The next nine years have been even much harder in places. Years filled with hospital appointments, sleepless nights and bouts of deep depression for us both. However, all the pain we felt, all the stress we have had (and still to come), and all the deamons we have fought off have all been worth it.
I can’t imagine my life without a struggle in it. People often ask me how we cope with having a child with a complex disability – and I always answer precisely the same – we know no different. Despite us having another child who is ‘normal’ (although that’s a stretch some times), we have never known a life not filled with the tasks we now consider normal. Our life is dictated by our calendar, our meetings and fights for funding, but it’s filled with the most amount of love I have ever felt.
When I opened the door this morning with a little girl in toe she had no idea it was her birthday, yet she jumped up and down and shook with such excitement when she saw her presents and balloons it made it all worthwhile (even though it took me 2 hours to built a tent for her!). My life stresses me out, it makes me sad at points, and it exhausts me mentally and physically – but I love it. I love battling for my daughter to live as normal life as possible, and although I would give anything for her to be able to do more things, I wouldn’t change her for the world.
Thank you Lucie for teaching me more in your nine years with us than all the others combined. Thank you for making me a better person and giving me the best cuddles in the world.
I love you sweetie x.