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.

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,


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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