I think I do an okay job with words, but today someone--a parent in our community of families with myotubular myopathy children--beautifully inscribed the reality of what we MTM parents go through on a regular basis. Many people over the years have prayed for and encouraged me and Christy as we cared for our children and see to their needs, especially Joshua's. But it meant a lot to hear impassioned words coming from someone within our circle.
Because Beth Littman Josephson said it so well, I'm reproducing her words here. Have the Kleenex nearby.
With the recent losses of some of our MTM children, I feel compelled to comment on the life MTM parents and families give the children.
From the pictures posted on Facebook with our children coloring or pumpkin picking, we are determined to give our children the best life possible.
When we decide to have children we don't know what kind of parents we will be. Most of the time we plan to have a child and perhaps return to work, or be a stay-at-home parent for a few years. No one ever suspects that most of us would be forced to be that stay at home parent who turns into a critical care nurse, medically supply dispatcher, nursing supervisor and scheduler, and ventilator mechanic. The new role thrusted upon is is daunting, and most of the time we pull up our sleeves and delve into the new world with gusto. There are no choices when it comes to making sure this child lives. Then as time moves on, medical specialists inform us of the path that we are now on. MTM parents know that the lifespan of our precious children is always in question. Given that understanding, we live life with our children as if today is the last opportunity to do that. And the that rebel attitude that now encompasses who we have become, we nor only bring this child home, we educate him. We celebrate birthdays in a BIG way. We invite friends and neighbors over to our home because we are PROUD of the person our child has become. This is our one shot to create hundreds of special times in the time we are given to be with our child.
Hundreds of pictures are taken in Halloween costumes that incorporate a wheelchair/stroller and medical equipment. Our child soon becomes a rebel as well with the bandana he wears over his trach. That rebel mentality brings our children through colds, fevers, hospitalizations, "not so great" nurses, and medical equipment mishaps. And no matter what, they smile. Our child becomes our hero and role model for a life lived fully and with a strong determined tenacity to enjoy every moment they have.
Terrible twos? Zachary used to "hold his breath" if he didn't like something. If he didn't like a new nurse? He would purposely turn blue and then smile after I would tell him that the nurse will not be back. Laughing at other's misfortunes (like when his father would curse or a glass breaks, or his little brother getting yelled at) was amusing to watch.
What a beautiful opportunity to be able to be included in all your lives, the triumphs and the battles, along with deep sadness and loss.
Would I change anything? I wish I could have given my son muscles that worked. Other than that, I wouldn't change a thing. To have been blessed with the most amazingly strong and funny son was a privilege few can share. My heart and love go out to all of you who walk the path and continue on that journey. Bless the children and their amazing families.