It wouldn't be a complete story without including how Shane lives on and how I survived grief.
Yes, that's "survived grief". Because not everyone does. There is a word for the loss of a parent (orphan) or the loss of a spouse (widow/widower) but no word in the English language for the loss of a child. I thought depression from raising a special needs child was hard.... that was a cake walk compared to grief.
I wish I could say that Jeremy and I made it through grief together, but we didn't. We both handled it in our own ways, away from each other. We were still young - only 25 when Shane died. Too young to cope with something so horrific. My entire world had revolved around Shane and then he was gone. People gathered around us when he died, then they were gone back to their normal lives. The world kept going on without my son... didn't everyone know he died? How could they act like nothing had happened? Jeremy went back to work and I as home. Alone. All day. People get back to their lives and stop checking in on you after a week or two. It's human but being alone in grief is like solitary confinement and it's you alone with your memories, thoughts, regrets, grief. I kept waiting for Shane to walk down the hall with all his toys or bang a door shut (which he always did when someone left a door open). I thought I heard him blow raspberries. I found his toys under the sofa where he threw them. His formula was still stockpiled in the kitchen. His schoolwork still stacked up. His dirty clothes still in the laundry. Wasn't he just right here??? Every day felt like it took me farther and farther from him. We were so blessed to have so much time with him and to have him home but his memory was everywhere, there was no escape. Not at home, not at family members' homes, not in the car, not even at the grocery store... he was everywhere and there was very little respite from the suffocating memories and grief.
Making it harder was having a tremendous amount of guilt for being a grieving CDH parent who had a ton memories and photos and time with my cherub when so many hadn't. I didn't fit in with the survivors anymore and I didn't fit in with the grieving parents either. I was in between both worlds and I now knew enough to be able to support almost any CDH family from first-hand knowledge. It was a degree I didn't want. I felt like I couldn't/shouldn't talk about Shane because his story terrified expectant parents and parents of survivors and saddened grieving parents. I ran a support group but needed support myself. I was a mess. Don't get me wrong, the charity members were amazingly supportive but how could I lead now when I was so weak? I had been so full of myself, so sure that I had some secret weapon to beat CDH. I was put in my place. I knew nothing, I probably never did. I had just tried my best to be a good mom and we were blessed. It was never in my hands.
Jeremy and I tried to make it work but we didn't have the coping skills or maturity to stay married. We were still just 25. Too many bad things had happened to us during 7 years. We only reminded each other of pain. We haven't talked for 10 years now but I wish we did. He's the only other person in the world who knew and loved our son the same way I did, has the same memories of him that I do. We will share that always. I wish him well and hope he found happiness again.
The charity secretary at the time, Judi, took over for me
for a while and did an amazing job. She drove to my house when Shane
died - she was the first person I called other than my parents from the
hospital. She was an anchor for me through everything and being a
grieving CDH mom herself, she knew what to do, what to say. We were a
great team and she had unlimited energy and passion to help CDH families
like I did. 2 years after Shane's death to the day, Judi was in the
Pentagon during 9-11. She called me during the event, terrified.
That's the type of friends we were. She survived but was sickened by
asbestos and is no longer involved with us because of severe
disabilities. I really hate September 11th; it took 2 people from us.
Within those 2 years, I also lost my father-figure, my grandfather. My baby sister was diagnosed with terminal cancer. Judi started becoming very ill. I did a lot of driving back and forth to all of them. Alone. Being alone in a car with all your memories and grief is hell for a grieving parent but I learned to cope with it.
What got me through when I really had NOTHING left? My sister needed me. Her 3 kids needed me. She never knew it but she saved me. Watching her fight so hard to live made me feel like an idiot wanting so bad to give up. God didn't hear my pleas to take me instead of her, like He didn't hear my pleas to take me instead of Shane so I had better straighten up and get out of my self-pity hole because she needed me. When she took her last breath after fighting Rhabdomyosarcoma for 2 years... I felt Shane in that hospital room with us. I know he was there to come get her and no one will ever convince me otherwise.
After she died, grief set in again. Now what? In all it was about 5 years of non-stop rolling waves of grief. It took me 2 years to go back into Shane's room and only then because I
had to move. Packing up his things was like burying him again. Saying
good-bye to my family, my home... it truly almost broke me.
But it didn't. It took me a few more years to grieve my sister and grandfather now too and get my life back together. During this time the charity work slowed as I focused on helping with my sister, her kids, divorcing, getting a job, moving, surviving. Judi was sick and unable to help. I asked for volunteers, I asked for help and no one stood up. 11 years later I still get comments about how CHERUBS wasn't there for a few years (we were here, the on-line support was still there).... but I was just a young, grieving mom volunteering to try to help others when I could. I did the best I could at the time.
Fast forward a few years.... and I DID survive! I became stronger, independent, self-sufficient, ran my own company and slowly rebuilt my life. I got up every day and forced myself to look forward instead of backward. I wasn't going to stop living too. And when I was able, I grew the charity more as I could. Grief never ends. You never stop missing your child but it does get easier to cope with and manage grief. There comes a point when you stop crying and start smiling missing your child. I don't know exactly when it happened for me... maybe around year 5. But it happened. I wouldn't trade a single, solitary minute of my life with Shane or my grief if it meant never having him. He was and always be the best part of me and the biggest part of my heart.
8 years after I lost Shane, 6 years after Jeremy left... I met Craig. He gave me my laugh back. He taught me how to have fun and enjoy life and see there are other things in this world except CDH and grief... imagine that! We were married in 2008 and I became step-mom to twins, Braden and Garret, who are now freshmen in college. I get to be a step-mom to these 2 boys I love as much as if I gave birth to them - even though they were teenagers when I got them. Let me just say that dealing with "normal" parenting issues has been an eye-opener but I feel so blessed... normal stuff like teenage years and bad grades and smart mouths! Not hospital stays, surgeries, therapies and feeding tubes. It's a completely different world that I love equally. Having a family again means everything to me. I have 3 sons and a husband that I love more than anything on earth.
I never had more kids of my own. I desperately wanted to but it wasn't meant to be for me I suppose. But I have 1000's of kids through the charity, my boys, my nieces and nephews. I am surrounded by a lot of love and a lot of children... what could be better than that?
Now, I work just 1 job - at CHERUBS, so that I can have a "normal" life and time with my family. Not that I don't still work 60 hour weeks sometimes! :)
I never thought I could be happy again after losing Shane. I never thought I'd have a family again or a life that meant anything without him. I was wrong. Now each day doesn't take me farther away from him but closer to him.
I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 
I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 
