Remember John from last week? I posted the beginning of his story. Today, on the last day of Vaccine Injury Awareness Month, his mom shares an update to let us know where he is, sixteen years later. (If you have not read John’s story, you should read Part One and Part Two first, so you can appreciate how far he has come.)
Cheryl has one last thing for you to know before you read her story. She says, “This year both a neurologist in one state and a developmental psychologist in another, without either consulting with the other, both said John was not autistic at all. Both agreed he had suffered a vaccine injury that resulted in brain swelling and encephalitis resulting in the loss of acquired skills, leaving him permanent brain damaged. What we see and deal with today is the result of that brain injury. It’s a victory to hear such, and yet still a stab in the heart.”
Now grab a tissue and read how John has gone from where he was in Part One and Two to where he is today.
A couple of months ago my baby turned nineteen. This is the last year of his teen years and I am starting to realize, I am no longer thirty something. I think that for a long time, I have lived my life in a strange form of twilight nowhere land, waiting for my life to become normal again. I did that because I was waiting for John to be, well, John again.
You see, I see my son as two people. The child he was born to be and the child he became. John, was vaccine damaged as a tot and went from normal, speaking in complete 3-5 word sentences, asking and answering questions to a non-verbal, deaf-like individual with physical and health issues. I used to call him my breathing blob of humanity as there was nothing about him that was normal. Oh he looked pretty, very china doll like with his very pale skin and glass eyes that stared in a fixed position, but the life you expect in a child, just was not there.
Once you hit pit bottom there is just nowhere to go but up. Up, was a slow climb. I pulled John, pushed John and often carried John back up and out of the hole we found ourselves in. In sixteen years I managed to be on the forefront of a new medical treatment called bio-med, met some amazing ground breaking doctors, fought and lost the battle not to have my son vaccinated to attend school. Learned from that, how to home school a child in need of every service known to man to make any progress. Met Glenn Doman and found in him the belief that we only stop making progress the minute we die. He is right.
I learned to trust my own ideas and do my own research rather than rely on the ideas and theories of others. Slowly, I learned to enjoy life again and to enjoy John at whatever point in disability he happens to be in. I fully admit that my son should be a college freshman this fall, while I am still waiting to take him to kindergarten. I have slowly come to the grips of understanding, that ship, like so many others, has sailed for good.
I do not regret the tens of thousands of dollars we spent on John looking for answers and help to recover him. I do regret that in all the days of rush off to therapy, cook gfcf food to take to the next therapy class, hire new therapy people for the home program, talk to medical professionals, call the state to fight to get John in school, that I forgot to enjoy my son. I was so busy waiting to get John back to start living, that I simply forgot this would be his only childhood, his only life, and in my fight to recover him, I lost that childhood, warts and all. I deeply regret that.
When John turned nineteen, we had a party for him. A real teenage party at the lake complete with three other teens and a jet ski and boating. We had an all day run of fun on the open water that ended with a cookout. It was the kind of normal birthday I would have given normal, recovered John. In my heart, John is normal and recovered, not the disabled son I longed to see change back into the person he had been.
The reality is, we did get John back, in personality. He is the same quick to smile person he was as a baby. He is also the child that can pout and cut you with a look, just as he could as a tot. That personality trait is a family one. He loves life, enjoys the company of people, has a passion for shopping most women would find wonderful. I tease, “Go” is his middle name, he loves to be out so much. That is a huge, huge leap from the preschool years of John unable to leave the house or ride in the car without blood screaming cries. And go into a store, no way. For many years going out in public was the impossible dream. Now it’s a must for John each day.
I would like to say he regained speech. I would like to say he regained his amazing fine motor control. I would like to say he is potty trained. I would also say, I have learned to cope without these things. I am fairly sure I am coping for the most part.
My one prize in John was that he recovered so much by age 10 that he was able to dress himself and was potty trained. Sadly a round of very brutal seizures last spring cost him both these skills. I laugh as I recall being a cloth diaper Mom for all those years and now am buying Depends. There is irony in there somewhere.
I smile at people who stare at my full grown man son with a goatee and mop of curly hair as I slowly feed him in public. I want to wear a sign that says “Vaccine damage, it’s for real” but I don’t. I make a point of walking slow with John so he can balance and not stumble and fall. I smile big at the people who brush past us wishing we would speed up. I want to tell them what a miracle it is to be able to walk, but I don’t. I just enjoy and rally in the fact that my son can walk, he can be out in public and he is happy.
I would like to say I have let go of my dreams to hear John speak and have a conversation with me, but I haven’t. What I have done, is learn how to communicate with hand touches and looks and smiles, and I treasure this as much as I did his first words. I have learned to take nothing or any day for granted. For what gifts we have today may be gone tomorrow. I think knowing that fact makes the good times even sweeter. It makes the memories even better.
I am pleased to say, I’ll never have an empty nest. I am also scared of dying and leaving my son behind. Somedays I am so angry at the lies, and cover ups over the true facts about how many children suffer a vaccine injury. Other days, I just let it go. I can’t change what happened to John, all I can do for the parents new to parenthood, is share his story and hope they educate themselves.
Life is very, very short. I used to think my life was an endless hardship, with no light at the end of the tunnel. I used to think I would start living once John recovered. What I know now, you live whether you want to admit it or not, what you do, is living. Your attitude toward the circumstances in your life will either enhance who you are, or break you down. I would rather live a life building up those around me, including John, than to pull people down until I can stand up. John taught me that. Because of him, I can stand tall now. I stand in the light at the end of the tunnel, the light of a thousand parents of disabled children who went before me to make the journey brighter.
I still have hard days with John. He has big mean ugly seizures, and sleep issues. He has no clue when he has to go to the bathroom and has had a few accidents, in pubic places. Somedays I get so tired I don’t think I’ll make it. Then John jumps on me, smiles in my face, looks me dead in the eye until I am forced to blink…then he laughs at me. I know at that point, that all is right with the world. No, I don’t have the wonderful happy ever after recovery story, but I have John, I have the personality that was lost for so very long, back. For now, that is enough to give me faith that anything is possible, even full recovery.
Until then, I am content and happy. If it never happens, so be it. I am just growing old. In the words of Steely Dan from the song Hey Nineteen…. “Hey nineteen, no we can’t dance together, no we can’t talk at all, please take me along as you slide on down”…and I know he will, John will always take me along and I am one very blessed Mom to have such a beautiful son, beautiful inside and out.
If you’d like more information about vaccines, you can view The Greater Good, a documentary, for free this week (through November 5). I haven’t had time to watch it yet, but I will!