be all for it. Maybe the most severe punishment for this crime should be to sit with a grieving mother for days. To be made to listen as she remembers her child through stories and their possessions, to look and be surrounded by all the pictures and videos that she goes to when she needs to see and hear her child. 

Just saying, but it's an option I could support!

If they would investigate further to find the person who decided taking Wyatt's social security number was such a great plan, he/she may be sorry. I have 11 years of stories and hundreds of thousands of pictures and video that I would love to share. I could talk about MY boy and his life for days and days. Enough that they very possibly might start to wish they would have had a hefty fine or a prison sentence instead! ;) 
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Saturday, March 22, 2014

6 months later.

It's been nearly 6 months...
since our son's broken body has been healed and he has been running free in Heaven.
since we have seen our son (or Brother) as we knew him.
since the daily life we knew and cherished ended.
since our family changed forever.
since pain and longing entered our life with an intensity we have never felt before.

It's now been (nearly) 6 months since Wyatt died.

This week, as the date is coming closer each day, it has been weighing very heavily on my heart and mind. The 27th of every month is a day that we all are keenly aware of in our home. Jilly has declared it to be the official "SuperWy day" and marks each month of her calendar that hangs on her bedroom door with Wyatt's superhero symbol. She keeps both a purple and green sharpie marker attached to the calendar for this purpose, and for crossing off each day leading up to it. I can't speak for the rest of my family, but this month's passing seems to carry more emotion for me. Six months sounds like a long time. In fact, it's half a year. It sounds like enough time to figure out a "new normal". It sounds like enough time to do a lot of things. Yet, I'm sitting here now, six months later, thinking of the time that has passed since holding my son for the last time and feeling much like I remember those days and weeks after. The feeling is still so raw. Little has changed in that regard.

Right now, I could say "Wow, it's been six months...", emphasizing that it feels like such a long time. Too long of a time. But I could also say "Wow, it's been six months...?", emphasizing that it feels like it could have happened just yesterday. Both would be accurate. The amount and feel of the time that has passed is conflicting in and of itself. Shortly after his death I wrote a piece titled "Everything changed the day Wyatt died." That title holds true...everything did change. Physically and emotionally for all four of us. We each changed individually. Our family, as a whole, changed. Our home changed. Our relationships changed.

Everything changed and nothing would be the same again.  

Those changes have been very difficult to absorb and adjust to. We celebrate the fact that Wyatt is free of the body that caused him such pain and discomfort. That his body is now whole and he is waiting for us in Heaven. Our faith is very strong. But we still grieve the enormity of this loss in our lives.

As his Mother and primary caregiver, my life stopped where it was that Friday in September at 5:42pm. I have longed for the days before that time every day since. I'd love nothing more than to sit at the table and look across the room to see him sleeping again: when I close my eyes I can picture him and all his things across the room, just as if he is really there. I miss hearing his voice. It's as if I can hear him when I stop and listen. It can sometimes sound so crisp and clear. I especially miss the feel of his arms around my neck or holding his hand: my body remembers the feel and weight of his body so perfectly. I miss the smile he would give me when he knew he was being ornery and difficult. I miss his jokes, his sarcastic tones. I miss him tagging me to play another round of the game even at his weakest. I miss taking care of him. I miss my son and everything that encompasses having a boy in our life. Six months later Bryan and I wake at the same times through the night as our bodies still work around the strict schedule of his medications. We're no longer startled awake by the different alarms from a ventilator, a pulse-ox or IV pumps...but as I lay awake some nights I can still hear them.

I don't believe I have ever known the truest meaning of 'longing' for someone or something until the last six months.

After the girls leave for school and Bryan to work, my days are often quiet, but I have a routine now. I have things to do. Routine is a good thing, but I still hate that I have to have a new routine at all. Some days are busy and distracting, some seem to carry a little hope, a bit of peace and a small amount of acceptance, though there are others that are still not much easier to get through (for any of us) than they were months ago. Some days I just simply need to feel what I'm feeling.

Six months later we are still trying to make sense of what happened. We are each still processing. We are still figuring out just how to keep going, together. I can tell you, this week particularly as the 27th comes nearer, I'm tired. I'm feeling emotionally spent.

Somehow, six months later, this life can still feel surreal at times. There are days that I am overwhelmed by it and look around our home at pictures on the walls and I can still find myself thinking "What happened?" Or when I stand at my son's grave and look down at all the tokens of love left for him, I still question "How can this be?" Some days this doesn't feel like our life at all, routine or not. I'm here, I'm present and I'm all in...but it doesn't necessarily feel like mine every day.

Six months later we miss Wyatt terribly, we are all missing our life together as a family. We don't feel complete. But the days have continued on, whether they can be labeled as good or bad. The girls have been busy with after school clubs and/or sports. Bryan and I have been shuttling them to and from each. I'm not sure that saying Bryan has been "enjoying" work each day is exactly accurate...but he's been working and busy. We talk of and remember Wyatt frequently. We're looking forward to Wyatt's memorial stone being put in place at what we refer to as "Wyatt's place" sometime this spring, once the winter weather is gone for good. In some way, I feel having that in place will be a relief. That being one of the last things that we can do for him and that will be "his."

I've talked about it here before, as Wyatt's life was coming to an end -- I believe we all have so many choices in our lives. When Wyatt was with us we made the choice to live with our son and not only wait for him to die. We chose life together. To experience what we could, while we could. In these 6 months I've realized we still have that same choice, but it's of our own this time -- I can live my life or I can just wait for it to be over. I may drag my feet some days, maybe even kick and scream a little (ok...not really.) but the truth is, I am choosing to live my life.

There is a lot of life left to live ahead of us. We know this. We see it and we've been working on jumping back in one small step at a time. In these six months we have smiled again, we have laughed. We each have things that we look forward to. I have chosen to not stop or stand still in my life. That's not what Wyatt wanted for his and, I know, it wouldn't be what he would want for our lives either.

Our boy was all about the fun and adventure of life. He pushed the limits in more ways than one. We took chances together and hoped for the best. He didn't let much get in his way, a failing body or not. Six months later, I hold dear to these pieces of him that helped us keep going through his sickest and darkest times. Sometimes those pieces of him, those little lessons of life that he instilled in our hearts, are buried deep in the pain of loss...but once I dig and sort through that pain they are always there waiting for me. So, six months later, our emotions are still raw, the pain is always there and there is an empty feeling that follows us. We're still trying to figure out how we will live a life in this way. But Wyatt has given us a gift (one of so many), by teaching us how to be happy and to find happiness even in the midst of some of the very darkest times.

I can say, in the last six months, we began to learn how to be happy in sorrow and to be thankful in grief. We certainly have not perfected it and some days may be harder than others, but we're striving for and working toward it every day.


Wyatt,
My dear boy, I miss you more than I've ever imagined possible. You are still, and will always be, my very favorite superhero, my very favorite boy. 

Thank you for simply being you.  

I will love you forever,

Mommy 

P.S. - With all my love: tag -- you're it! 
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Monday, March 17, 2014

More than just a memory.

Last weekend, Sunday afternoon, the four of us attended a remembrance service of all the individuals who were part of our hospice care team and died in 2013. We first sat in the pews of the church listening to music coming from the harp that was being plucked ever so carefully on the front steps, just in front of the alter. I looked through the bulletin that I was handed as I entered. It was titled, "Service of Remembrance". The front of the bulletin had a whispy picture of a hand holding a wand, as if it was orchestrating the one small being standing alone amongst the clouds. I flipped through its pages, partly wondering what kind of service this would be until I got to the list of names. Then I saw his name, my son -- Wyatt DeStephano. Tears flooded my eyes quickly as I blinked them back. I watched as Jilly circled his name and drew pictures around it with the pencil that she held in her hand. As the service started I found myself unable to focus entirely on what was being said. Scriptures from the Bible were read, songs were played, hymns were sung. We read responsively pieces that spoke of remembering our loved ones. I tried to blink away as many tears until I couldn't any longer and they fell freely from my eyes and further down my face. It didn't take long. Seeing his name took all the strength from me. Seeing my sons name in print as just another person to remember. Just another person who died last year. As if he's only a memory now.

But he's so much more than a memory. He's so much more than just another name in a list of deaths from the year.  He's so much more than another individual taken care of by a Hospice company. He's so much more than a sick child that died or his disease that killed him.

He's so much more. 

I looked around the room at the other families, most who were years older than ourselves. Wives or Husbands who lost their spouses, or grown adults who lost a parent. Then there was us. The parents whose child died and the two young girls who watched their Brother die. It didn't feel like we necessarily "fit" in this crowd. Much like we feel in our day to day lives. Feeling alone, but together. We're not really alone in any of this...we've never been. But there is such a void in our home and in our family that it feels very lonely. Empty, even. Like Jilly has explained in the last months, it feels like there is a big hole in the middle of her or as if her heart is empty. Bryan and I are living out many parents worst nightmare, the loss of their child. My family sat beside me in the church, but we weren't whole. I don't know that I will ever get used to only seeing four of us.

Reality is not kind nor soft when it shows up. It certainly has its way.

The people attending the service were grieving the loss of their loved ones, just as we are our son. I could relate to their feelings and their pain, but there was a part of me that felt I couldn't quite entirely. There was a part of me that wanted to get up and walk away from all that was happening in the church that afternoon. I know I'm supposed to look back fondly on the memories we have with Wyatt and I do. I do, so often! But sitting in that sanctuary with families who were grieving the loss of their much older spouses, loved ones and/or parents, I couldn't help but recognize all the memories that were supposed to be. All the memories we didn't get the chance to see, to experience or to have because Wyatt didn't get the chance to grow up. In that moment, I could see all the life that was taken from him. As I sat in that pew in the sanctuary on Sunday afternoon, all the life that had been taken from the four of us was all around. His dreams of friends, sports, school dances, graduation, a girlfriend, college, of getting married. Dreams of what he wanted to be when he grew up. Wyatt dreamed of a life. Maybe it wasn't the life that God had created for him, but it was the life that he and we looked forward to.

I was, admittedly, feeling so different than the families sitting in the church with us that day. While I can't imagine what it feels like to lose a spouse or a parent, we lost our child. Our son never got a chance to grow up. We didn't get the chance to watch him live a life like he dreamed. And now his name is printed among others as a person to only be remembered, yet he will always be so much more than just a memory to us.  
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Wednesday, March 12, 2014

The Best Super Brother Ever!

The Best Super Brother Ever is the title of a biography that Jilly wrote in the most recent Young Authors club at her school. This afternoon, being the last of the club meetings, we were invited to celebrate their writing efforts and listened as each child stood up to the microphone to read their own piece. I, not so surprisingly, cried through most of my time in the school. (And that was even with being forewarned of Jilly's choice of writing. Just imagine what I would have been like had I not been prepared. Yikes!) We're so proud of her and would like to share what she created with you too.


)



 The Best Super Brother Ever!
By: Jilly DeStephano


My Brother, Wyatt Daniel DeStephano, was the best brother I could ever ask for because he was SUPER! He was born 14 weeks early. His first words were counting from 1 to 20. Wyatt was very excited to have a baby sister! He actually helped name me! I was supposed to be named Jillian, but Wyatt always added the "ana" on the end, so my name is Jilliana. He loved to put his finger out and I would hold it. Once Wyatt elbowed me in the head when I was a baby, Mommy cried because she was scared I was really hurt.

Wyatt's favorite teachers were Dr. Evans and Dr. Bright. His favorite sport was baseball. He played for two years, one team was called the Padres and the other was the Giants. He had an imaginary girlfriend and her name was Lydia. My Brother's favorite present on his 7th birthday was going to Dutch Wonderland. Wyatt and I would put on the circus afros and play Just Dance! His favorite song was "Move it, Move it." Tag was his favorite indoor game. The hair do he liked the most was a faux hawk. We used to like to go up in the attic and play. My brother was awesome! 

Wyatt had a disease called Mitochondrial Disease, which made my brother weak. He stopped walking when he was nine years old. My brother had to have nurses come to the house. His favorite nurse was Jason from duPont. Dr. Raab was Wyatt's favorite doctor, but when he said Wyatt had to stay in the hospital he called him "Dr. Craaby." Miss Jen was his social worker "fairy" who had magic powers to get him out of the hospital. Wyatt chose to stay home with his family, rather than being in the hospital. 

My brother was special to me in so many ways like he always taught me to be strong and brave. He loved me so much! He was always sooooo brave through all of his medical stuff. He was a great big brother and I love him. We had lots of adventures together. On September 27, 2013 he went to sleep and woke up in Heaven. 



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Tuesday, February 25, 2014

A competition of life.

I believe everyone has a purpose in their life. Not that each person in this lifetime will change the world's views or be talked about for hundreds of years and go down in the books of history. But a purpose that lies within them, that touches people, maybe teaches people, maybe helps people. Life is so individual to each person, even siblings. No two people are ever exactly alike. They will never exactly feel, see or experience things identically. I don't know that an individual's purpose in this life is ever the same. I think they must all be different in some ways, just as the person themselves.

But if that may be true, then why is life so often a competition among us? Friends? Co-workers? Family? We've all seen it. You can't really deny it. I'm sure, every one of us has even engaged in it at one point or another.

A competition of life. 

Who is more successful, makes more money, has the biggest house or most expensive cars. Who wears the trendiest clothes, takes the most elaborate vacations, is the most attractive or is liked and respected the most in a group. Going after the biggest. The newest. The best.

Some would say it's just life. It's natural. It's human nature. Or not. I, personally, think there is so much more to life than living this way. Why do some feel the need to be the most recognized, the most loved, the most sought after...being the best? Unfortunately, this competitive vibe transcends through the parenting communities too. Someone always feels they know the best way to parent, teach, discipline or care for their children. Or feels the need to have the cutest, the healthiest, the smartest, the most athletic, the funniest, the most loved or sometimes even the sickest child.

Why do we do this?

What happened to just being content and happy with who you are and what you have? There is more to life than this. Our lives are all unique. Our children are children. The most important part of their lives is that they feel our love every day. Certainly, instilling in our children the drive to do their best and put forth their best effort is a great thing. We can certainly put forth our best effort in our lives, we can strive to better ourselves without comparing or competing for some fictitious recognition. Or perhaps we're competing and comparing for only the peace within our self. That we are enough, our children are enough, our choices are enough. Maybe that's where the competition is born from...from within ourselves, our insecurities, and nothing more.

There is certainly no trophy at the end of our life or our child's life that says you were the best. There is no medal of honor. There is no award to be given.

It saddens me when Mothers, who undoubtedly love their children, continue to act as if they need to prove that their child(ren) are "better", in whatever way, than another. Sad for them, for their child and for the way they must feel.

In the special needs community, the mito community even, this mindset can also be ever present. It was so, so often a very supportive community for our family and still is. I've come to know many wonderful people and families by way of this disease. But I have also seen when some get caught up in a circle of behavior that does not feel necessary. Everyone has their struggles. Everyone has their fears. Everyone preaches the same feelings about needing a cure.

This disease has the ability to be devastating, I've seen that part of it first hand. Though, it's different for each child and family. It's entirely unique to each individual. There is no competition, there is no race. It's a life. It's up to you to make it one with love. Be secure in knowing the amount of love you feel for your children. Be secure in knowing that your child mattered immensely to you and those closest to them. That's all that really matters. It's what is most important at the end of the day.

This little spot in the blog world, though it's not always the most upbeat, is honest, is real, is the truth to our life we have lived these last years. I believe everyone has a story to tell. Everyone has a purpose. I have rarely held back when sharing our life here. It's a beautiful life that we are so fortunate to experience together as a family...the good, the bad and the ugly. Being honest in this space is important to me. It's our life, but it shares Wyatt's life too. His life, though it had its excruciatingly difficult moments, was more than the disease within his body. He and his life were so much more than being another child with Mitochondrial disease. Your children are no different than mine in that way. They are more than their diagnosis and their limitations. They are children first.

I don't believe this life is meant to be a competition. I'm sure there will always be that one person, or those few, who are seeking for something within themselves that being the best won't even give them. But it doesn't mean we, you or I, have to play along. My family's life is one of its own. It's not always pretty and it has not always been easy, but it's ours. Your family's life is just that, as well. Our lives don't need to be looked at so intensely and dissected into who is "better" or "more" than the other. There are no winners and there are no losers in the end.

Our children are all special and one of a kind. They are enough, they are just right, they are exactly how they were meant to be. Love them for who they are, show them love, never stop loving them. 

Be thankful. Be content. Be true. Be happy. Be kind. 

Let it be enough. You are enough.
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Sunday, February 23, 2014

Standing in the rain.

There's snow on the ground as the sky begins to grow dark. The clouds roll in. The branches of trees begin to sway as the wind's speed picks up. You can hear its force from inside as it blows against the windows. It begins as a slow drizzle. A rain drop here, a rain drop there. The sound is audible as the drops hit the ground. Then it's as if the sky opens up allowing the rain to come pouring down. Quickly it washes over everything in its path. As the rain pelts the snow it causes it to melt, creating more water to wash away the cold.

Sooner or later, spring will be coming. It's only a matter of time.

I've watched a small storm like this show up just outside my home late last week. It's interesting really. As I watched the changes taking place in the weather I couldn't help but relate to it in a much deeper sense. Grieving feels much like this. It actually works so similarly...at least in my head, it does. Sometimes there are snow showers, sometimes rain showers or even loud thunderstorms that shake the foundation on which we stand.

The snow on the ground is much like the chilly feeling of loss. There are moments the sun may be shining, but the chill, the emptiness, is ever present. The clouds of loss are saturated with feeling. Sometimes they roll in slowly, other times very quickly without warning. They may settle in and darken the day(s). The winds blow, leaving the feeling as if you are pushed and pulled, gently or even ferociously. The rain begins to seep from your soul, maybe slow or maybe steadily. Maybe just before losing all sense of control as a storm of pain begins to pour down. You cry out. You cry from deep within your soul. You may get angry, releasing a crack of thunder that shakes you from the core. The torrential tears help to ease the pain of the cold snow over time. Some days, eventually, the rain drops slow and the clouds may gently roll away...but not too far in the distance. They are always visible and their path unpredictable. The chill is still there, it may never go away. But you can begin to see and feel the warmth of the sun starting to peek from the break in the cloud covered sky. It may not be as bright or warm as it once was. Maybe it will never be. But the promise is still there. 

There are days when the sun may warm our soul. There are days that we experience a steady rain. And there are the days that a large storm blows us right off our feet. Interestingly enough, there is sun, rain and storms throughout the entire year. Each being a little different depending on what season we're in at the time. But yet similar, none the less. I'm feeling like it could be very much the same in these seasons of our lives.

Even though snow still covers our ground. I believe spring is coming...for the world, my family, myself. It may not be on the same time table, but I know spring will come eventually. 
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Saturday, February 22, 2014

Here's to the crazy ones.

"Here's to the crazy ones.
The misfits. The rebels. The troublemakers.
The round pegs in the square holes.
The ones who see things differently.
They're not fond of rules.
And they have no respect for the status quo.

You can praise them, disagree with them, 

quote them, disbelieve them, glorify or vilify them.
About the only thing you can't do is ignore them.
Because they change things.
They invent. They imagine.
They heal. They explore. 

They create. They inspire.
They push the human race forward.
Maybe they have to be crazy.

How else can you stare at an empty canvas and see a work of art?
Or sit in silence and hear a song that’s never been written?
Or gaze at a red planet and see a laboratory on wheels?
While some may see them as the crazy ones, we see genius.

Because the people who are crazy enough to think they can change the world,
are the ones who do..." 


-- Jack Kerouac

I came across this piece a few days ago. It simply made me smile. Gosh, to think just how many people considered us "the crazy ones" through the last couple years. I would never claim to be "crazy" in the way that I will be inventing or changing the world like this refers to. More in the way that we made a difference...maybe not to anyone other than our little family of 5. But, to my son we changed his world. 

When we brought him home to live the rest of his life. When we gave everything to accept the risks and responsibility of the intensive care in our home. When we stood up for him. When we fought for him. When we took chances to give our children the opportunity to experience life, as normal as we could make it, together. When we celebrated every small victory. When we loved him through his death. 

I could happily accept this kind of label, because I know by being "the crazy ones" we were able to change our family's life for the better. It changed my son's world. That's enough for me. 

And, of course, we were backed up by a small team of "crazies" all their own. (You know who you all are...) No, we were never alone. Those who were there day in and day out if and when we needed something. Those that laughed with us. Those that even cried with us. Those who pushed the limits and bent the rules with and for us. Those who followed and/or guided us when we needed you. You changed our world, so that we could change our sons.

So, here's to the crazy ones....
You can praise them, disagree with them, 
quote them, disbelieve them, glorify or vilify them.
About the only thing you can't do is ignore them.
Because they change things.  :)
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Tuesday, February 18, 2014

100 days of happy.

What does happiness look like to you? What makes you happy?

Am I happy? Well, Yes and no. I'm a generally happy person in life. But it takes a good bit more effort and work to be fully happy right now. I've been ridiculously emotional the last few months and it probably goes without saying that happiness has not been the front runner of those feelings. With that being said, there are a lot of things and people that make me happy.

As I continue redefining my life since Wyatt's death I feel more in touch with what truly makes me happy and what really does not. Sometimes it can be the simplest of things that creates a genuine smile to appear on my face. For the next 100 days I will be sharing pictures on Instagram of things that make me happy. One picture a day. Or if by some chance I get a happy overload, maybe it will be two or three. Who knows.

I could certainly use a little more happy in my life. But lets be honest, who couldn't benefit from a little more happy in their days? Is there really such a thing as too much happiness? I certainly don't think so! I do believe there can be beautiful and even happy in the midst of the intensity of grief when losing a child. It's here somewhere and I'm going to find it.

Do you too need a little more happy in your days? Join me. Find, take note and feel what makes you happy each day. Can you find your own happy 100 days in a row?
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Monday, February 17, 2014

I have three children.

I have three children. 

Well, it feels like four sometimes when you take into account my husband...but that's only every once in a while. :) But I gave birth to three children.

Since Wyatt died I struggled to give an answer when asked the question, "How many children do you have?" And the next one that usually follows it, "How old are they?" I would cringe a bit when I heard them coming. These types of questions can even keep going, "What grades are they in?" or "What schools do they go to?" It's surprising how many people ask sometimes. I guess I just didn't take notice before because I was happy to answer. It once felt much easier. In the last months I have fumbled over my words and was not feeling sure of the best way to respond, both for my sake and others.

We will always be a family of five. I even found myself typing that in an emailed response today when asked how many in our family would be attending an event -- 'There will be five of us attending', I typed initially. Just as I completed the last word in that sentence I caught myself and had to backspace to correct my error, 'There will be four of us attending.' 

Yes, we will always be a family of five. Except to the outside world, they now only see four.

2+2...doesn't equal five. 

 But, I'm choosing to always give the most honest answer to those questions that seem to pop up so frequently when making small talk.

"I have three children. Maggie is 12, Wyatt was 11 and Jilly is 8."

And as they realize what I said and ask further questions, or then feel sorry for our loss or very possibly even sorry for bringing up the subject at all, I will be ready to tell them of a really awesome boy that will always live on in the hearts of those who loved him.

We will always be a family of five. Perhaps, there are times that 2+2 can equal five. In the words of that really awesome boy, "anything is possible..."
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