Life is Precious (A message by mom)

Each day I wake up and am thankful for many things. Having a sick child has taught me to appreciate life on a much greater level. Not knowing what the future holds is something I have learned not to take for granted. Before Parker, I thought that I had the "picture" perfect life. I had just married the man of my dreams on a beautiful island surrounded by people who love us. I had just moved into our house which very shortly after I learned would soon be a home to not only us but our precious little boy. I had a great job doing what I love most- teaching and I had a very supportive network of family and friends who I loved and I know loved me. I say this because like many others I never thought that in the blink of an eye my whole life could change and turn completely upside down. I will never forget the day that I found out about Parker's disease and the possible outcomes- it was the most devastating day of my life. All that I wanted to do was to take it all away. I would have given anything to put myself in his position and to let him lead a normal, healthy life. I think that must be the hardest part of being a parent- the helplessness we feel when there is nothing we can do to change an outcome for our child(s) or to take away their pain. In a heartbeat, I would have given everything up for Parker because all of a sudden my life was no longer "picture" perfect. All of the things I loved about my life suddenly looked different. Material things were no longer important and my house definitely did not feel like the home it was supposed to. Although, Parker had only spent a very short time in our house- the emptiness and loneliness were like no other.

The reason I am writing this article today is because yesterday we learned some devastating news about the death of a family member on my husband's side. It was this news that once again became a shocking awakening about how quickly one's life can change. No one has a guaranteed ticket to good health and fortune. Being around so many sick children for so many months has reinforced that. It is so tragic to wake up one day and within hours have your life change forever. Although I have a sick child whose future is uncertain, I always tell people that there is always someone who has it "worse". It is this death that reinforces that belief. I still have my precious baby to hold. Is our life ideal right now? Of course not. I look forward to the day when my son will be able to play with his cousins and friends, when my husband and I can return to work. However, ideal or not- these are the cards we have been dealt. I still have the luxury of having my sweet baby at home with me, unlike so many other people who experience a loss that is permanent.

I woke up this morning feeling the need to write. I have often found writing to be extremely therapeutic which is why I told my husband that I wanted to write today's message. Life is precious and it is because of this that I, too, must remember to always put things into perspective. There are things in life that we can change and then of course there are those things which we can't. I have learned not to question too many things about fate. I truly believe that things happen for a reason even if we cannot explain it at the time. We often think that perhaps Parker was diagnosed with this horrific disease so that he may be an integral part of finding a cure for it.

Our hearts and prayers go out to everyone who has experienced a loss and in particular to those in our family who are grieving at this time. We must find some strength in believing that for whatever reason John is now in a "better" place. We know that Parker has a very special angel watching over him.