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.

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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