Thursday, September 10, 2015

Two years.

Later this month will mark two years since Wyatt's soul left his earthly body and he finally made it to Heaven.

I've been reading through my posts from two years ago every so often the last few weeks. Taking myself back to that place of waiting, watching, wondering what our life could ever be like without our boy and how I would ever survive to find a way to live without my son. I was heartbroken then and it can be said that I am still now.

Though, this last week, I recalled on Facebook Wyatt's faith and his yearning for Heaven in the last leg of his journey with us. His encounters with family members and the moments between he and Jesus that he was able to explain to us in vivid details. But the most poignant moment being when he saw Heaven. It seems to me much like being invited in to a secret club, to be given that small glimpse. I remember his words, the certainty and excitement in his voice as he couldn't wait to tell me, "It's real!"

My heart would never truly be prepared, but he was ready to go.

With that being said, some may remember, it didn't quite happen as quickly as we all expected, but additional time together was never a problem for us. Sixty-eight days following his glimpse of Heaven his broken body would quiet and he was free.

As my heart crumbled to pieces and the pain of losing our son began to quickly overtake our bodies, I didn't know what to do or where to go or how to survive. I remember thinking repeatedly, "What now?" I was free falling into a deep dark hole.

That evening, after his body was moved from our home, I sat on the edge of our couch, not moving and staring into the wall. My mind was racing, yet empty at the same exact time. Feeling the shock of what we worked so fervently to avoid for so many years. Our son was gone, his body died.

That was two years ago. 

We're still here, the four of us. We did, indeed, all find a way to survive. Somehow it happened, merely one breath at a time. In those two years so much has changed for us. Life is always changing, and, I suppose it could be said, will be ever changing. In those two years we have since learned how to live our lives with an insurmountable hope and even joy, in the presence of pain and loss. We realize Wyatt taught us exactly how to do this!

Wyatt is in everything we do. We feel and share his love in different ways each day. We honor him and his incredible life by simply continuing to live ours. Following our hearts, enjoying every moment, seeking happiness, showing love and purely celebrating life.

Let's be real, there is not a day that goes by that I don't wish our reality differently. Sometimes life just doesn't feel fair. (Oh, I could tell you the ways our life has not been fair!) But it's ours and I've come to own it as such. Even with all the imperfections that may be, I'm in love with our family's life together. No matter how short or unfair it may feel sometimes.

Our family of five may not look like others and that can be OK.

We know Wyatt is always with us. He has certainly let his presence be known in more ways than one! That's my boy. My middle child, never wanting to be left out. ;) While that can't always take away or negate the pain of losing him, and the ache of milestones and experiences missed because of his death, it does give me hope that one day we will be together again. Our Faith and his love has gotten us through every day of the last two years. In fact, some days it feels as if it's the only thing we have left to lean on, but they have never let us down. 

The love I have for each of my three children is as strong as ever. While I grieve the loss of one of my three, I'm most certain my love is deep and strong enough to reach him in the depths of fun that Heaven holds.

I will love him forever - that was my promise. Always to be my very favorite superhero, my very favorite boy.

 Wyatt Daniel DeStephano
 July 23, 2002 - September 27, 2013
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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 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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