As I prepared for my trip and told people where I was going I could see the pity on their faces as they heard about Jack's life spent on a ventilator, confined to bed and I could see they just didn't know what to say. Although it is true that none of us would wish to be immobile, relying on a machine to breathe, there was so much more to Jack than his disease, muscular dystrophy, and the condition of his life on earth. I want people to know that. Jack had an amazing spirit that was so evident in his sparkling Irish eyes, and beautiful smile! He made people happy because he loved them and was glad to see them. A simple truth we all might want to remember. He also reminded people to see all the things they are so lucky for, like the freedom you get from a healthy working body. Most importantly he enjoyed life and was happy. That's not to say he didn't suffer, surely he did. We all do in different ways at different times in different amounts. It's an inescapable part of being human.
The title of Ainsley's blog is Happy to Be Me. It has always been my mission to show the world that Ainsley is happy to be who she is, with all her "imperfections". Despite suffering through painful surgeries and the physical limitations imposed by her conditions she can live a good and meaningful life and do so happily. As her parents it isn't always easy being her caregivers, that is true, sometimes I even complain a bit but we do the best we can. We truly love Ainsley as much as we do our two other children. I don't think people always realize or believe that. There has never been any question in my mind that Ainsley is happy to be alive.
You may or may not be surprised to read that I've had many people come out and ask me if I "knew" Ainsley would be "different" before she was born. Before they go on, I already know they are working up the courage to ask next if I would have "terminated" if there had been some way to know. I know they don't mean to be hurtful but to ask the question implies that perhaps they think I should have or at least that there may have been cause. After all that is not a question any person would ever normally ask a mother. I myself was an unplanned pregnancy and having been given up for adoption, I am personally against abortion. I would never end my unborn child's life for any reason. My life's perspective has lead me to feel that all babies should have the opportunity to live and what happens from there is up to God or fate.
People ask the question because they know the truth is that our society doesn't value people who are different. The more different the more clearly the person is devalued. But there are a huge number of pretty average people that live a life of inner turmoil because they simply feel "different" even though they really aren't and they struggle to feel like they fit in. I also see that at this time so many people appear to feel lost in this world. We all long to make a difference and sometimes don't know how. I have learned through Ainsley's life and our many friends who were born into this world "less than perfect" that EVERYONE can make a difference. In fact sometimes it is the people you don't expect to make a difference that do so in profound ways. Sadly many "normal" babies grow up to be miserable adults that commit horrible acts that impact the world in countless negative ways and become far more of a "burden to society" than any special needs or medically fragile child ever is. The measure of a person's value cannot be predicted by their perceived "normalcy" nor can we predict the path any child's life will take when they are born.
It's ironic that we are taught that we must be "normal" to be happy despite the obvious fact that so many "normal" people are not happy. Although I can see this clearly now it is only because of the path my life has taken as Ainsley's mother. I have struggled. After Ainsley was born I really believed that surgery would fix the shape of her head caused by the craniosynostosis and she would look like she fit in (there was no way to foresee the complications it would cause with her eyes), she would get the trach out and life would be "normal again". I despaired when things didn't go the way I hoped because I believed in the mythical promise of "normal life" as the route to a good and happy life. It took a few years for me to accept that my life was forever changed and a bit longer to realize that it was going to be okay anyway. Ainsley made me rethink everything I knew about what it means to be happy.
Over the years I looked for inspirational stories of children overcoming their medical conditions to give me hope. I found many of them. Plenty of kids who got their trach out and went on to live a typical life. A woman with cerebellar hypoplasia (like Ainsley who was written off as a baby) who is now living happily, married, a business owner with two masters degrees. A son with CP who lives independently working as a graphic designer in another state despite being wheelchair. There are many such stories. But there are also many kids like Ainsley for whom life is too short. As parents we cannot know what the future will bring. Maybe it's even better that we don't. And that doesn't just apply to our special needs or medically intensive kids. Wherever life leads us it is truly the quality and way in which we make the journey that matters, not the destination. For all of us.
Because Jack was born, and lived, there was an amazing chain of events that occurred. His amazing mother Ann looked for ways to connect with other families of children with medical issues, and she did. That support saved and uplifted so many families. Ann saw that medical care could be improved and started a program to enlighten new resident doctors of the importance of doing their work with compassion, care and kindness. Those doctors will go on to care for countless other children during their careers. Ann started a non-profit organization that provides respite opportunities for overworked caregivers when they need it most. Ann shared her journey through her blog Jack's Journey and Then Some. She inspired us to live a good and happy life and also showed us that we can do hard things even when we don't want to. There is a ripple effect from Jack's life and we will never know all the ways in which this boy positively impacted the world.
I have witnessed that all of us have the power to affect the world and people around us every day through small actions that create a ripple that goes out into the world and affects it in unknown ways. We aren't as insignificant as we sometimes feel. The small things go the furthest. We should aim to spread love and acceptance for that is really what we all want most. We each only get one life and one opportunity to make it count. When we reflect on the end of a life there is an opportunity for us all to take stock and reevaluate our lives and those things that are most important to us.
*****
Friday we set out together on a memorial hike through the dusty rocky desert path. After the long hot hike in the sun up the mountain with Jack's Woody doll we gathered in a circle to share very emotional words about how we knew Jack. The sun started to set as we made our descent, the temperature dropped as we made our way down in near darkness. The process was cathartic.
Some members of the trach sorority.
It was hard to say goodbye.
I picked up this rock during the hike and brought back a small one for each of my kids. I put it where I can see it every day to remind me of this special trip and as a reminder to enjoy the journey wherever the path leads.
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