Tuesday, November 26, 2013

Letting go to move on.

This week is two months since Wyatt died. We finalized the design and details for his memorial stone a few weeks ago. It's special -- I think he'd like it. I'm looking forward to seeing it in place. But it probably won't be delivered until spring due to the weather. I visit the cemetery a couple times a week still. It's cold and windy on the hill now. The leaves fell off the trees, the grass is brown. This last time I just sat in the car, staring at the dirt that lays on top of him. Letting go hurts.

Accepting, letting go, moving forward. 

It's all hard. I feel like I've said "It's hard." at least a thousand times within the last months. I dislike the phrase "This sucks." It's actually not a phrase that we 'allow' in our house. But sometimes there is no other way to say it. So, for the sake of honesty...

This sucks.

Watching him die, grieving, missing him.

It all sucks. 

There is a lot I could say to tell you how I'm feeling 2 months later. Some days are better than others. But that little phrase that I don't particularly care for pretty much sums it up.

There was a moment the day Wyatt died that I laid beside him and began talking. My words eventually turned to tears and apologies for all the things I felt I didn't do 'right' as his Mother. I wanted to help him. I wanted to make him better. I wanted so badly to make his body work. I wanted to trade places with him. I wanted to save him. I tried so hard, but I couldn't. I didn't know how.

I failed him. 

I felt like I failed him as his Mother. He looked to me to protect him, to help him, to find someone to help him. I've been assured that we did all we could do. And I think I know that. I believe it. But other days, my broken heart starts talking for my brain and I can't help but think of the things that I could have done differently or maybe didn't do well enough.

Did I advocate strongly enough for him?
Should we have waited longer before doing this procedure?
Or did we wait too long before doing that one?

I realize these thoughts are purely emotional because when I look back on it all and think about what was happening, I know we did what we had to do at each of those times. It can be so easy to look back on a situation and say you'd do a hundred things differently. But I must stop doing that. I need to trust what I know and let go of those worries. It's not easy. In fact, it's easier said than done.

But if we never let go, we'd never move on. 

The Holidays are quickly approaching. The commercials on TV, the songs on the radio, the catalogs that are showing up in my mailbox and the emails showcasing the big sales of the week. It's impossible to hide from it this time of year. Thanksgiving, Christmas and then the new year...it's a favorite time for a lot of people. But this year I would like to boycott the holidays. Every one of them!

Bah, humbug! 

We got through Halloween and now Thanksgiving is just days away. We've decided to run away this year. I'm not sure which is worse, though. Staying and celebrating without him or going away on a trip without him...both feel wrong. But Wyatt, no matter how badly he felt, was always up for a road trip. For goodness sakes, just weeks before he died he used all his energy just to ask me to take him to Disney World! And if I would have said yes, I do believe he would have been all for it.

Maybe it's genetic; as I quickly turned to Bryan a few weeks ago and said "lets go away for Thanksgiving." He looked at me for a few seconds, staring into my eyes trying to decide what the best response would be to my hasty suggestion. I started to explain my reasoning to him. If we go away, do something completely different, there is a small chance that we could actually have a little fun. And, at the least, it could distract us for a few days. If we stay, we will undoubtedly struggle emotionally through the Holiday, no matter if we stay at our home like we have the last few years or go to our families homes like we used to before Wyatt became very sick.

So, we're going to pack our bags. I'm certain I will feel as if I'm forgetting ten thousand things as it has been a long time since I packed without toting along large amounts of medical equipment. There is no need to make as many lists or strategize just how we are going to make it all fit. Instead we will have only suitcases of clothing for the four of us packed neatly in the back of our (according to the 12yr old) 'cooler than a mini-van' SUV.

When in doubt, pack up and take a road trip. It's close to Wyatt's way of thinking. Though, his motto would have gone something more like -- when in doubt go to Disney World! We won't be going to "The happiest place on Earth". But my hope is that we can find some amount of happy where we do end up.

This thanksgiving I still have much to be thankful for. I see it. I can feel it.

Be thankful, friends. 

Happy Thanksgiving.
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Thursday, November 21, 2013

The SuperWy fan club t-shirts.

We decided to design a t-shirt in honor of Wyatt recently. We purchased one for each of us and then tossed around the idea of making a bulk order of them for anyone else who may want one. I knew some of you would be interested. You've shown your support in many ways through the years and were also his adoring fans.

To make it easy, I made a sign up sheet where you can enter your name, contact info, sizes and quantity that you'd like. Then go to paypal to send a secure payment for your pending order to me. I will place the full order of t-shirts once we reach the closing date of the sign up sheet, December 6th (in 2 weeks).

Who wants one?! 

They are $16 each, taxes and shipping (if needed) included. All the information you need to know is on the sign up sheet, please read it all. Thanks!

http://www.customink.com/signup/4q0ppqr5
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$803

For Mitochondrial Disease Awareness week in September Maggie met with the guidance counselor of her intermediate school to request that they recognize and support the cause in honor of her and her Brother. She came prepared with her own awareness ideas for the week; selling green Rainbow Loom bracelets and awareness ribbon pins. Two of her friends offered to join her for the meeting and were also willing to help. The school agreed to support their efforts and together they began brainstorming ideas of different ways to raise awareness and teach the students and faculty about Mito each day.

Maggie, Jilly and their "Parental sweat shop" (aka -- Bryan and I) were making large amounts of green Rainbow Loom bracelets and ribbon pins that week to sell throughout their schools for a $1 donation. When the craft store ran out of dark green rainbow loom bands we supplemented with purple, Wyatt's favorite color. Making green and purple bracelets. The bracelets and pins were sold in the Intermediate school, the Primary Learning Center (Jilly's school), as well as making their way around the hospital showing support for awareness week and Wyatt and his sisters. Also, the art teacher at the Intermediate school, who is not only a teacher but also an artist, was kind to donate a painting for auction during the week of the High School's homecoming festivities, with the proceeds going to the charity.


In total, their efforts, which were spear headed by Wyatt's super sister, raised $803 for the United Mitochondrial Disease Foundation just a week before he died. I'm so proud of Maggie for talking about and sharing a cause so dear to her heart and asking the school for their support. I'm also proud of the school district for supporting and honoring the girls and Wyatt's fight with this disease.


We're so very proud of you girls. And I know Wyatt would be too!


You two will do great things.
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Wednesday, November 20, 2013

Shots and signs.

The school was giving flu shots a couple weeks ago and as we entered the nurse's office of the high school we were given the option of the flu mist or the shot. I listened as the nurse explained in detail the differences between the two choices. Certainly, in all our experiences in the last 11 years I'm aware of the differences. Though, she didn't know that about me. She was giving her most convincing argument for the flu mist when I almost stopped her in the middle of her talking points to say they can't have the mist because of their Brother's complex medical needs.

Then I remembered; that doesn't apply to us anymore. 

I stood there not sure what to say as she looked to me for an answer of which one we wanted for the girls. She kept directing me and assuring me that the flu mist is better coverage for all 5 strains of the flu and the shot will only cover 4. She didn't realize why I seemed to be hesitating. It wasn't that this was a monumental, life altering decision.

If she only knew the decisions I have had to make this year. 

Though, I think it may have looked to her that I really was weighing the pros and cons. I eventually just said "ok." To be honest, I didn't really care which version of flu protection to choose at that moment. What caused me to pause was that it just occurred to me (again) that my son is dead and no longer a factor in this situation too. Those moments of realization sting.

The girls did get the flu mist this year for the first time. As we were walking out of the building Jilly asked "Why didn't we get that before? We always had a shot." I explained it to her and they climbed into the van, quietly.

It can be little things that have more affect than the obvious, larger things that are associated with grief. Case in point; this morning the reserved handicap sign that was put up in front of our home by the borough was taken down without warning.

It's a small detail. A tiny piece of the picture.

But it surprised me. I knew it needed to happen soon and I was planning to contact them about it myself. But I didn't expect it today. I had no reason to expect it to happen today. I'm disappointed that no one contacted us about it first. Maybe that's silly of me...? I'm sure it wasn't significant at all to the person who decided that the sign needed to come down. It is just a sign, after all. I'm sure they assumed there was no need to contact us. But they were wrong. Buying the car this week was tough, no doubt. That was our choice. But the sign being removed today brought me to tears. Are my emotions over reactive...? Maybe. But none the less, what I feel is real.

This was something else of 'his,' for him, that's now gone.

It's not that I expected the sign to stay there, but more that it was done as if it didn't matter. It did matter to us. The little things that most would deem insignificant, the choice of a flu shot or a handicap sign, can make a day even harder to get through sometimes.
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Tuesday, November 19, 2013

A big step.

Maggie has been struggling with still using our wheelchair accessible mini-van after Wyatt died. While it served its purpose of being an easily accessible vehicle well, it feels very empty now.

That dark blue mini-van with its rattly side ramp has traveled with us many, many miles. To Disney World, Mount Rushmore, Yellowstone National park, Washington DC and every state and city in between those destinations. We all benefited from the accessibility that it gave us as a family. But we don't need what it was specially built for anymore.

I was hesitant to look for a new vehicle as we bought the van for Wyatt, to enjoy and live life more freely. Making our life much easier. It was, in essence, another piece of him. But, for Maggie, I decided to start looking for something else. She voiced her opinion of wanting an SUV. They are apparently much "cooler" than a Mini-van.

So, in theory if I drive an SUV that would mean I'm now "cool", right? 

I know what the 12 year-old's response will be to that question without even asking. ;) Yesterday I drove home in a shiny, new Honda Pilot. The girls were excited and enjoyed playing with all the buttons and new gadgets. I think Wyatt would have liked it too. We do still have our van. We will be getting it cleaned and detailed. And hope to find a family who could benefit from it a little while longer.

There seems to be many steps in adjusting, accepting and/or finding a "new normal" with grief. I feel like we could be standing near the bottom of a long staircase of hard concrete steps. Some uneven, some shaky and some cracked. But we're taking steps. This step was a little bigger than some of the others, not to mention more expensive! But the girls were smiling, excited and happy. Maggie's even looking forward to going somewhere now.

It was a big step, but a good step. 
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Friday, November 15, 2013

Thank you.

As I opened my front door and reached around to my mailbox to retrieve the mail that came for our family that day, I saw an envelope on the top of the pile with a return address from:  

Nemours Alfred I. duPont Hospital for Children.

I opened it carefully. I quickly recognized the formed letter laying in front of the tri-folded pages that were stuffed into the envelope. It was another letter informing us of all the donations made in memory of Wyatt. You may recall that in lieu of flowers we asked that donations be made to the hospital, our 'home away from home' many a time. We've received multiple letters like this over the last seven weeks, within them pages filled with names and addresses of those who donated to the hospital in memory of our son. It's been very touching to receive these letters.

I sincerely thank you for honoring our son's life and his memory. 

Thank you.





I've been asked multiple times where and how to give to the hospital. If you'd like to give a gift in memory of Wyatt, here is a link to the donation page: http://www.nemours.org/givingtonemours/makeagift.html

You may give a gift online with a credit card or there is printable form you may mail with your donation.


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Thursday, November 14, 2013

Stuck on repeat.

My mind feels as if it's stuck on repeat these days. Replaying various moments of time at the most random of times. Tiny things will remind me of him, which will spark a memory. I'm incredibly grateful to have so many memories with my boy. 

Eleven years of them!

I will always, always, always wish we had more time together. But so much happened in his eleven years of life. I've smiled and even laughed at many of the photos that I have looked back on. I've also cried seeing those of special events, his smile or the pictures that I caught of him laughing.

I do miss him as much as I love him. And I couldn't love him more.

I have so many pictures from birthdays, holidays and vacations. If you could see the amount of pictures I have you would realize that I clearly have a picture hoarding problem! But I've looked through them all. 

My mind has replayed the moment Wyatt died over and over the last 7 weeks. I don't need pictures to remember that day. I remember the expressions on our friends' faces. The way he looked and felt. The intense feeling of utter heartbreak as his body was lovingly picked up for the first time by someone other than Bryan or myself. Then carried from our home for the last time.

When he died everything felt to me as if it was happening in slow motion. I remember speaking out loud as Bryan was walking to the pulse-ox to lower the limits again. But I couldn't get out the words I wanted to say. Our friend had just covered him up with his fleece blanket before he took his last breaths. It was a Philadelphia Phillies blanket. I was thinking maybe he just needed to be kept warmer for the pulse-ox to pick up a stronger signal again. It happened all the time within the last year, his perfusion was terrible.

But I was wrong. 

I looked to his doctor who took steps toward us, holding his stethoscope in one hand, he laid his phone on the arm of the couch with the other as he bent down. I looked back to Bryan, who was standing next to our friend. I remember the expressions on their faces, the feeling in their eyes. I looked across the room to the dining room table as I heard Jilly squeal, she was still playing and didn't realize what had happened yet. Maggie walked cautiously, stunned and crying, over to us. I then pulled my little girl into the bed with Wyatt and I after our friend told her. Maggie and Bryan stood next to Wyatt on the other side of the bed.

"He was the best brother ever.", "I didn't want him to die.", "I hate Mito." were some of the phrases Jilly cried and repeated as she laid next to her Brother.

It's all ingrained into my brain. 

I know I haven't shared much about what happened on that day, but Wyatt's death was very peaceful. It felt as if it happened quickly, especially when you think about the length of time leading up to that day. I sat in the bed with him the entire day, holding his hand. I believe he waited to go until just the right moment. It was clear he held on until everyone he wanted was here, together in our home with him and us. People that cared for him deeply and loved him. And who he loved in return.

It feels like it happened just yesterday and yet it also feels like it has been so much longer than 7 weeks since I last held his hand, or gave him a kiss, or a hug, or told him I loved him. Occasionally it still feels somewhat surreal and other days the emotions are raw and can be suffocating.
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Tuesday, November 12, 2013

The strength of a superhero.

March 2012 -- After a little encouragement and coaxing, Wyatt stood on his own two feet, under his own strength. A metallic blue walker displayed around him, numerous tubes hanging from various parts of his body, he stood alone and by himself for the first time in 6 months.


In the months leading up to this he talked for quite some time about walking again. It's all he wanted to do. He longed for the freedom to walk across the room again, under his own power.

Something you and I may not even think of as special most days. 

He was hesitant to try that day, convinced he wouldn't be able to do it. But I remember looking in his wistful eyes and telling him he would never know if he didn't try.

We had been practicing sitting on the side of the bed. He worked first to just hold his head up and keep it from hanging and looking down. Then, as the weeks passed and he became stronger, he started to balance and stabilize his torso as his feet rested on the floor. As I was playing the role of 'physical therapist,' I would lay him down, holding his legs and feet in my hands to stretch him out. He'd kick and try pushing me away as hard as he could. Some days he could be quite strong! 

These things may sound simple, playful even, but it was work to make his muscles respond how he wanted and wished them to. He was weak, his muscle tone was a combination of extremely floppy and/or tight and he would sometimes shake as we encouraged him to keep trying, making sure he knew what an accomplishment these things were.


He would groan and complain with a smirk, in the way Wy always would when he was knowingly being difficult. He found enjoyment in being irritable and ornery sometimes.


Then, on that day at the end of March, he did it. He stood by himself, smiling even! He was so proud as I took these pictures. He went on to continue practicing and in a few weeks time he began taking small steps across the room without his walker. I would hold his attached bags, push the IV pole beside him and prepare to catch him if he should lose his balance. (My multi-tasking skills at their finest.)

It was a short time later Wyatt's body began to steadily decline no matter what we did to help him. It was that June when we were told there was nothing more we could do and we brought him home.



We then watched as he rallied his way through an entire year, 15 months to be exact. Birthdays, Halloween, a trip to Disney World, Thanksgiving, Christmas, a new year, Valentine's day, a trip to see the circus, the Harlem Globetrotters, to Washington DC, Easter, a Phillies' game, school concerts, a field trip to the aquarium, Maggie's musical, multiple trips to the movies, Chuck-e-Cheese's, the complete construction of a clubhouse fit for a superhero and another set of birthday celebrations. As many times as he had me worried that last year; juggling infections, antibiotics, respiratory requirements, his intense med schedule, and as many times as my stress level was far beyond a normal limit for one reason or another, when I look back on it now I can say I would do it all again. Sure, there are things I would have changed -- hindsight is always 20/20. And it certainly was not easy. But I don't regret for one second doing it all so that he could enjoy his life for as long as he was living. That's all he really ever wanted.

He just wanted to be a kid.


July 2013 -- On the evening of his 11th birthday party Wyatt saw Heaven. He was happy, surprised, seemed relieved even and excited to tell me about it.

"Mommy, it's real!" he expressively shared with me. 

That was the evening he decided he wouldn't use the ventilator anymore. We emailed the doctor asking his opinion that night. I honestly was hoping the physician would respond in the way that I wanted him to, so I could convince Wyatt that using the ventilator was in his best interest. But instead I received the emailed response that I expected from him. I can't say I followed my boy's lead without a little reluctance and even some fear. Fear of the unknown path that was laid out before us, I guess. It's hard.

So hard. 

But then there was a moment, after weeks of watching him struggle to breathe with using only supplemental oxygen, that I talked with my son. In that heart to heart conversation that we shared I gave him permission and the control that he never had before. Possibly the purest form of quality of life in my eyes now. It was the first time in his life that he could choose what he wanted or didn't want anymore.

And he was happy.


I miss him as much as I love him.

Both more than I can express with words.

I have found I do my best thinking these days when I'm nearly killing myself on the treadmill or in the van driving. It's also those times, when I'm sorting out my own thoughts and emotions, that the tears seem to come a little quicker. Recently, as my muscles were beginning to beg for a little mercy, I started to think about strength. There are different kinds of strength, I guess you could say. Different definitions even. But the strength I wish to have in life is that which my son showed and lived every day.

How did he do it? 

When I look at some pictures of him it's difficult to see and focus on the boy behind all those tubes, IV lines and the large amounts of equipment surrounding him. He was weighed down so heavily by it all. Mitochondrial Disease took nearly everything he had by the time he learned to walk again or even more when he was sent home to die...but he rarely questioned. He didn't hate the life he was given despite all he was put through.

April 2011 -- It was just six months before we were introduced to hospice, Wyatt had the opportunity to play on a little league baseball team.

One of the best times of his life, I'm sure he'd tell you. 

He would arrive in his child sized, shiny red power wheelchair and park it next to the dugout. He ran the bases at his baseball games with tubes hanging from beneath his team shirt and two drainage bags that were draining bile from his failed intestines secured around his waist. We disconnected his IV nutrition infusing through a 'permanent' IV line that was tunneled and threaded through a large vein in his chest just long enough for him to play before reconnecting him. I vividly remember standing next to the dugout watching him come in off the field during one of the games, he quickly made his way to his oxygen tank and the attached nasal cannula. He sat on the worn wooden bench, took off his baseball hat and was breathing heavily. He put the cannula under his nose, holding it there with his hand, and looked at me to say, while exhaling and with a smile, "I really need this!" That particular game was hard on him, I could see his body was fatigued and we knew he'd be in pain and pay for it all later. The thought did cross my mind if I should suggest he stop playing that day. But I'm happy I didn't. He loved and lived his life. He never gave up.


That's strength. The true kind.

That's the kind of strength that you can't create by training or exercising. That's the kind of strength that is deep inside you and part of your every being. That's the kind of strength that comes from the heart and the depths of your soul. That's the kind of strength I can only wish and strive to have some day.

In parenting a superhero, my favorite superhero, I've learned many things. I wrote about some of what I've learned here many a time. But when I sit looking at these pictures and thinking back on these different moments and memories of Wy's life, I realize I could only hope to know as much as my son someday. To believe as deeply as my son. To be as strong as my son. To be as trusting and loving as my son. To live like my son.

In some way, it's as if he knew the secrets of life at only 11 years old.
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