 |
| Daddy, Ella, and Dr. Kuntz |
The world of SMA can run emotions high and low all within a matter of minutes. The reality of the disease, if allowed to be pondered for what it is and does, can remove you quickly from this world and hurl you into a place that is deep, dark, and full of anguish. On the same note, the will and determination of those who suffer from it can bring you to a high place full of light and life, eliciting hope, compassion and perseverance.
At Ella's quarterly multi-disciplinary appointment (Lurie Children's Hospital) we sat in the examining room waiting for Dr. Kuntz and her team. They are extremely efficient and we are never waiting for very long. Ella, delighting in being there as she anticipates the visitors and seeing her friend Scarlett, is busy wheeling around the room. Lindsay and I take a moment to check our phones in an effort to stay connected to the outer world. And there it is...an SMA reality that has become all too common of an occurrence...another child has passed away from SMA. That would make five kids in the past ten days. 5 in the past 10.
I look over at Ella. She spies my gaze, gets herself over to me, and asks to play a favorite wheelchair game called, "Rock and Roll". We commence. The faint knock on the examining room door stops our game as the rounds begin.
Our reports to the various therapists and doctors are of Ella actually improving in many areas. We proudly report that just recently she beat a cough of 10 days and a fever of one day without a trip to the hospital. We sit and watch as she dazzles her visitors with her conversation, her wheelchair skills, and her physical improvements...namely her walking (with Lindsay's assistance). We find ourselves reporting that she is doing well and are told to keep on this path since it seems to be working well for her.
All in all it was a very good visit as we walked away just as we walked in...in other words, we don't have to change much of what we presently do.
 |
| Ella examining her baby doll |
In light of some of the recent developments in SMA research for a cure and/or treatments we have shifted our focus with Ella a bit. If indeed the medical community can successfully treat or even cure this devastating disease within Ella's lifetime, we want her to be as ready as humanly possible to accomplish as much as she can with whatever they have to offer. While she may never regain what she has lost she may very well be able to work quite well with what she has left...only time will tell.
If they can stop the progression of the disease then maybe we can strengthen what she does have. This is our vision.
When our appointments were over we visited Ella's friend, Scarlett, who was also there. Both girls were excited to see one another and it was sweet to see them interact. They talked, and more importantly, they laughed with one another.
 |
| Gavin, Scarlett, Scarlett's Mom, and Ella |
We know that Ella is doing well right now...we are so very grateful for that. We know that every case of SMA is different. We know that every family who faces this disease has challenges beyond words. We also know that so many people have cause for sadness and despair as they face the lifelong healing that comes with losing their child.
The Holiday Season calls for grace, compassion, comfort, and joy. It calls for each of us to look at more than just what is happening with our own lives and extend ourselves to others. As we traverse through this season we look to God and thank Him for the life that he has given to us in Ella and at the same time we ask that He cradle, in His arms, those who have lost their children to SMA.
