This is an excerpt of my dedication celebrating the life of my son, Joshua who passed away on April, 12, 2013 – as presented at his services on April 18th, 2013.
A couple weeks ago Jess and I were at a meeting regarding Josh’s education plan. Part of the standard process for reviewing special education goals at Josh’s age is talking about preparing students for a vocation. When this came up, Jess and I kind of laughed and I remember making some sarcastic comment about figuring out how we could get Josh to mow the lawn first. However, there was a moment in the hospital last week when I was with Josh before he passed and I thanked him for all he had taught me. Reflecting on that, I realize Josh did have a vocation – he was a teacher.
What he taught others
It started right when he was born. As many of you know, during his first few days Josh had to undergo a number of surgeries to address many medical issues. Around the 3rd or 4th day after he was born and Jess was discharged, Josh wasn’t doing too well and the doctors didn’t think he was going to survive. He was unable to regain consciousness and they told us we should think about taking him off life support. We went home and tried to figure out how you begin to think about a decision like that. The way they described his situation, it sounded like he didn’t have much of a chance to survive. We didn’t want him to suffer and thought their recommendation was the right thing. When we went back to the hospital though, Josh not only had woken up but had pulled out his breathing tube. It was the first of many times when Josh would help us with how to make decisions about his care and his first teachable moment. He showed such spunk and fire that it was clear we needed to do everything possible to give him a chance at life. After visiting with him we went into a meeting with his doctors. I think there were almost 10 of them and given Josh was so complicated, they were all senior doctors – head of pediatric surgery, head of neonatology, head of pediatric neurology, etc. We went into that meeting pretty agitated given the focus was so much on the negative and not on the possibilities. As Jess and I sat in the conference room, a social worker put a big box of tissues in front of us. I slid them to the side and was thinking to myself, the way I think this meeting is going to go and the way they did was very different. I told them we weren’t giving up since Josh was fighting and I insisted that if anyone in the room didn’t want to fight for Josh as well to leave and get us someone who would. I think some of them needed those tissues, but we didn’t. Retrospectively, we were naive as to how much Josh would need to survive against the odds and what a miracle it would be for him to come home, but it was actually positive for us to just move forward. I think it was about 6 to 8 weeks later that one of those doctors came by to talk to Jess and me when we were visiting with Josh in the NICU. She told us how Josh’s situation was so unique. She mentioned that most kids with such severe issues didn’t survive and that was her view by default. She recognized that Josh was different and he had taught her to think about things differently – to look for chances and to see not just the limits but the possibilities.
During those first few years we had a crash course on taking care of a special needs child with so many different medical issues. There really was no precedent on how to care for a kid like Josh and it was hard to find information. Jess and I decided to build a web site called “Joshua’s Journal” where we talked about Josh, his ongoing progress, how he was defying expectations and the things we were learning along the way. We got such a great response from that. I remember a doctor from a hospital [I think it was in Florida] writing to us and asking questions that Jess responded to about experiences with Josh to help another couple with a child who had some similar issues. One morning I was checking my email before work and we got a note from a family in Australia. They had been struggling to find information that would help them with their special needs child beyond what the physical and medical limitations meant and more about what the possibilities were. They came across Josh’s Web site and found hope and inspiration in the stories about Josh’s life.
I could tell you a hundred stories like that and specifically about things he was never supposed to do but did. He did things in a way that made you think differently. Simply put, he gave inspiration to others. I know some of you have these stories as well – some you’ve told us and I would guess others we don’t even know about.
What he taught me
I have been asked many times and in many ways how Jess and I have been able to endure through some of the challenging times and stay positive. Many have also asked how we weren’t more depressed about his medical conditions or physical limitations. Essentially, it comes down to some of the things we have learned from Josh like the fact that we don’t choose our circumstances but we do choose how we react to them. We didn’t focus on the things Josh couldn’t do but instead we focused on the things that made us proud parents –
- To have a child that is happy – and I don’t think I have ever seen a happier kid than Josh
- To have a child be successful – for me I would define that as making a positive impact in the world and touching the lives of other people. He certainly has done that. He has touched more people during his 14 years than I will during my lifetime.
- To have a caring heart – Josh may have needed a lot of care and attention but in his own way, he gave back in every way he could find.
- He could give you a moment of encouragement like breaking out into a spontaneous laugh at times when you needed it.
- We watched him holding still in my mom’s hand as she faced cancer which was amazing to see since he was always moving.
- We even saw it at the end of his earthly life. On Friday, consistent with the approach throughout his life, Josh helped us with his passing. As his situation worsened, Jess and I wrestled with the instinct to fight as we did when he was first born and so many times after. We struggled to accept that is was time for him to move onto his next life, but in his own way he let us know it was OK – that it was time.
- As Jess and I drove home from the hospital early Saturday morning, we were very quiet trying to figure out where we start from here and how we pick up the pieces. We got home around 3 a.m. and it was so still and quiet outside. Just before we closed the garage and went into the house, wind chimes started going off and they did so for about a minute even though there was no breeze or wind. Jess and I looked at each other and she said, “did you hear that?” I couldn’t even answer. I thought to myself, that’s Josh. He is still providing encouragement and telling us once again that it is OK – just put one foot in front of the other. Also, in his usual mischievous style he was saying, “hey look what I can do” just to make you smile!
I wouldn’t ask or want more from a child than what Josh gave us.
I have so many great memories of Josh
- The “last hooray” (as Jess and I called it) when he would get so hyper and happy at night right before falling asleep. He would laugh and kick his legs and then all of a sudden be snoring a minute later.
- Every morning him waking up and having the biggest smile and showing those big blue eyes. So many times I would think, if Josh can be so happy facing the day, then so can I.
- The joy in his face when he was reaching for and hitting his balloons and his beautiful laugh that made his belly shake.
- All the little things he would do that would make Jess smile.
Also that Josh was a teacher and I reject the notion that he couldn’t speak. You just had to listen beyond convention. He had a lot to say and most notable that life is not about limitations, not about the things you can’t do – life is about possibilities. It’s OK to be different and it’s OK to do things in an unconventional way because in the end, it is all about the things you CAN do to inspire and touch the lives of others. That’s what our son did – he had a high yield life!
April 18, 2013