Sometimes I see a lot of it and sometimes very little but it is always with me.
I heard this phrase last week and it stuck with me.
I was out to dinner with some friends last night. We have been talking about sharing our stories and the best way to portray our lives.
One of the most important things we realized is that our life is not all about grief in dealing with a severely disabled or medically fragile child. It is not a moment that we need to "get through". It is not a challenge/adversity that we come out the other side of and feel free or without struggles.
Many of us have received books on grief, praying through the tough times, getting through the storm...all of which have their time and place. It is certainly something that is part of the process but it is not something that goes away or even runs our life. It is hard to have your child struggle with basic things like eating or motor skills. But when you child snuggles in to you, it is a moment that you would not trade for anything.
We have a very strong ebb and flow in our life. Sometimes it is heavy with grief and struggles; other times with tremendous joy. Sometimes things are really rough and other times things are calm. We miss the things that we do not have but we love the things that we do.
The sorrow and hurt can creep up when you least expect it. Sometimes I find myself consciously pushing away those thoughts. Then, at times the struggle is in the obvious, when unwanted test results come back or having your child go through yet another medical procedure. It is hard to see you child put through so much and there is not much you can do as a parent to stop it.
We appreciate the little things in a entirely new way and savor it all. This life has changed so many of us...made us better people...love a little more deeper...more reliant on our faith. Having those struggles does not mean our faith is lacking it is just part of our life moving forward.
Having a child with severe disabilities, a disease or medical problems has its struggles...for me, it is like my shadow, some days I see a lot of it and sometimes very little but it is always with me.