The Funeral

I don’t have the right words to properly describe the funeral.  It was horrible. It was beautiful.  It was so many things. 

When we first arrived at the funeral home for the viewing we were able to go in to see Willy first and have some private time with him.  Somehow seeing him in the casket wasn’t the horror I thought it would be.  They did a great job.  He was peaceful.  He looked at rest for the first time in, well, maybe ever.  And I know he was not there.  It was just his shell.  But somehow seeing him was comforting.  Sad, yes, but comforting.  When the public viewing started, I was amazed at all the people who came out.  We all felt very supported.  People that we hadn’t seen in years came out to wish us well. By the time the actual funeral started, the room was packed.  Many of Willy’s friends were there and it did my heart good to look out and see all the wheelchairs.  Willy’s friend Gracie came from Columbus, Ohio and her smiling, laughing face was like a salve on the wounds. My friends Brian and Ty, whose daughter passed in June, also came from the Cincinnati area.  Old and new friends were there and it felt good. 

My Uncle did the speaking.  Todd and I both chose songs to play.  Trish read a beautiful story.  I attempted a eulogy.  I’m not sure if what I did could be considered a eulogy but it was from the heart. I knew that I had to speak at the funeral.  I was Willy’s mom.  I carried him for 9 months. I loved him more than anything in the world.  I had to send him off to his new world.  I knew I probably wouldn’t make it without crying so I asked Trish to stand up with me.  It felt good that we were there together.  Looking out over the crowd I could see so many people who we knew from so many different places, all a part of our story in one way or another.

Willy’s Eulogy:

When Trish and I decided we were going to speak today I figured I’d read a poem or verse, something meaningful, you know, just to say I contributed and was a part of my son’s service. I read over lots of poems and verses and beautiful though they were, they weren’t what I wanted.  I want to talk about Willy. So I’m going to talk about Willy.

When Willy was diagnosed with lissencephaly at four months of age, it didn’t take Todd and I long to jump in with both feet.  Todd was sad, of course, but he didn’t blink. At the time of diagnosis he said something like “well, whatever we have to do we will do.”  It took me about 12 hours.  That first evening in the hospital was rough. I went through the mad, the sad, the whining, etc.  Then my friend Maureen found a lissencephaly group on yahoo (can we all remember life prior to facebook?) I found my first set of friends who had liss kids who were 4 and 8 and 12 and even one who was 30! The parents sounded normal and nice and encouraged me that it’s okay and it will be hard, but it can be done. So I started to gain some confidence and came around to the ‘show me what to do and I can do it’ state of mind.

It was hard. It was 24-7.  We had a brief reprieve these past two years when, ironically enough, going on hospice allowed him better health. But there were years we tended to him all the day long. There was a three year period where constant bouts of pneumonia and uncontrolled seizures kept us inpatient all the time. Through it all we never wavered. We were steadfast in our mission in order to help Willy with his mission.

I am not one to go the “Willy was born for a reason” and “God chose you” and those sorts of things. I believe in God, but I don’t believe he’s’ up there saying “Hm, let’s send a very medically ill, fragile, and complicated child to someone because I now they can handle it.” Birth defects happen to 1 in 3 babies.  Cerebral palsy happens to 1 in 326 births. Things like this just happen and the control is out of our hands.

What IS in our hands is what we make of it.  Although we were sad, neither Todd, nor I let it stop us from giving Willy a life. Experiences.  Yes, they were adapted because there were realistic limits to what we were able to do with him. But it was still a life. Todd, while more private, did a lot of “manning the home front” while I sat on different boards, did some testifying in Congress, did a lot of advocacy, even taking Willy to Washington DC last April, and those sorts of things. We’ve made some differences, some improvements to a system that is very broken, and will continue to work in this area.

I’ve been very public about our journey with my blog and with different forms of social media. Mostly, I want people to know these diagnoses are game changes but you’re still in the game. You get ONE life. What you do with it is up to you. There are things in life that happen to you, loss of a job, illnesses, anxiety, depression, house fires, it doesn’t have to be lissencepaly.  But what you do and where you go from there is entirely up to you. Find a network, maybe the people you used to have in your life aren’t the right ones for you anymore. That’s okay. Find the right ones. With the onset of social media this isn’t hard to do. Find a group and forge ahead. Make a difference.  Make something positive comes out of your negative, whatever your negative is.

I may sound overly optimistic and yes, those of you who know me well, I do try to always look on the bright side. Trust me, there are very, very dark days.  It’s not easy just because I might make it sound so. But the point is – it’s possible.

Willy taught a lot of people a lot of things in his 11 years. He changed me.  He made me more empathetic. Softer. I don’t like that he had lissencephaly but I like who I am now better because he had lissencephaly. The group of people I have now because of Willy’s liss is the most amazing group of people I could ever want to have. 

Wrapping up – I’d like to thank Todd. From day one Todd and I have been on the same page about all of Willy’s decisions. He was a true partner in this journey. I’d like to thank Trish and Ted who came at a time when Will was healthier. They were able to bond with him and get to know him and create a solid relationship with him to prepare them to grieve with us. They gave us some relief after having taken care of him ourselves all these years.  Neither of them flinched in taking on the role of step-parent to a terminally ill and very medically complex child. There are more people, of course, but the four of us were the team. We call ourselves the clan. Committed to this family that includes Grant and Gabby as well.

Lastly, I have to thank Grant and Gabby. The life of a special needs sibling is not easy. (Understatement.)  They handled it with grace.  Even as an 11, 12, 13-year old Grant could feed tube, change diapers, and seizure watch. He’s learned more about life in his 13 years than most learn in an entire lifespan. Gabby, well, Gabby loved Willy in her way. The night Willy passed, Gabby didn’t leave his side for the entire four hours before the funeral staff came to get him. She gave him the last hug while he was on the gurney waiting to be wheeled out to the car.

I look forward to making up for lost time with them and taking them places that weren’t possible while Willy was here. We will refocus our energies.  We will grieve together and be stronger for it.

Willy, We did our best. I know you felt our love.  I believe you are with Grandma Juanita, Grandpa DuWayne, and many of the other special kiddos who went on before you. I will see you again but it will be a while. Play, have fun, and wait for us. You were the most innocent angel earth could have. We now send you to a better plane. One that is vastly improved from this one.

Be well, my Willy, until we meet again……

At the end of the funeral, we all sang "You are my Sunshine" to Willy one last time. This was the song that his Grandma Juanita sang to him ever since he was born.  She last sang it to him right before she passed away last April while she was home on hospice.  He always responded to that song. He knew it was his song. 

After the funeral was over, everyone was invited over to our place.  My friend Teresa and her mom and sister graciously cooked a bunch of food and had it all ready. I had to do nothing.  It was wonderful having that time to just visit with people. 

Emotionally draining. By the time everyone left I had nothing left to give to anyone. I had to recharge to be prepared for the burial the next day. 

Funerals are for the living.  I finally truly understand what this means.  

The Time In-Between

Willy passed away at 12:41 a.m. on 11/5/15.  His visitation started for family at 12:00 on 11/8/15.

It's the time in-between. 

I'm trying to capture those few days after Willy passed and before his funeral. It's so difficult.  It's this weird alternative dimension. "Hazy" is the word I like to use to describe it. You can kind of see, hear, and feel, what's going on but it's muted. It's muted and you're moving very, very slow. Feet stuck in mud, head clogged, voice diminished, thought processes on holiday break...

Picking up where the prior post left off finds us at home getting ready to let the funeral home take Willy away the night he passed.

The funeral home staff handled the transition beautifully. They waited patiently while we all said goodbye to Willy one last time.  After we said our last private goodbyes in the bedroom, the staff came in to prepare Willy to move. They were requested before-hand not to cover his head and they did not.   They tucked him cozily into the gurney and placed a paisley-patterned black blanket on him.  He looked asleep and incredibly peaceful.  As they were leaving the bedroom, Gabby draped herself from our bed onto the gurney for one big last hug. 

We all walked Willy out to the car together: his dad, his step-parents, his grandpa, his siblings, his grandpa’s fiancé, and me, his momma. We followed the gurney through the apartment into the most beautiful night. The skies were so clear, stars were shining and the air was crispy.  Again, the funeral home staff waited patiently while we all said one last goodbye to our beloved Willy before putting him into their vehicle.  With promises to call in the morning, they drove off with our Willy, leaving us standing on the curb. 

Our hospice workers stayed a minute, made sure there was nothing more we needed, and left us to grieve together. It was 4:30 in the morning and we were all exhausted but no one wanted to leave.  It was like if we didn’t move, it wasn’t true. If we just stayed there, time could be frozen forever. 

We knew that wasn’t really true and so after a little more discussion, everyone went their own ways with promises of getting together in the morning to talk about plans. Ted and I were then left alone with Grant and Gabby.  None of us could even think about sleeping right away. Neither kid wanted to be alone so we set up nests for them in our room and talked for a while. Eventually, around 7 a.m. we fell into fitful sleeps until the funeral home called promptly at 9:00.

We made an appointment for Todd, Trish, Ted, and I to come at 1:00 to plan the funeral.  

FUNERAL? WHAT FUNERAL? WHAT THE HELL JUST HAPPENED? 

Everything had been so hazy until then. Were we dreaming?  I felt like my feet were stuck in mud.  Somehow we started to get ready to go. It wasn't one of those appointments we could miss. My mind was racing.  What about Grant and Gabby? I couldn’t leave them alone while we went and planned their brother’s funeral. 

Willy and Bear

Luckily my friend Teresa was already in motion. She was on her way to the store to buy food and supplies and then come over.  She planned to man the house and do whatever was needed including taking care of the kids. T arrived and we tried to eat a little something before going to the funeral home.  Todd and Trish were going to bring Willy’s monkey and Ted and I were to bring Bear. Monkey and Bear were his people. His gang. When Todd and I were together, Willy always had Bear and Monkey; one on each side.  After we separated, Monkey went with Todd and Bear went with me.  He loved those critters dearly and would often pee on them just to prove it. (Accidentally of course.)

Willy and Monkey

So with Bear firmly in hand, Ted and I set off for the funeral home which was right down the road.  We met Todd and Trish in the foyer and went into the room to begin the plans. It was light-hearted at first – I think we were all exhausted and still shell-shocked.  Grief hadn’t set in yet. Todd and Trish had chosen a few pieces of clothing and I guess that was our first funeral decision.  We decided on a plaid short-sleeve shirt and an off-white Chaps vest.  Whew.  First decision over. Next?

The funeral director, Teresa, patiently guided us through all the decisions that needed to be made.  We talked about Willy’s life insurance, the flowers, the program, what we wanted, what we didn’t want, and we even managed to toss in a few jokes about the four of us. (It’s low-hanging fruit, really, and fodder too rich to walk away from sometimes.) 

After spending a few hours at the funeral home making what felt to be the strangest yet important yet necessary decisions, Ted and I went to Michael's in order to purchase supplies to make photo boards. Isn't this what you do for a funeral?  You make poster boards.  Just like the church ladies make those cheesy potatoes, the family makes up poster photo boards. As long as I had tasks to complete, I was okay.  So poster boards it was. 

One of EIGHT!

Another poster board. We had 8 total!

Pre-birthday dinner for Grant

Those days directly following Willy's passing seem so hazy.  We had people in and out.  Deliveries. Fruit baskets, Flowers. Cards. Donations. Well wishers. My friend Christine took Gabby to get her hair cut. I had to go buy a funeral dress. My friend Tracy came over Friday the 7th so Ted and I could take Grant to dinner for his birthday.  She brought dinner and made memory box crafts with Gabby.  Grant's birthday is November 9th and we planned to bury Willy that day.  We figured a night out with just the three of us before the funeral wasn't a bad idea and we had already had it planned. 

Somehow we made it up to the night before the funeral.  I felt ready. For the funeral. I wasn't ready for the death but I felt ready for the funeral. Can one ever be ready for the funeral of their child? Or of any loved one?  Even when they know it's coming someday?

No. Never. 

And we were about to find that out. 

Good Bye Willy William Douglas Pickett 3/12/04 - 11/5/15

I've always been very public with our journey with Willy and I don't intend for that to change. This blog post will be different.  Please allow me to express what happened our last week with our Willy.

On Wednesday, October 28th, Willy switched back from Todd's house to ours. Todd and Trish have the kids three days a week and we have them four. It was a normal switch, normal week. Willy had some extra phlegm and what appeared to be the start of a pesky cold.  Of course we know there is no such thing as a pesky cold in lissencephaly kids but it didn't appear to be too bad. Yet. Willy went to school Thursday and Friday. Friday they celebrated Halloween. I'm not a very crafty mom so I put Willy in his super comfortable Marvel comics pajamas and taped a Super Willy sign on his chest. 

The school had a party.  There was a DJ.  His teacher, Claudia, said that he enjoyed the DJ and the music (he always loved music,) and it was in general, a good day. The only downside was the darn phlegm still congregating in his chest.  By Friday night and into Saturday morning he had a full blown fever and was fairly miserable. 

I did some Willy maintenance over the weekend which included some oxygen support and breathing treatments.  By the time he went back to Todd's on Sunday afternoon he was still under the weather but not worse.  "Not worse" is lingo in our world that means all is okay - for now. 

I never worried about Willy when he was with Todd.  Todd took fantastic care of Willy and had all the same tools at his house that I had.  But by Monday he took a turn for the worse. Tuesday morning I had a talk with Todd on the phone and heard just how bad Willy sounded when he coughed and breathed. Todd and I decided it was time to call hospice and just check to see if it was pneumonia or if an antibiotic was needed. 

On Tuesday afternoon, November 3rd, the hospice nurse diagnosed Willy with pneumonia. He's had pneumonia before - dozens and dozens of times.  But this was his first time with pneumonia since we put him on hospice.  This meant no hospital. It meant we nursed him back to health ourselves. We had the tools, we had the knowledge, and we were ready. Wednesday we did the switch back again. Todd brought Willy back to me at 1 and explained all the protocols he'd been doing for Willy.

Normally when we switch back it's quick. Here's this, here's that, so-and-so needs this slip signed, Willy had his afternoons, etc.  This switch back was different.  Todd stayed a bit longer. His eyes looked sad and tired.  (He was tired.  He'd been up every two hours the night prior tending to Willy.) He told me he had "the talk" again with the hospice doctor who had been out that morning.  When will the end come?  When will it be time to let him go?  Would it be this time? Probably not.  But it's their job. They have to continue to provide us with options; especially when the patient - in this case, our Willy - is sick. 

I asked Todd what he thought about this bout of pneumonia. He just shrugged and looked at Willy with sad eyes. He gave Willy a kiss and left. 

I got Willy comfortable in his bed and gave him all the medicines it was time for. He wasn't comfortable at all.  He thrashed back and forth - especially when I put the oxygen cannula on.  He never liked the oxygen cannula but he never thrashed back and forth. I took turns putting it on and taking it off.  When the morphine would kick in he'd have a period of rest and calm for about two hours. I noticed there was starting to become a delay in between his breaths so I took a video and texted it to Todd. I thought it was just the morphine putting him in a deep rest. 

Finally we were ready to put everyone to bed for the evening.  There's no way I could keep Willy in his bed. (He rooms with Grant and I knew I'd be in there on and off all night.)  Ted told me to put Willy in our bed and he'd bunk in with Grant.  

I set up a little nest in our bed and brought all my Willy supplies into the room and settled in for a long night. I wanted him to have the oxygen. I put the cannula on and he thrashed his head on the pillow like I have never seen before. He tossed his head back and forth and scraped his nose on the pillow until the cannula came out of his nose and stuck to his eye or ear. I was frustrated. He needed the oxygen.  I needed sleep.  He needed sleep.  From about 11:00 p.m. to about 12:00 p.m. we fought over the oxygen.  Finally about midnight I took the cannula off.  I probably should have done it an hour prior.  The minute I took it off, he rolled onto his side with his head back at a 90 degree angle which is how he liked to be.  He put his arm around his bear and scooched back into me.  We were spooning and I had my right arm around him, tucked under his armpit. He peeked open an eye at me and it was so sad.  His eyes were so puffy and red. I turned the light off and hoped for a little sleep. 

The last photo of Willy taken while he was here with us alive

Right away I noticed the delays between his breaths were getting longer.  First they were 6 seconds.Then 7. He wasn't struggling.  Morphine allows for more effective breathing so I chalked it up to the morphine. I texted Todd who was working and told him what was happening. 

Shortly after midnight the breaths were about 7, then 8, then 9 seconds in between.  At that point something changed. I turned on the light and checked his fingernails and they were dark blue. I texted Todd and asked him to come.  He said to go ahead and call hospice.  I put my hands on Willy's chest and his heart was still beating, but very, very fast. He was still breathing but the breaths were getting fewer and fewer in between.

I didn't have the forethought to tell him it was okay to go. I wasn't there. But I told him I loved him.and kissed his cheek.  When I couldn't feel anymore breaths, I went in to get Ted and asked him to check.  The few moments that Ted was checking for a pulse and breaths, I was screaming.  The feeling is indescribable. You know. But you're looking for one heart beat. One breath. This is too quick. This isn't how it was going to go down. We were going to spend some time together the next few days and get him better.  

Ted just looked up at me and said he was gone. Grant and Gabby both heard me crying and came in to check.  I was absolutely not prepared to tell them anything so I just told them Willy was having a rough evening and to go back to bed. 

Todd came. Trish came. My father and his fiance came.  We woke the kids up and told them.  We waited for hospice to come.

The hospice nurse, Katie, came to check and call it. She called time of death and cleaned him all up, put him in his Marvel pajamas, tucked him into our bed with bear (and Todd brought monkey a bit later,) and we had four wonderful hours with him as a family. We took turns lying beside him and talking to him.  Ted went on a beer run because, well, you know, our kid just passed away. A beer sounded nice.

The social workers came and called the funeral home.  We asked the funeral home staff to not cover his head and let us escort them out to the car.  When we were ready, we all said one last goodbye. Gabby was the last one to hug him while he was on the gurney waiting to be taken out. 

We followed Willy to the car. It was a stunning evening.  Stars, clear skies, crispy weather but not freezing. We stood there all holding hands as they put Willy in the car. 

A new chapter started that evening.  More to come. I will want to write about the outpouring of support and the funeral planning. But for now, I wanted to share Willy's last week with all of you.

Peace. 

Fight, Willy, Fight!

I love fall.  Leaves, crisp weather, hoodies, football, hot chocolate, pumpkin everything, hayrides, pneumonia.... Wait, what??  Yep. Pneumonia.  For Willy that is. We've had a good, long run of fantastic health so it was bound to happen. And happen it did. 

Some background. 

Willy's lissencephaly is a regressive disorder.  This means his body's performance peaks, well, really at birth and declines slowly every day thereafter. Mind you, it's a slow regression and we've had a lot of really great years. (Remember? He wasn't supposed to live past 2 and he will be 12 in March!)  Cerebral palsy slowly destroys his muscles which means his ability to walk (he never walked,) talk (he never talked,) roll, (he used to roll all over,) suck, swallow, breath, poop, everything.  Everything you do is controlled by a muscle of some sort. The respiratory muscles are badly damaged in kids with these sorts of disorders and they usually end up succumbing to pneumonia and respiratory distress. (There's a sick special needs family dark humor joke in here somewhere - "if it's not the seizures that will kill them it will be the breathing - or lack thereof.")  

Willy's lungs started going downhill around 2007 or 2008.  We wound up in a cycle of hospitalizations that lasted the better part of three years. Usually it would start with a cold, a sniffle, a cough, and then next thing you know we're in the PICU on 10 litres of oxygen fighting for his life. It wasn't until we put Willy on pediatric home hospice services in the summer of 2013 that he got better. Irony or what? The hospital is so full of germs that once we broke that hospitalization cycle, he actually got better. We put him on hospice, created a DNR (do not resuscitate) order, and settled in for a very healthy and happy two years.

Part of the process of deciding to put him on hospice services was discussing end of life details. What if he gets an infection? Would we do a round of antibiotics? How aggressive would we be with treatments if he were to get sick? Would we go inpatient? If we did decide to go inpatient to fight something, he'd be kicked off hospice.  Luckily, we haven't been tested.  Until now.  This is the first time since hospice that he has been this sick.  In another life I would have been typing this from the PICU (pediatric intensive care unit) at Mott Hospital.  As it stands, with hospice, we have everything we need at home to take care of him.  We have a round of antibiotics, oxygen, albuterol for breathing treatments, morphine, and everything else that a pneumonia kiddo needs. And without the hospital germs. Win-Win? Perhaps. 

The rub is this. Since this is our first "test" of our hospice plan, it's a big deal.  What if this first round of antibiotics doesn't work and he needs another round or a stronger drug? Would we do it? Or would we say it's his body just saying no thanks. Keep in mind, his disorder is terminal. He is already well past his life span. Although we do know many lissencephaly patients who have lived longer than two years old, it is definitely a terminal disorder with shortened life spans. That fact factors into our decision making process. 

When Todd brought him back to me today (along with about a dozen machines and boxes of supplies,) we had "that" discussion again. He said the hospice doctor was out today and they discussed the options.  At some point, we will know Willy is there.  It's not now. Not yet. But it will be someday. Either he won't recover from an illness or his body will stop accepting nutrition. Keeping in mind quality of life, at some point, when his QOL is no longer positive and good, we will have some very difficult decisions to make. I don't think we're there yet. Willy still has good days. Yes, they aren't as plenty as they used to be but there are some. Todd gently reminded me today that Willy's really only awake - truly awake - about 6 hours a day.  And then it takes a lot to get him to crack a smile or engage. 

The takeaway from this should be positive and if it's negative, you're reading it wrong. Sure it's tough and we're all worried. It's also a lot of work. Round the clock treatments and medicine dosages. But I get to do it all at home.  When we switch off, Todd will get to do it at his home. Surrounded by our stuff. Not in the hospital. With the hospice staff coming to the house to check up on him. It's a wonderful thing. The last ten years have given us enough confidence to deal with it all at home. Ourselves. We could call hospice off, go inpatient, treat the hell out of the pneumonia and be as aggressive as we wanted. Maybe he'd respond to treatments, maybe not.  If we did, and wanted to go back on hospice when we were discharged, maybe we wouldn't be approved. Then we've lost the service. You see the rub here? 

We're going with hospice.  We have what we need here. We will take care of it for him, here, at home. We are four adults who love him and who can help take care of him with our opposite schedules. I can sit here and do homework with Gabby in between tending to Willy.  

Hospice isn't the right choice for everyone and I understand that. There is no right or wrong answer.  But for us, comfort measures and quality of life far outweigh life longevity. Hospice gives us the tools to create that world for Willy. 

For now, fingers crossed that the first round of antibiotics works and the pneumonia goes on its merry way.  If it doesn't, well, we'll decide what to do then.