When you've faced the fear of loosing your child it really does throw a whole new light on everything. I am so lucky I get to watch my children grow into adults and that is amazing and something not to take for granted. Yes it is wonderful when they are little and you should cherish every second of it. But don't feel too sad when they go up a clothes size, start a new year at school, have another birthday.. because growing up is something not everybody has the chance to experience.
I thought that Dylan would be 'forever two' when we nearly lost him just weeks before his third birthday. Now instead of wishing he would stay little like I use to, I am just so excited to watch him grow and get stronger! I cant wait to hopefully watch him go through all the stages of school, find love, find a career, get married, maybe have children of his own etc. because he was nearly robbed of all those things.
Childhood diseases such as Cancer claim so many lives a year, and it's easy to live oblivious to this if you've never seen it happen close to you. So many children won't have had a 'first day at school' this last week. So many won't next year either. Lots never get to ring that 'end of treatment' bell. Some wont reach adulthood. Many more may not get married or have their own children. These things are not a 'right' in life and are not guaranteed, they are a privilege in my eyes. Such milestones should be celebrated with joy not sadness.
We had an appointment this last week for Dylan at Great Ormond Street hospital that has been weighing on my mind since he finished treatment. Despite the disease being 'non active' I have always worried about the damage left behind and what it meant for his future. I have a huge fear of outliving my children and I was so frightened that once treatment had finished we would be told Dylan still needed a lung transplant because of the extensive damage. My fears however were quashed by Dr. Helen Spencer who quite simply said "I'm not going to transplant him he's far too healthy"! Yes the scans don't look spectacular but Dylan has proved at his appointment that he can manage with what he has, and very well indeed!! They are so pleased with him that they don't even want to see him next year unless there are any issues. If he continues to improve and the disease doesn't reoccur there is a strong chance he will be discharged from GOSH in two years and won't need a transplant. I walked out of that appointment feeling like the weight of the world had been lifted off my shoulders! Now just to pray the LCH doesn't ever come back of course.
My beautiful boys.. you are growing up SO fast and I cannot wait to watch you grow into the wonderful young men I know you will all be someday. You make me feel like the luckiest mum in the whole wide world, and I can't wait for you to show me what you will achieve each step in your journey through life. <3
