We are just now getting back to normal after our incredible trip to NOLA to hang out with the truly generous and gracious Team Gleason! It was an experience we will never, ever forget and Steve now has a place in all of our hearts! Miller keeps looking at our pictures and videos from the weekend and asking about “his friend Steve” and when he will see him again. Those two had an immediate connection — Miller doesn’t normally let anyone hold him, especially if moms are around, but he went straight to him on Friday night when we met for the first time and sat in his lap for well over an hour, on two different occasions! During the game Miller reached over and put his hand on Steve’s hand = my heart in my lap!
The weekend was very special, but it was also emotional. It was so good for our soul, and heartbreaking at the same time, to make the personal connection between ALS and SMA. Both diagnoses seem especially cruel in different ways: with ALS, a person lives life as if he will live forever, and it is snatched from him one day with a diagnosis that is swift and final; with SMA, a baby never has the chance to walk or run, and in many cases, his life is cut way too short really before it ever begins. It was hard to think about the progression that brought Steve to the point he is now, in 3 short years, unable to move any part of his body except a little movement on his left hand to maneuver his wheelchair, and his eyes, which he uses to communicate through an eye gaze program on his computer. Oh, and his smile. Oh, that smile! I know without a cure Miller will also get to that point (I hope he will always have his smile, too!). We’ve gotten really good at living in the moment that we sometimes forget what the future holds. Maybe it is denial. Maybe it is confidence that we are close to a cure or a treatment that will at least stop the progression. Maybe it is just that we have truly learned to live in the moment. Whatever it is, the glimpse of that future hit hard this weekend. But something really positive occurred, as well, through Steve’s example: what many consider a “hopeless” diagnosis doesn’t have to stop life and can actually be used as a way to better the world. Steve embodies the path that we chose for our son after the initial grief: we will not be defeated by ALS/SMA, not change a thing about living the life we had imagined for our son and we WILL show the world that disability does not mean a person can’t be an integral part of our society! Steve is real, he isn’t in denial of what is to come but he also isn’t focused on the end, rather the journey. We are so grateful to be able to call Steve and his family our family now. No White Flags!!!
Leading up to the trip we have been busy as usual. One notable appointment was our semi-annual appointment at Shriner’s Hospital for Children in Greenville to meet with our orthopedic surgeon, Dr. Pete! Great, great news–Miller’s spine is still as straight as any 2 year old’s would be! We were beside ourselves when this was reported to us from the sitting x-ray! This is one thing that we know will inevitably fail as time goes on, but the longer we can keep Miller growing and his lungs unimpeded by a curving spine, the better! So needless to say, the long drive to the appointment was well worth the good report!
Miller also successfully recovered at home from a small cold. We are so grateful for the equipment we have at home (cough assist, CPT cups, respiratory vest and suction) to get him well without a hospital stay! He was over the fever within a couple of days but the cough and runny nose are still hanging around, going on 3 weeks! So we are still doing treatments but he is doing great!
As you’ll see from the pictures, we had a lot of fun making Miller’s halloween costume. He was a fireman, but if you ask him, he was a firetruck! Thank you Honey & Papa for all of your hard work that went into the firetruck!