Today is the 5 year anniversary of the day our lives would be changed forever. When Liam was first given the diagnosis of LGMD the future was very scary, and unwelcoming. I was blind to what life would look like with a child whose body would constantly be changing, needing more assistance, and failing him.
I was terrified of my own weaknesses. I honestly didn’t know if I would be up for the task of entering into this new world that was not designed for my child. I have had many days where I still question my ability to do what is best, sometimes I just get by. Other days I hold on tight and remember that tomorrow is not going to get easier if I don’t learn to problem solve now.
We measure life is steps. How many steps will it be before Liam can take a break? How many steps before his legs start to sway, and he shows his fatigue? Where are the steps that will unfortunately block easy access to the fun or necessary movements in life? What steps do we need to make to ensure that his care givers know how to keep him safe? Step by step we do our best to prepare for the next step.
A painful reality, but also benefit, of LGMD is that we are slowly introduced to our new normal. We grieve, problem solve, and then fight. We have been given a view of what the future might look like and this has given us even more focus on what we need to do to be prepared for Liam’s needs. Mark and I will do our best to stay ahead of Liam’s extra needs and we hope that we meet them with optimism and hope.
Five years ago, our future changed. My heart still hurts every day for the uncertainty of Liam’s future and the pain of his heartbreaks. Most importantly, my heart wishes for the courage that I know I will need in order to be the best mom for him. The mom that Liam deserves.