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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Saturday, February 8, 2014

A "Hi" from a distance will have to do.

Last weekend, as the pinewood derby was wrapping up, an elderly woman approached me. We had just come off the stage from accepting the award. She held my hand, looked into my eyes and she shared that long ago she too lost a son. I'm going to take a guess that this sweet woman was possibly beyond 80 years old. She walked precariously with a cane and spoke quietly to me. She told me she was looking for my son that day, my boy in the wheelchair. She didn't know he had died until they began to speak about him. Her son was 17 years old when his life was cut short by a motorcycle accident. As she explained I could see the pain in her eyes to this day. We shared the pain of losing our sons, even though it was by very different circumstances. She looked into my eyes with tears resting on the brim of her own, and confided in me that this is not something that she or I will ever heal from. Her heart was broken at the loss of her child still, it was evident. She spoke from experience. I appreciated her talking to me about her son. I just wonder, after so many years passed, how often she or her family talks of him and says his name out loud in conversation.

Losing a child has changed me. How I view things, what I feel is important and what really is not, is all different now. Wyatt changed our life when he was born and he changed our life again when he died. It's as if the moment Wyatt took his last breath our life was split into two different time periods. There is the "before Wyatt died" and there is the "after Wyatt died."

Some days I really just need a "time out." To push the pause button for a few hours while I gather my thoughts and process them into something I can understand. But, unfortunately for me, time will never stand still and neither will grief. There is no pause button and certainly there is not an easy button like the Staples store advertises in its commercials.

If only! 

Instead time feels to zip by me at warp speed some weeks. As if I'm left spinning in circles as it passes by me so quickly. I try to focus and look around, but can only see the swirly images of life around me. Like a dense fog or an unfocused picture where you can vaguely make out the scene but are unable to focus on any of the details.

Though, on the other hand there are moments of time that also feels as if it slows to a snail's pace. Keeping me in one place. As if I'm stuck to the ground and left wondering if I will ever be able to move freely again.

I have a confession to make, I long for the day I will go to Heaven. To be with my son and relieve my soul from the constant ache. I feel torn between wanting to be there and needing to stay here. I don't mean that in a way that you should worry about my safety. I promise, I'm ok. I realize that this may sound crazy to some of you. In fact, I think it may to a lot of you. But it's the truth. And I'm fairly certain that if I'm feeling this way then I'm probably not alone and there are likely others feeling the same. 

I recently returned to and walked into the hospital for the first time without Wyatt. Before the girls and I sat in the waiting area together, I answered all the secretaries questions as if it was our first time ever being there. She had no idea. It was only a minute or two after we had checked in that one of the nurses came out of the doorway to call the next patient's name, "Wyatt...?" Instinctively I looked up. I glanced around to see who responded to the name, while blinking back my tears that were eager to fall. We were eventually called back to the room and did what we were there to do and returned to the waiting area again. As we sat back down it happened again, this time it was just across the room coming from a different area, "Wyatt...?" The girls and I looked at each other and around the room, as I whispered out loud, "Really?!" At that point I couldn't help but think of the countless times we sat in this same waiting room before, waiting with Wyatt, and never once has his name been called for a child other than himself. What are the odds? Just before we were given the okay to leave another name was called, this time it was Bryan. Maggie just laughed. 

On our way home we drove by the cemetery, the surrounding trees were sparkling as the sun shone through the thick coating of ice on the branches. Our area had both a significant snow storm and an ice storm this week. There are large branches down and the entrance to the cemetery was not cleared of the deep ice covered snow. But I stopped just in front of the entrance and the girls opened the door and stood up on the frame of our car trying to look past all the other stones in the cemetery to see Wyatt's spot. Jilly suggested we park the car (in the middle of the road) and walk into him, but I countered that suggestion with the intentions of coming back in a day or two when maybe the snow would have melted some. A "Hi" from a distance would have to do.

A "Hi" from a distance will always have to do for now.
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Monday, February 3, 2014

A weekend full of emotion.

Within the last several months we've been contacted by many who have been inspired by our son and his life. Thank you. Receiving these messages are so touching and heartwarming. Wyatt touched the hearts of many. He led a purposeful life by just being himself and it's been clear that he left behind a legacy that is strong. He lived a full life in only eleven years...he somehow knew just how to enjoy it despite the challenges that were placed upon him. I'm not sure how he did it sometimes, but he did. We were witnesses to it.

He was amazing. 


On Saturday we attended the 1st annual Wyatt DeStephano Memorial Pinewood Derby. It was such a thoughtful tribute to our son and we were honored to be present. As we walked into the large gym at the family center we were greeted with a framed picture of our boy. Sitting on the table next to his picture was a large donation jar: the donations from this day will be going to the Hospice center that assisted our family through the last two years.

Wyatt really enjoyed being a Cub Scout.


When he first came home from school wanting to join scouts Bryan and I were a little hesitant. We knew what was involved, including hiking and camping. We joked that when camping he would need to pull along his own little generator behind his wheelchair to run the equipment he needed to sleep. But whatever it takes! Bryan talked to a few local packs and the Pack 20 leaders were the first ones to respond assuring us that they would help in whatever way we needed them to to make things work. That was all we needed to enter into the scouting world.


The picture above is what it's all about, in some ways. Wyatt's in the middle of that pile of boys, wrestling, after a den meeting. A double lumen PICC line in his arm and his drain bags and tubes in there somewhere too. The glasses on his face being the least of the worries. He was a boy first, regardless of his medical needs.


Wy loved all the activities that cub scouts offered and never hesitated in joining in. This past Saturday afternoon the Cub Master stood in front of all the families and spoke candidly of our dear boy. We then were presented with and accepted the Spirit of the Eagle award on behalf of our son. To say it was a little difficult to attend the event and stand on the stage as Bryan spoke to the group about our boy would be an understatement. But Bryan did a great job conveying what this pack of scouts meant to Wyatt and expressing our thanks.


I know Wyatt would have been so proud of it all.


To make the weekend an entire emotional debacle, on Sunday we decided to take a step up that seemingly giant staircase that is laid out before us and we went to the movies. Jilly has been asking to see the new Disney movie, Frozen.


It sounds pretty simple, right? To go to the movies. At one time it was, but we haven't been back to the theater since Wyatt died. We watched a lot of movies the last few years. It was an activity that Wyatt was always up for regardless of how terrible he was feeling. Something silly he really enjoyed, even the last times that we were there, before the movie starts there is a movie reel that simulates riding a roller coaster.

Like this:



Wyatt would raise his hands in the air and whisperly "scream" as if he too was riding the coaster. If there were people in the theater with us he would only raise his hands half way and make a nearly inaudible "scream".  It was so silly, but he did it every time.


I could say I had a great time seeing Frozen, but I would be lying through my teeth. Truth be told, it wasn't fun. I didn't really expect it to be, so there was no surprise there. In fact, my experience was much like the holiday chorus concert. I was the one in the theater, sitting at the end of the row, crying before the lights dimmed and the movie even started. Yep, that was me.

I could list off a few things that started my tears, but the biggest being this time we were all sitting together, just the four of us. I wasn't sitting next to Wyatt in the wheelchair accessible seats, while the other three sat in the row behind us. I didn't need to make sure I had access to his equipment to silence them quickly when they began to alarm or to keep an eye on the amount of oxygen he had remaining. Then as the previews began to play I could imagine exactly what he would say to me, reminding me to silence my phone or telling me "We need to see that!" after every snippet of the next up and coming movies. I gave up on wiping my tears away as it was clearly a lost cause at that point. The movie itself was cute, the story was good, the music was nice. The experience was...well, draining, I guess you could say. But we made it through. It was just another cracked and wobbly step.


It was a weekend full of a varying range of emotions. I'm so, so proud of Wyatt and the legacy he left behind. I'm also so grateful to have the abundance of memories that often breaks my heart again and again and again. At the end of the movie it's found that love is the answer. All you need is love. I believe that to be true. It could be said that the last years we were sustained by hope and love. And now the resulting tears consist of love. My ridiculous amount of tears are made of love so powerful and so pure.  If love wins, Wyatt's life was a blowout.

Today I'll happily accept the quiet snow day that is happening as I write. I've got a batch of apple crisp being made now and the snow is, once again, piling up quickly outside. And I've got a date with the treadmill. 
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