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.