Recently I was approached and asked if I would like to put my feelings and thoughts about Mari into words here on this blog.
I guess the best place to start is at the beginning. Mari’s mother and i met over 2 yrs ago and created an instant bond because my son Brian (who is 9 now) has autism also.
So as our friendship grew we would rely on each other for support by comparing our experiences no matter what time of day or night regardless of the different time zones. You see I live here in Buffalo, NY.
July 3 started out like any other summer day. My youngest son Nicky and I went outside to play and swim, Brian was in summer school and my husband was at work. Later in the day, my husband Brian came out of the house and said that I had a phone call. I was in the pool with the kids and i told him to tell the caller that I would call them back later. Now as we all know life sometimes can get pretty hectic and ours did here and I forgot to return the phone call. Little did I know that it was as serious as it was , had I realized that it was a seriuos situation I would have returned the phone call right away – I thought Mari’s mom was just calling to chat.
Two days went by and Mari’s mom called again and this time i picked up the phone. I was then told that Mari was in the hospital because she had gotten sick at school 2 days before and the doctors were trying to figure out what was wrong with her and what treatment would be most effective.
I told Mari’s mom to keep me posted and call anytime she needed to talk. We were kept in the loop as promised and there was even one day where I was making dinner and I got a call from Illinois and the out of breath running voice on the other end said that Mari was now experiencing seizures. WHAT !! OMG I thought … what and why is this happening…. she is only 8yrs old. I immediately called my husband and told him of this change… you know even though our families have never met we talked so often that it is like we were truly blood relatives. As the days moved on I would call the hospital in the morning to gat an update and also would read the Care Pages that had been created on Mari’s behalf. Everyday we would continue to pray for Mari’s speedy recovery but each day brought a new obsticle to overcome.
And then on an average summer day I got a call once again from the hospital. The family spokesperson told me that the family had decided to take Mari off life support later that evening and that it was only a matter of time before the worst happened. We as you can imagine I was standing there after hanging up the phone feeling deflated, I felt as though I was hit by a truck. I immediately hugged Brian and Nicky like I never had before. I did not know what was real anymore and no energy to do anything.
My husband and I went through the motions the rest of the night for the sake of the kids, but jumped every time the phone rang. Then about 11pm EST the call that we had dreaded all night came. Mari’s aunt called to say that she had passed about 1/2 hr ago.
We again just sat on the couch together in disbelief, sorrow and an overwhelming feeling of emptiness. This is NOT how life is supposed to be.
Mari, thank you – thank you for enriching my life and teaching me NOT to take anything no matter how small for granted. To take delight in the small accomplishments that the boys make.
I LOVE YOU and will never forget you. Watch over your Mommy and Daddy little angel they need you now.
Your second family in Buffalo