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Monday, 26 August 2013

Sitting on the edge.....

With Cadel being so well at the moment and avoiding admissions. We as a family have been busy during the weekends just doing everyday things and some extraordinary things. 

Because of Cadel's health we haven't been able to visit my parents who live in a small coastal town 4 hours away for over 18 months. Although we have seen my parents as they have visited us, it's always nice to go back to your home town, even if it is to remind your self why you left in the first place. ( Bit cheeky I know!) 

Not being able to visit for so long has meant that I haven't seen my grandfather in many months also. With the use of some technology it has been great to see him on Skype but there is nothing like giving him a hug! 

I am happy to report that just this past weekend we made the trip down, with the clearance of Cadel's CF team. We had to pack a few extra items then the normal road trip but we made it down and really enjoyed ourselves.  It was great catching up with my grandfather and going back to my hometown. 

CF and Cadel's condition are never far from our mind even when we are enjoying ourselves on trips like this or just hanging out at home. Every step of the way, every where we go CF is always lurking in the shadows, waiting to give you that jolt back to the fact that we have a child with a limited life. 

I refer to it as sitting on the edge of a cliff, waiting and worrying that someone is going to knock you off. Staring down at the black hole that is the unknown. Its like a terrible waiting game. Yes Cadel has been well lately and has avoided an admission for 13 weeks now,  but the fact that the Dr's told us in January that he may only have months left is stuck on loop in my head. Those words have never left me and as each month passes, hubby and I high five but we never stop worrying about the next month.  So even when he is well we are concerned about what's around the corner.  We remain positive and hopeful that Cadel will be a statistic of a good type. We want him to have the story to tell at his wedding that at age two he was told he had months left to live and that he proved the Drs wrong. Oh and don't worry this Mum will invite those Drs to the party, not to gloat but to thank them for all their efforts and for never giving up. 

As a Mum of a child with a terminal illness I don't think that I will ever stop sitting on the edge of the cliff but I know that I can look around and see the family and friends who are waiting to grab me. My support group, my safety net, my harness, they make it possible for me to just function daily but I know that they also genuinely care about Cadel's health too, sometimes they even sit down beside me on the cliff.