When you have a child with a life-limiting illness and young life expectancy there’s a lot of emotion and heartache around the diagnosis. I’ve never hidden the fact I went through (and encourage others to) a phase of grief. It was important for me to have a period of time feeling sad and readjusting my hopes and dreams for our son. Unfortunately, for people in our situation, a lot of that revolves around the fact you hear a lot about what your child ‘won’t’ be able to do. As with everything, if it’s put in a negative way you can only think of the negatives.
For James and I it was never about pushing Freddie to achieve milestones to prove doctors wrong or because we thought it would improve his quality of life. When we were told he was unlikely to walk or talk we accepted it and didn’t seek comfort from people telling us ‘sometimes, Doctors are wrong’. It genuinely didn’t bother us, because we just wanted our son to be happy and live as long as possible. I think, when you’re told your child will have and short life, the priority immediately becomes about quality and not long term achievement.
I suspect our acceptance of his prognosis was partly aided by the fact that Mito kids fatigue, and with that they are likely regress. Something we never wanted to see Freddie to go through again. Pushing him too much in terms of development there would risk that happening, especially if he was also poorly or still having regular seizures. So we made the decision to let him lead us.
Thankfully, he is a determined little boy and seems to be driven by his peers achievements, so, although we don’t push him, he does want to take steps and walk. He wants his freedom, to be able to explore his environment and to have a say in where he goes. Which. is. HUGE! Currently this works in the form of me on my knees (yes, I got through a lot of jeans) holding his hips so he can take wobbly steps in whichever direction he desires or I carry him and wherever the Peter pointer finger of doom says we go, we must go.
I love that he can communicate and have opinions. I always try to reinforce him making his own decisions. For example, today I was in the kitchen and he was in the lounge. I heard him make his way into the hallway then proceed to try and get my attention. So I went to see him. He immediately lifted his arms for a cuddle. As soon as I picked him up he pointed to the kitchen so I took him in there. He wanted to see what I was doing so I took him over to the counter to see what I had been cooking. I let him help me briefly then I put him in his chair so he could play with the cupboard doors for a while. He was so happy.
You see, when we received Freddie’s prognosis and we were told what he ‘won’t’ or would be ‘unlikely’ to achieve but it was never explained to us what our child would accomplish, and that he would accomplish so much. Freddie successfully navigates his world and has his own way to communicate all his needs and wants. Nobody told us that he would find a way to get to me even though he can’t sit unaided or that the pointy finger of doom would be able to dictate where he wants to go, what he wants to watch on TV or what he wants to eat. Or that he could bang his hand on the table yelling ‘mo mo mo’ when he wanted more of something. Nobody told us that his face would light up when he heard music or that certain songs would get him really animated. Or that he would love books. Nobody told me that he would love The Gruffalo, Thomas or Go Jetters and always laugh at certain parts of the same episodes. That he could say ‘I love you’ with just his eyes or his hugs would be the best thing ever.
So many beautiful moments that I didn’t know would come because I was consumed with the grief of what wouldn’t. My Super Fred is utterly incredible and nobody told me he would be, that he had that capability to be. Instead I was just told a list of things that he wouldn’t be or be able to achieve.
