The last couple of days have been tough. Everything is slowly creeping up on me again. Every now and then, every day situations act as a trigger and everything comes flooding back.
Yesterday I visited a residential home. Nothing out of the ordinary really. It’s truly wonderful seeing the older generation and hearing all their stories of years gone by. However, this was enough to give me that heavy heart feeling and I could feel my eyes welling up. The effects of Duchenne hit me like a brick wall again. Knowing that Hugo will never grow up to be an old man was enough to break my heart again. He will never be able to tell his life stories to a younger generation. Having a child who potentially only has 20 years of life left is impossible to ever come to terms with. There are so many things that he will never be able to achieve and milestones that he will never be able to reach. It’s something I don’t think I will ever accept.
I managed to hold back the tears and pull myself together. However, tucking Hugo up in bed that evening finally reduced me to a sobbing mess. I laid next to him sleeping for what felt like forever, holding his hand and stroking his cheek with tears coming from nowhere. That same feeling of ‘why Hugo’ came back, he is such a beautiful boy who does not deserve this Duchenne curse.
I left Hugo’s room and just collapsed in a heap in our bedroom, and just let it all out. It’s the first time in weeks that I’ve actually just cried over this whole Duchenne mess. A combination of constant appointments, making big decisions and daily struggles just proved too much for me this week.
I’m hoping a weekend of chilling out with my boys will give me another few weeks of strength. I’m not ashamed to admit that sometimes I simply cannot fight my emotions any longer. I’m certain that over the years, Duchenne will repeatedly break me, but those times are just a sign that I’ve tried to be strong for too long.