Along with all that means inevitably sharing their saddness and their pain when MND eventually takes it's toll and yet another MND warrior becomes an MND angel. There have been so many lives lost to this damn disease in the past few months, some of whom I have gotten to know a little via them or their loved ones. People I am glad to have known, even though it would never have been so, were it not for this common evil, MND, touching us all.
We get to share the happier times, special memories made, amazing fund raising challenges completed, endless, amazing campaigning done, but we also get to share the problems facing those living with MND, especially regarding care and access to the right equipment. To hear the frustrations caused by the lack of education in the caring profession, especially regarding how to care for someone in the later stages of the disease. To see the toll this leaves on their loved ones, especially when younger children are involved. MND is particularly cruel, but never more so than when it strikes those with very young children.
Sometimes I want to run away from all the pain and saddness as it is just a reminder of the inevitability of Chris's future and the fear I have for him and us living without him one day.
It is a double edged sword because in order to share the love, support and good times of any family, we also have to share the sad times and the bad times and give some of that love and support back. We have to give as well as to recieve.
So I will take the love and support of my MND family, share the good times and the bad and do my best to be there when the sad days come for others. I will try to pass on that love and support along with any knowledge I may have gained along the way, to help those newly struck by this disease, no matter how painful it may be for me.
That is what family is all about, especially this wonderful MND family.
For all the MND Angels and MND Warrirors.
