No parent should outlive their children but for so many it is a reality. It's a reality, that I think, it is easy to be oblivious to if you've never faced it. I've faced miscarriages before but even that didn't prepare me for the world as I know it now. These things are the things that often people think 'it won't happen to me' because it isn't talked about. The taboo of baby loss is slowly being broken thanks to charities such as Tommy's and Count The Kicks etc and I think that this should be the same for all child loss for whatever reasons.
I follow lots of families in similar situations to us, some with children with Cancer(s), some with chronic illnesses, some with babies that haven't survived after birth and some with disabled life limited children that are currently 'making memories' whilst their precious children are receiving end of life care. It breaks my heart and even though Dylan is doing well now in comparison to last year, I find myself worrying about his life expectancy with the damage all this has caused to his body.
This is why we try to focus on making memories with our boys and enjoying as much time together as possible. We purchased Merlin annual passes in the sale this January to enable us to take the boys to the theme parks that they love as much as they wish without the worry of money (besides petrol of course).. It is a small way to make up for the fact we cannot take them on holiday abroad properly due to Dylan not being allowed on a plane. Mike had the first week of the Easter holidays off and we made the most of that and tried to fit in lots of activities which not only help make memories but also keep our minds busy and too full of love to dwell on the negatives. Sadly these thoughts don't stay away too long though.
Dylan's birthday is next week and I remember being too scared to even buy his gifts last year in case he didn't make it. It makes me wonder how many birthday's lie ahead of him. Will he make it into adulthood? Will his lungs be good enough to support his growing body? Will it come back again? Am I going to outlive my child? The answer to that last one is probably.
There are no real answers or statistics for Dylan as he is so rare. I only know of one case like him that are now into adulthood and doing well but that is ONE case! All it'd take would be him to decide to smoke as an adult and it would likely come straight back.. that is why people aren't allowed to smoke around Dylan because even though it didn't cause his cells to act the way they did, it could reactivate the disease.
You cannot live in the past or the future only the present. The past is painful, the future is frightening but the present is perfect right now. Every day I pray for another perfect day. And I pray other families I know get another day of making memories..
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