Wednesday, September 28, 2016

Grateful is my heart, for every day.

I'm not sure where to start as it's been a year since I sat at this spot and typed out what life is like for our family. Once a place I often sat, writing updates and giving glimpses into our home through words and photos. I wasn't planning to write, but it feels like home to write about my boy on the third anniversary of his death.

Some families like to use the term "Angelversary" for this date...maybe it helps to soften what this date really is? But there is something about that word. It's just too 'light' and 'cute' for something that is most certainly neither of those things. (And I'm pretty sure Wyatt would not appreciate 'cute!') We like to call this day, most simply, "Wyatt's day."

So, here we are. Another year has passed. It's been 3....3 complicated years. Through Wyatt's last years I often related our family's life to feeling like a roller coaster - the highest of highs careening to the lowest of lows, mixed with twists and loops in every direction. Roller Coasters were one of Wyatt's favorite things, which I always found pretty ironic. But through it all, we learned to embrace every high and every low for what it was, and I think we did ok.

I was expecting as Wyatt's life came to an end, and as we navigated through grief, that we would eventually fall into more typical days. This was one time I was striving for "boring!" All I can say is (and I've said it a lot recently), God has a lot of explaining to do when I get to Heaven!! Our life has yet to reach "boring", in fact some months or weeks it feels pretty darn close to the very same roller coaster that we were riding with Wyatt. It's now a little more difficult to not feel terrified with each twist and loop and especially with the lows, but thankfully, the high points are still pretty great.

I feel like I've often said when writing here before, that I don't quite understand why, nor do I know exactly what God has planned for our lives. But I have faith that one day it will make sense. I still believe that, I cling to it some days. I have found myself saying under my breath on more than one occasion the last few years, "This isn't fair..." and I believe a number of people would agree with me in saying it's really not. But I think God knows that too and I look forward to the day that he will sit me down and explain it all until it makes complete sense. Though, with all that being said, for every one of the days that I'm left on the verge of a breakdown and asking "Why?", there are triple that leave me saying "Thank you..."

Grateful is my heart, for every day. For each that have passed and those yet to come.

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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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