Today I want to share with you an experience that will hopefully touch your soul as it has mine.
Why should we care about rare disease research? Hopefully you will find the answer in the words below.
|Cathy and her son David|
Not too many people know this but David left us with a profound message after his death. I share this to bring/give you HOPE. There are so many things that happened over the last 17 years, that I could never begin to fully explain them all. There are just too many to include in this post. I learned that there are no coincidences. Some of these events would be called a"mystery"....the "unexplainable."
After the initial perforation and his recovery, Dave was afraid that something would happen to him, that he might die. So, I would sit with him at bedtime every night until he fell asleep for the first couple of weeks after he got home from the hospital. He eventually gained all his strength back and was doing great. He wasn’t afraid anymore. Then it was time to go back in the hospital to have the colostomy reversed.
The weeks before his death David was fully aware of everything, he never hallucinated or talked crazy. The day before his death he started talking in his sleep. I thought he was asking me something so I went over to him and woke him to ask him if he was talking to me. He opened his eyes and looked right at me and said, “No mom, when I close my eyes I see a whole other scene and I’m talking to “THEM””. This took me aback and I regretted that I never asked him who “they” were.
My sister-in-law and I both worked for our local school system. The next day after David’s died a teacher at his school went into the computer room to work on something, when he started the computer this poem popped up. He must of read it and then closed it out. When he was finished he went into the office that’s when he found out that Dave had passed away. He told them about what just happened and he went back into the computer and printed the poem out. A friend of my sister-in-law called her to tell her what just happened and then she went to get the poem. She called me to tell me and I told her that I couldn’t hear it right now. My brother told me it was very profound (it seemed to mean different things to different family members and it affected my brother as well) I asked him to read it at his funeral if he would.
Now understand that Dave wasn't a reader or a writer the only thing he ever read on his own was the stats on his favorite hockey team,the Philadelphia Flyers. So, I was really reluctant to believe that he had written this poem when he went back to school in May (it was dated June 7th, 1996 for a class project). He didn't tell me about it, he usually always told me everything...this is what was really strange.
At the end of Dave’s funeral at the cemetery my brother started to read his poem. As he read his voice started shaking and cracking from the emotion he felt. My brother was always tough as nails and never showed his feelings. I was so moved that he was so deeply touched by these words. What I heard the most was the last few lines that touched my core and it was as if I heard Dave's voice whispered in my head...saying, "See Mom, now I can do ANYTHING"
I immediately knew it was in response to when I was in that conference room (3 days before his death) with the doctor and the Geneticist.They told me that they thought Dave had vascular EDS and that at any time something could happen to him. That if he survived he would be very limited and would never be able to obtain his dream of playing ice hockey one day. After that blow, I had to suck up all these emotions so that Dave wouldn't see the anguish on my face, because he knew me so well. He never knew what was said in that room that day. He never knew about vascular EDS.
I knew that's what he was telling me in that poem where the answers to all the questions that had been going around in my head. That he saw God's face and He's the blinding light that he speaks of. And that he reached the goal...HEAVEN, and that it was meant to be and sadly nothing could of changed this, and that he NOW can do everything that they told me he would NEVER be able to do.
Two years after his death, I was asked to call this mother who had just lost her daughter because of EDS. Within the first five minutes of our conversation she said to me, “Then she started talking to “THEM”. I almost feel off my chair as my breath was sucked right out of my body. I asked her, “WHAT”, who were they?” She said her daughter told her, “They were her three friends and they were angels.” She then preceded to tell me everything her daughter told her about “THEM.” That they took her up to see God, it was a long staircase that she walked and when she got to the top…God was as bright as the sun. No one in her family had believed in God prior to this. She told her mother and sister that God was real. She said that there is an angel for every problem and they are sent to help. The only one she mentioned to her mother was the angel for a broken heart. She began to sit in the sun or in front of bright lights…she at peace there and would sit for hours. It reminded her of her visit with God. She kept asking her if she would be alright if something ever happened to her, she was worried about her mother. She was preparing and helping her mother for what was about to happen. She died on Christmas night…her name is Mehsonia and she was 16 years old. Dave and her were born the same year.
When Dave died, I died and so did my faith. It took me many, many years to absorb the full impact and meaning of his poem. I analyzed it till I was insane and finally I came to believe that he did in fact write it, but I believe the meaning was meant for after his death. It is just too profound, so very spiritual and for him not to tell me that he wrote something so AMAZING...he wouldn't have been able to wait to share that with all of us. This is why it was so very hard for me to believe. He just wouldn't do that, so the only explanation was that it had to be inspired…this was the gift that God allowed David to leave for his father, his sister, me…and now all of you!!!
His name tells how it is for him
But he feels so strong on reaching his goal
There are many things that happen to him
but he just pushes on
The goal is like a shining light,
that is blinding him
The only way of stopping the light
is to reach the goal
Something happens and he thinks about stopping,
but the way is now drawn for him
and he knows after getting through this
has helped him see the light
even brighter now
The way he feels now he can do
Written by David Daniel Bowen III on June, 7th 1996
Vascular Ehlers- Danlos Angel
Vascular Ehlers- Danlos Angel