Tuesday, October 29, 2013

Halloween.

Last Halloween we carried Wyatt out to his special tomato chair on the porch where he and the girls sat while I took pictures. He put his arm around Maggie's shoulders and smiled. His equipment sat behind the chair. It was cold and Wyatt had made himself stay awake all afternoon and through the evening so he could hand out candy to the Trick-or-Treaters that would come to our home. He looked forward to Trick-or-Treat night each year. Even though he couldn't enjoy the candy or walk home to home like the other children, he loved seeing all the different costumes. Last year his shaky, tremoring hand reached into the big bowl of candy, he opened his hand and closed it intently to pick up each piece. The costumed kids waited patiently for him to drop the candy into their buckets or bags full of loot. He concentrated to say a chipper 'Happy Halloween!' to each and every family that came to our porch.


The first Holiday that we will spend without Wyatt; Halloween.

Yesterday evening I had a surge of emotions hit me. Overwhelming me quickly. I found myself feeling angry, sad and even jealous. These emotions are raw and ugly, but real and true none the less.

I want my life back. 

But no matter how much I would like to scream, cry or throw a fit, I won't get it back. I can't have it back. Instead of looking forward to Halloween parties at school, seeing the kids dressed in their cute costumes and concerning myself with having enough candy for the neighborhood children, I'm deciding on the specific design for my son's memorial stone that will be placed in the cemetery where he's now buried.

This is not fair. 

But life's not fair, right? That's what I keep telling myself. Bad things happen everyday. I know I'm far from alone in experiencing these feelings. Life isn't fair, but somehow we accept it and adjust. We figure it out. But then there are the days it just feels so much harder, unacceptable even.

This is it. This is the life I was meant to live. And one way or another I have to make sense of it, make it work for me and trust that God knows what he's doing up there. But sometimes He really makes me wonder.

Enough that I can't help but reply, "Really, God? Really?!"

As if I was drowning, the feelings were intense yesterday. I went upstairs to my bedroom, changed my clothes and put my sneakers on for the second time that day. I got on the treadmill again, put my ear buds in my ears and turned up the volume in an effort to work out (or drown out) these crazy emotions.

After a shower, I spent the evening drinking wine with friends and even laughing.

Grief is so weird.
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Sunday, October 27, 2013

To Heaven with love.

 
Writing notes of love.


To be sent to heaven.




At 5:42pm they let go of the strings...


the wind caught them

and swept them away quickly.

To: Heaven. With so much of our love.




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Living in the trenches.

I'm many things to different people. But these last weeks, as I try to find ways to fill the hours in a day, I've wondered; "Do I know who I really am?" I'm not sure anymore.

Wyatt's and my lives were so tightly knitted together.

I was the Mother that learned to navigate the intricacies, politics and practices of the medical world and the compromises of IFSP and IEP meetings. I was the Mother that would set up the video streaming system and learned how to work the small computer that transported Wyatt into his classroom to see his teacher and his peers during the school year. I was the Mother that went toe to toe with the discriminating Tai Kwan Do instructor that refused to let my son participate in his class because of his health, even though my son was plenty capable to participate. I was the Mother that stood at my son's first baseball game taking pictures and holding my breath as I captured the very first ball that was thrown to him. He surprised us all as he smacked the ball with the bat and ran to first base. I was the Mother that talked to one or even several physicians or medical professionals seemingly every day. I was the Mother who could see what my son could do and took joy in that. I was the Mother that signed a Do Not Resuscitate order and chose to take my son home to live the rest of his life. I was the Mother with a sick child who was grateful to be able to take care of him every day. I was the Mother that organized glass vials of medicine, IV tubing, alcohol wipes, saline, needles and syringes to make it easier for us in our daily routines. And I sometimes even felt the need to re-organize it all when I was really stressed. I was the Mother that wrote out med lists and timed each one with precision. I was the Mother who encouraged and taught my son how to walk again. I was the Mother who had to tell my son he was going to die. I was the Mother that comforted him, eased his fears and held him when he just needed to be close. I was the Mother that told him that we could live and have fun to his very last breath. I was the Mother that would transfer my floppy boy's body into a wheelchair, load all his needs onto the back and go out for the day so he could continue to enjoy what time he had left. I was the Mother that was carefully and strategically drawing up syringe fulls of various IV medicines in parking lots. I was the Mother that gave my son pep talks when he felt weary. I was the Mother that juggled neb treatments, titrated oxygen requirements and learned to delicately shove a suction tool to the back of his throat to clear the secretions that would inhibit his breathing. I was the Mother that sat in the bed holding my son's hand the day he died.

Woven intricately; over, under and around each other. 

Our lives became like a knitted blanket woven tightly together, but without him and those strings going over, under and around my own, the blanket begins to unravel. And when that happens, it exposes me.

The Mother that lived in the trenches for years, fighting a different kind of war. 

There are many of us out there. Fighting this war with our children, for our children who have a terminal disease. We can often relate to one another like only another who is living in these trenches can. The difference of this war is we often know what the end will be before it actually comes. We can dodge the attacks for only so long before it takes the one we are fighting for. And when that happens, when you don't have to fight any longer....then what?

For me, it's made me wonder who I am, what I want and who I want to be. Now that my son is free; running, playing baseball and riding roller coasters in Heaven. Who am I?

Am I the perky Mom that goes into the school to help in the classroom? The mom that fund-raises with enthusiasm and is active in PTO? Am I the Mom that cleans, cooks and does laundry all day for her family? Am I the Mom who has a green thumb and spends her day in the dirt gardening? Am I the Mom that will begin working again after all these years?

What kind of Mom, Wife or Woman am I now?

I have learned so much in the last 11 years. I can rattle off types of medicine, tell you if it comes in IV form, its uses, ways it needs to be administered and alert you to the side effects you may experience. I can tell you of different types of bacteria, antibiotics that will treat it most effectively and even lab ranges off the top of my head. I can teach you about the kinds of seizures, neurological and gastrointestinal function, physical, occupational, speech and feeding therapy methods. I can share with you what specialist to see for what problems, which ones are best at what, which ones were most helpful and those that were not. I can quickly drop an NG tube into a screaming, squirmy infant, put an expensive custom contact lens in a 2 year-old's eye, negotiate a deal with a child filled with more anxiety than you can imagine, talk a child down from an intense fit all the while keeping a sterile field. I can change a g-tube, give an injection, do sterile dressing changes and change a supra-pubic catheter. I can transfer a limp child that has tubes extending from various parts of their body with heavy bags attached to them in just a few minutes. I can troubleshoot a ventilator, its heater, IV pumps, enteral feeding pumps, suction machines, electric wheelchairs, among other things.

What do I do with all this knowledge and experience? 

I've been living in the trenches of a different kind of battle for a long time. I'm feeling unsure how to play the role of a "typical Mom" without all the other things that I now know.

I've gotten a lot of suggestions of what I could do. Write a book has been one that was brought up on multiple occasions by many. I won't dismiss it entirely; Wyatt's life was an amazing story. But so far, what I've done is taken a lot of brisk walks, started jogging even. I have finally broke down, turned on Netflix and started to watch the past seasons of a TV series that friends have been telling me I needed to watch for some time now...and I'm totally hooked. I've gathered with friends on Monday nights to drink wine and watch one of the reality shows that we used to watch with Wy. I have a love for wine and iced coffee. (But not together!) I've made myself do the laundry again and redecorated the living and dining rooms. I've shopped. Then shopped a little more. I have even volunteered to make clementines into pumpkins for Jilly's Halloween party at school.

Today is one month since Wyatt died. An entire month feels like a really long time. I think of my boy constantly. I miss him so. I'd give anything to hear him say "I'm boorrred" or "Moooooommmmy" again.

Anything.


I must thank you all for the outpouring love, continued prayers and support. I've read every email, message and card that we've received. If I have not replied to an email or message, please know I hope to. It's on my list of things that I must make myself do this week. Thank you for taking the time to think of us. We appreciate it greatly and send much love in return.

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Wednesday, October 23, 2013

The place we chose for Wyatt.

As I drove up the quiet road to the cemetery this afternoon I was greeted by the bold colors of Autumn. The trees that line the front of the small cemetery that sits on a hill are beautifully decorated with leaves that have now turned striking colors of gold and orange. As I continued to drive closer to the entrance the leaves began floating from their branches and falling all around my mini-van.


I continued through the gates and onto the narrow driving path in the small cemetery that sits on a hill until my van reached the part that Wyatt is buried. I put my van in park, turned the key to stop it from running and I got out.

There is something comforting about this place.

I stood looking at Wyatt's grave, where his body lay tucked in and beneath the surface of the ground. The grass is beginning to grow across the freshly dug dirt now. The flowers that sit in front of the Super hero themed marker were left from his funeral. They're now turning brown. The green and purple hummingbird that we brought him is still standing and bounces when the wind blows. The small, green metal truck that Jilly once picked to bring to him from his collection of toys is dirty with dried mud from recent rain. The solar powered light that resembles the Epcot "ball" is from our flower bed that stood beneath the weeping redbud tree that Wyatt chose and wanted planted in the front of our home. The light glows a rainbow of colors at night which Jilly thought Wyatt needed because he was sometimes scared of the dark.

It's windy on the hill, there is always a breeze and the air is chilly. But I felt I needed to be near my boy's body today. I just needed to sit there with him.


Is it weird to people watch at the cemetery that your son is buried at? Maybe a little, right?

Today I watched as a small older woman arrived in a newer red car. She stayed just long enough to place flowers at a stone before getting back in her car and leaving. I wondered if she was there for her Spouse, Sister, Brother, Son, Daughter or maybe a friend. A little while later another woman drove through the entrance in a mini-van. She was a little younger than the first woman, but still years older than I. She got out of her van and crossed her arms in front of her as she approached the stone she was there to visit. She stood looking at the stone for only a minute then proceeded to walk back to her van in which she left. As I was preparing to leave, an elderly man parked his own older blue mini-van just off the driving path. He sat in his vehicle for a short time before exiting. He zipped up his jacket as the wind blew, then opened the back door of the van and raised it above his head. He pulled out a pot of flowers and walked to a stone. He lovingly placed it at the corner of a nearby gravestone.

As I sat with my boy this afternoon I couldn't help but wonder who these people were here for. Who did they love so much to come to the cemetery today? As I sat looking around at Wyatt's "neighbors", there are some stones that are so lovingly decorated with small tokens, garden statues, flowers, flags, one even had a small fence around it and another with a birthday balloon tied to it that was seemingly dancing as the wind would blow. It's nice.

We chose this place for our son because it overlooks the girls' schools. This way he would always be near. The grounds on the other two sides of the cemetery are rolling hills of farmland. A small string of homes line the country road leading up to the entrance. It's a quiet and peaceful place.

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Friday, October 18, 2013

Today I did the laundry.

Since Wyatt died I could not bring myself to walk into the laundry room and throw a load of clothes into the washer. Or grab a basket of clean clothes and begin to fold them.

"Really? She hasn't done the laundry in weeks?" - you're probably thinking to yourself.

It's something simple, right? But I will confess; I haven't done laundry in the weeks since Wyatt died. I have not folded the clean clothes sitting in the square laundry baskets that rest in the laundry room. I avoided reaching into the baskets that hold the clothes that need to be washed. Bryan so graciously has stepped up to the task these last weeks and washed what we needed.

"Why?" - I'm sure you're wondering now.

It's because my sons clothes are mixed among the rest of ours. Wyatt's clothes that I would pick from and physically dress him in are in those baskets, some are clean and some waiting to be washed.

Today I walked to the back of our home to the laundry room. I sorted the small pile sitting in front of the clothes baskets that hold the clothing that is waiting to be washed. I sorted them by color, Wyatt's clothes too. I threw a load into the washing machine and started it to wash. In a small way, washing his clothing feels as if I'm washing him away. A small hair, his smell, anything that may have been lingering. As I watched the water wash over his red superhero shirt that laid on the top, I took a deep breath.

Today I washed the laundry.

I picked up a basket of clean clothes and walked it out to our dining room table, sat the white basket on a chair and began. I made piles of clothes, like I have done for years- Bryan's, mine, Maggie, Jilly and Wyatt's sit folded on the table.

Today I folded the laundry.

As I picked up each of his shirts, folded them in half, layed them neatly on the pile of his clothes. I ran my hand over the chest of the shirts to smooth it's surface. In doing so, I could feel his chest under my hand again. Just as I would when laying beside him in bed with my hand on his chest in those last weeks; feeling each of his breaths, his heart beat, tracing my finger around the loop of his central line to make sure the dressing was secure. He always hated when the dressing would lose its stick and become loose. My hand and my heart remembers the feeling so well. The moment that I placed my hand on his chest and I looked at my son and then up to his doctor that carried us all through these last few years. "He stopped. No. He stopped.", I believe I said. His chest was still, his breathing stopped, his heart was not beating. I remember so clearly looking to the doctor, who felt more like a friend. He held his stethoscope and laid his iPhone on the arm of our couch next to Wyatt's body as I moved my hand from his chest.

This all from smoothing the front of his shirts on the pile of his neatly folded clothes. I avoided doing the laundry for these weeks, knowing the memories that were thrown into those baskets.

But today I did the laundry.
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Wednesday, October 16, 2013

Grief.

Yesterday and again this morning, the girls got on the bus and went off to school, Bryan kissed me goodbye and headed to work. Pretty typical actions for a family, I would say.

That scenario has happened for years in our home, just like it may in your own. Both girls have been going to school for a couple years now and my husband has worked our entire life together. But this time those predictable actions made my son's death feel all the more real to me. It hit me hard as the door closed behind my husband and I sat at the dining room table trying to busy my mind. More recently just before Bryan would leave our home in the mornings we would give "report" to each other and go down the list of IV meds that Wy needed next and what Bryan had already completed infusing during the morning rush of getting the girls off to school. Flush the Phenobarb when it's complete, infuse Lasix, Decadron, Valium....

But our routine has changed since Bryan has gone to work last. With that alone, reality had a hold of me and I knew it was about to beat me up brutally. And it did.

I must keep going, I know. But the thought of spending years and years here without my son takes my breath away.

How can this be? What happened? Where did we go wrong?

I love him and I miss him and I want to take care of him. But I can't. He doesn't need taken care of now. I know that should make me happy, that he is free of the body that never worked like it was supposed to and never allowed him the childhood that he so deserved to live. And that does give me a sense of comfort. But the feelings of missing him overpower that feeling of comfort sometimes, which inhibits my heart and my mind from being able to synch.

I worry about him. I worry he didn't want to go. I worry that we should have done more for him and with him. I worry that maybe what we believe is not what is true. I know these are not entirely rational thoughts. I was there the whole time and know all that we tried and thought of, everything that didn't work. I know his doctor would have done everything that he could to help him. But I miss him so much that these thoughts have been plaguing my brain that has been replaying everything as if it was stuck on repeat.

We prepared for Wyatt's death for two years. We knew he was going to die. I grieved for my child for years. I grieved for the smiley, loud, laughing child that was full of life who we once knew as our son. I grieved for the boy who wouldn't play baseball, run or walk again. I grieved for the child who knew a great amount of pain. I grieved for the experiences he would miss.

I grieved for my son who faded before our own eyes while there was nothing we could do to stop it. 

I cried. I got mad. I cried some more. But I grew to accept the new normals that we couldn't stop from coming. He was still here and, as we have done from the time he was born, we focused on what he, or we, could do and not what he couldn't. Which was enough to help us accept those "new normals" rather quickly. We had to just keep going...and we did.

I like to be prepared, I like to know what is coming, I like when things make sense. I'm the kind that feels she can handle most anything as long as she's prepared for it.

Knowledge is power....yeah, yeah, yeah.

It's been only 20 days living here while my son is now there. Do you know what I have learned in those 20 days that feels at least twice that? I know now there is nothing that can prepare you for this part. There is no book, or internet resource, or medical journal that could tell me what to expect this time. There is nothing that can tell me how I will learn to just keep going without him, like Wy and I always did together. This time I'm on my own.

This week has been hard. Yesterday morning, after pulling myself together, I left the house with our dog to go for a walk. We walked and kept walking until Pippy looked as if she was about to collapse. Today I got in my empty van and just kept driving. God and I had it out today during my long drive. He was of few words, but I had plenty to say as the tears just kept falling.

You can prepare for your child's death for years, but there is no preparation for the grief, the pain, the brokenness and the empty space in your life. This part, no matter how much you research, you learn, you prepare for...this part you can only feel. And it hurts, in a way that I can only describe as indescribable.
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Sunday, October 13, 2013

Two weeks.

Friday, October 11th at 5:42pm was two weeks since my dear boy left his broken body behind and woke up in Heaven.


Two weeks. 

It feels like so long.  

Too long. 


Maggie's 12th birthday was just a few short days after Wyatt died. We invited a small group of people to our home that evening as we knew the sleepover party she was looking forward to for months that was planned for the day after his funeral needed to be postponed. Before everyone arrived on her Birthday Maggie took it upon herself to tape a hand written sign to our front door that read; "This is not a party. This is a small gathering." Those two sentences spoke loudly to me about her feelings. I was not feeling up to hosting a party or even a small gathering at that point in time either, but she seemed pleased to open her birthday presents and spend time with those who love her.


This evening was her "official" party that we had postponed. There is currently a small group of girls giggling into the wee hours of the morning somewhere in amongst all the pillows, sleeping bags and blankets that are scattered across the living room. She seems to be having a lot of fun.

This last week the girls went back to school. Monday morning Jilly came to me before walking out the door with Daddy to go to the bus stop. She gave me a hug, I kissed her cheek and she kissed mine, just as we always do. She looked around a second, not sure what to do, and then she looked up. She waved to the air and said "Bye Wyatt." She's never left for school without saying goodbye to her Brother before, but this is her new way. She talks to Wyatt and waves to Heaven wherever she may be.

As the girls were both in school Bryan and I left the house together, just the two of us, for the first time in years. We were even able to have a lunch date Thursday afternoon. We actually ate in a restaurant...it's been so long! Right now, though, as I'm typing, we've retreated to our bedroom as the gaggle of tween girls have taken over the downstairs. Bryan is dozing off as I continue typing with the computer on my lap. We have no meds to infuse, or the need to suction, or monitors to watch, or the need to discuss the appointments or phone calls for the following day, or a small hand to hold, or a boy to talk to.

Maybe you just noticed I mentioned retreating to our bedroom...

Yes. It's true. 

Come the middle of the week we took a deep breath and made ourselves walk up the stairs to sleep in our real bed that has been waiting patiently for us. The night Wyatt left our home I cried a cry that came from deep within my heart as I folded up the pull out bed for the last time. I could never bear sleeping there without him beside me. So I tried to sleep on the actual couch and Bryan in the recliner. I didn't sleep much at all before this last week...not because of where I set up my makeshift bed each night, but just because. But this week we felt it was time we transitioned ourselves back to our bedroom like most normal people, even though I don't feel normal at all. It hasn't been an easy transition, though I didn't really expect it to be. The tears come easily as I lay my head against my pillow each night. It's in the quiet moment before I fall asleep, when I would always kiss his cool, squishy cheek one more time before falling asleep holding his hand, that the feelings hit me again.


Monday Bryan will go back to work. The girls have off school for Columbus day, but on Tuesday they will be in school, Bryan at work and I'll be alone for the first time. I've been thinking about what I will do to pass the time.

 What do normal people do during the day?

I can only shop so much...retail therapy is a great thing, but there is a limit. And I've hit that limit within the last two weeks. I'll be sure to let you know what I come up with to fill my hours before the girls come home again.


In some ways it feels as if everyone else's life has just paused for a moment. They took a short leave, a day or two, a week or so, a few hours, but their life then resumes and picks up much like it left off. But that's not the case with mine. There is no going back to my life, I can't restart, resume or pick up where I left off.

My life stopped. 

I imagine it's normal to feel this way as it's true in some ways. I know I will figure out what to do and where to go from here in time. But right now, as everyone else picks up where they left off, it's difficult as I need to completely start over.

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Friday, October 11, 2013

Dear Disney.

Dear Disney Corporation,

I'm writing to you today to extend my thoughts on the new disability access protocols. Please, don't stop reading. I do realize you are likely getting bombarded with thousands of letters talking of this new change to your company with many personal stories. But I want and think you need to know our story too. Please, I just ask that you read my words and really think about the impact on other families like mine.

My son, Wyatt, loved Walt Disney World in a way that you would have to witness to fully understand. Starting at 2 and 3 years old he would watch the free promotional DVDs over and over and over until they stopped working from so much use and abuse. He would later read books and vacation guides for fun, as he loved to imagine what the rides would feel like by reading their descriptions.

We were able to visit Disney World several times in his life. Wyatt was very, very sick. My son had Mitochondrial Disease. In 2012 he was nearing the end of his life and spending the rest of his time at home with hospice care. He asked and pleaded with us to take him to Disney World for several months. We said "no," until that October. I realized then I may regret not giving him this wish and felt he possibly did need to go there one more time. I talked with his medical team and we started planning to leave in just a few short weeks, as we didn't have time to wait. This would be no easy task to prepare for. We rented a large RV to travel to you from Pennsylvania. My son was unable to travel any other way. He needed space to lay down, electric to power the multiple pieces of equipment that he needed to stay alive and we needed space for his large amount of IV medicines and supplies. We reserved a room at the Polynesian Resort, one of his favorites. And it would have a castle view, as we weren't sure my son would be able to leave the hotel, but this way he could at least see the castle, the ferry boats and the water parade from our resort room.

My son's body was failing, but he wanted to visit Disney World one more time and we were determined to make that happen for him one way or another. 

Disney World for him was freedom. He could ride a large portion of the attractions and enjoy the surroundings and parades...in Disney World he can experience his surroundings like any other child there. That is invaluable! Disney World was the only place that he was able to experience life in that way. For families like mine, this is something that we strive for every single day but often struggle to obtain.

The day before we left to come to Disney World Wyatt became even more sick. But, with his doctor's blessing, we decided to continue with our plans for this last trip to Disney World. There was concern that he may die while we were there. I was scared, but I also wanted to honor our son's wishes to go on a vacation one more time.

We didn't come to your property with a "Wish" organization. Wyatt had a "wish trip" already a few years earlier, and going through the process of using an organization like this takes time that we didn't necessarily have.

When we visited for this last time in November 2012 we did utilize the Guest Assistance card. This card was the only way our family could experience the parks together. When I say it was the only way he could experience any of the park, I truly mean it. He was not only restricted by his physiscal health and the energy which it took from him, but his equipment needs provided their own time restrictions. Wyatt was requiring large amounts of oxygen, a ventilator and a pulse-ox machine to monitor his heart rate and oxygen saturations of his blood. The ventilator and the pulse-ox machine had a limited battery life. His oxygen requirements, being so high, greatly limited our time away from a high flow oxygen concentrator (that needs electricity to run). We had a window of 3 - 4 hours per day to work with before we would have to be back in our resort room to refill oxygen canisters with liquid oxygen and plug his vital machines into the electricity to recharge the batteries. At that time Wyatt would be fading and would need to rest his body and sleep for the next 20+ hours. My husband, Wyatt's father, and I would spend our days in the resort room administering IV medications and taking care of our son while he slept for those 20 hours. In the late afternoon we began to prepare to go to one of the parks later that evening. We began to wake Wyatt; this process took 1-2 hours as we filled oxygen canisters, made sure we had adequate amounts of his IV medicines and supplies that we would need and we unplugged his machines at the very last minute to ensure we were able to use every second of battery time that we could. We stayed on your property to ensure the easiest and fastest travel times to the parks and did everything in our own power to give us the most available time to experience the magic that is Disney World. Your Guest Assistance card at that time did just that for us too.

The evening that we arrived in Disney World Wyatt's eyes lit up, he threw his hands in the air and cheered from the back of the RV with a Pennsylvania license plate. His tubes and IV lines that extended from multiple areas of his body laid all around him. We made it...he made it there one more time. Our times in the park that week were some of the best he had in a very long time. Being there showed Wyatt he could still have fun even if his time with us was limited. He was able to ride multiple rides in the 3-4 hour window of time that we had to work with. He smiled again, we heard him laugh and he was able to have fun despite his body failing him.

My son died on September 27, 2013, just a few weeks ago. I witnessed Disney World giving my son something to live for. He fought to live every day of his life. And after that trip he came back with a little more hope. Wyatt knew he was dying and knew that we couldn't change that for him. But like any other young boy, he just wanted to have fun. Disney World, with the help of the Guest Assistance card, did just that for him that last time he visited.

While we visited Disney World we saw those who abused the system that you had in place for your visitors that needed more assistance. We witnessed it too. It would anger and frustrate me as a parent of a child who needed those services to watch another family misuse the system. It wasn't fair and those individuals will probably never fully comprehend my point of view. I understand why you made this change. But, I think you need to know that in doing so you also punished families like ours. Wyatt would not have been able to enjoy Disney World in the way that he did when we visited that last time if this new system was in place. It saddens me to think of another family that could be in our position with a child who loves Disney World with all their heart and needs to experience that Magic one last time. The family that will now miss out on the priceless memories of that last Disney World vacation with their child because the machines they require to survive do not allow them enough time to wait around for their assigned time to see an attraction or experience a ride.

I realize I'm just another Mother of a sick child that now died that is sharing her opinions and feelings on your new system that has caused outrage. I know I'm not the only one. But I want you to know, those memories that we were able to make in November 2012 during my family's last trip to Disney World together are priceless to me. I saw my son living despite the severity of his health. I saw my son and daughters having fun together like all the other siblings there in the parks. I could see my son again, the boy who was fading before our eyes. My son didn't die at Disney World like we feared, instead Disney World brought him back to life and gave him the fight he needed to keep going for a little while longer.

But I don't believe that would have been the case with your new system. I ask that you think about the rules that have been recently set into place and make adjustments for families like ours.

I may never need another Guest Assistance card or your services for park goers that need assistance. I have my memories of that very special trip that my son insisted on. Thank you for being there for our family and providing us the ability to create those sweet moments. But I know there are other families that will truly need the assistance that you once offered too. I sincerely hope that you are able to adjust your program to help them feel the magic and create the memories that they will one day cherish when their child is gone. 

Sincerely,
Ashley DeStephano



********************
The Disney Corporation recently changed their guest assistance program for those with disabilities or the park goers who need different accommodations within their parks. The changes that were made were rather significant and make a great impact on families like ours when visiting. I feel for the families that this will affect and felt the need to share our experience and concern for these changes.

I realize it may not make an impression or reach those who make these decisions about their services. I also realize the changes that were made were done so because there was a very real problem that needed solved. However, I feel they do need to know that adjustments to this new program are needed in certain situations. Perhaps not with a majority of their visiting families, but there may possibly be a family like ours who will arrive at their parks needing services that are not currently being provided. I do hope by sharing our experience it may help them to prepare for the needs of those potential visiting families.
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Thursday, October 10, 2013

He knows.

One of the last times that Wyatt woke was near the end of Mitochondrial Disease awareness week. In those minutes that I saw his beautiful eyes, I was able to tell him that his Sisters were making and selling hundreds of rainbow loom bracelets and awareness ribbons in honor of him, their Brother. Bryan had just left minutes before he woke up, so it was just he and I here in our home. I continued to tell him of the large number of people that love him and are supporting him both near and far. I also told him of the video I put together for the special week and how it was being spread via the internet.

I was able to share with my boy that he was doing it... he was "making a change", like he always said, and by sharing the story of his life he's teaching people about Mitochondrial Disease and that is part of finding a cure. He looked at me, his eyes open and focused on mine. I could see his lips and cheeks twitch as he tried to form a smile.

"I am so proud of you." I said quietly as I looked into his telling eyes.

I started another of his IV meds infusing and then laid down beside him on the now squeaky, worn, lumpy pull out bed. My hand was resting close to his when he moved his arm ever so slightly to make it so our hands were touching. I placed his hand into mine and wrapped my fingers around his as we laid together. A small smile on my face and the feeling of renewed hope in my heart as I got the chance to "see" my son again. And I was able to share with him how far and wide his story is reaching by him just being the super kid that he is.

He closed his eyes after holding my hand and once again drifted away from me to a far away place. But those few minutes that I was able to share with him the impact he was making by just being himself meant a great deal to me. There may not yet be a cure. But he now knows that he made a change, a difference, in the 11 years 2 months and 4 days that he fought to live.
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Tuesday, October 8, 2013

Everything changed the day Wyatt died.


This is one of the memorial cards that were made for his services.

"You did good." I said to my boy the evening he died.  

He did so, so good.

He fought so hard to stay with us. I would never wish him back to a life of pain, but I miss him so much. Everything I do, everything I say, everything I watch on TV, everywhere I look something reminds me of him. Whether it's something he would have said. Or something we did together so often. Or something that I don't need to do now that he's gone. Or something that I can just predict his reaction to. It's all a reminder. 

Walking over to his large med cabinet and pumping the bottle of hand sanitizer to rub on my hands instantly causes the grief to wash over me. I used to do that so many times a day. Just before pulling out a glass vial of medicine from the med drawer, a sterile syringe from its designated spot, an alcohol pad from its holder and when the med was drawn into the syringe I would walk over to the IV pole towering beside him to start the infusion. It all still sits in the large cabinet that takes up a full wall in our dining room. A week's worth of TPN, bags of saline and a few meds that need to be refrigerated are also still in his refrigerator next to the cabinet. It all now, in some small way, has emotions attached to it.

It was one of the first things that Jilly asked about when she knew Wyatt would be going to Heaven- 'What will happen to all his medicine and his things?' 'What will we put in there now?'

The cabinet itself was made by my Grandfather, so it will stay. But that was all I could tell her. I don't know what we will put in there now. The evening he died there were a lot of questions lingering, many coming from Jilly as her tears and questions were plenty when laying next to her Brother whose body was now still and quiet.

I responded to her questions mostly with- "I don't know, but we'll figure it out."

Everything changed the day Wyatt died.

Just two days after he was gone, a person who worked for the DME company came to our home to take away his special bed and mattress that he's slept in since he was about 5 years old. The bed that had a spot in our living room for the last couple of years. Watching his bed be taken apart and walked out of our home piece by piece was so hard. The memories that bed held flooded my mind when I heard the chugging motor as the position was changed and it was lowered to the floor one last time. I wish I could curl up in it again, surrounded by all his stuffed friends and pretend I was laying beside him, holding him. His sheets, his pillows; they smell sweetly of my son. What I would give to lean over the rail to give him a kiss and feel his squishy cheek against my face.

That same day that his bed left our home the infusion company contracted through hospice sent someone to come pick up his PCA pumps and button. The button that he often clutched tightly and the pump that infused the medicines that gave him relief from pain. 

Four days after, the respiratory company came to pick up their equipment; the ventilators, O2 concentrators, the liquid O2 and companions, O2 tanks and the pulse-ox. Then this evening the infusion company came to pick up 7 different infusion pumps, a carry bag that was intended for his TPN (though we never used) and the big IV pole. These are pieces of equipment that kept Wyatt alive and that we integrated into our lives. We learned, adjusted to and relied on each one of them and they are now gone from our home for good. After the courier left I opened the card she had given to me. I opened it to see written messages from all the staff at the infusion company that we've come to know. And some that I talked with at least once a week, some weeks even three or four times, for years. There are so many people that helped us take care of Wyatt that we've come to form relationships with.

Now what? What do we do now?  

I don't know yet. But I guess we will figure it out. 
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Friday, October 4, 2013

My son died.

There have been many times this week that I wanted to sit and write, but the week was so full of tasks that needed to be completed, decisions that needed to be made and my mind was feeling overwhelmed by it all and the emotions that accompany a grieving Mother. 

Today was one week since I've laid beside my sweet boy in the bed, holding his hand...knowing that it would soon be the last time I could hold his hand while he was still alive. Today I took long looks at his face, his eyelashes, I ran my fingers through his hair repeatedly and laid one last kiss on his forehead for the last time in this life. 

There are no words to describe the feelings that surged through my entire body today. I went through the motions of the viewing last night with a calmness in my heart. I wondered if that was normal. To feel the emotions, but to feel calm at the same time. Today, I felt a mess...from my shaking hands, to the panic that felt as if it would come bursting from my heart, to the nauseous feeling that followed me all day. This day it all felt real. The last time that I would see my son's earthly body, the last time I could run my fingers through his hair, the last time I could look at all the little pieces that made him look like him. It did not feel surreal today, like it has other times through the week.

This was real. This happened. My son is no longer breathing.

My son died. 




(This is a video that was played at his service today.)




Thank you so much to everyone that came to Wyatt's services last night and today. As well as the many messages, emails, cards and notes filled with supportive and loving words. Though I have not responded, we have read each and every one. Thank you for continuing to think of and pray for our family. We are so grateful that we have a community, "a village", to walk this path with us.
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