I have pulled away from the MPS community as of late. It has been a gradual process and not fully intentional. As Waverly and Oliver get older, I find myself becoming much more aware of their very short life spans. I began to realize that this support system of other moms who are also facing Sanfilippo, means my grieving is going to increase as I watch friends mourn the loss of their children. When the kids were first diagnosed, I searched out as many parents as I could find who *understood*. Eventually, I found a group of families with whom I shared an extra special bond. We visit one another, talk on the phone, and provide a level of support that is so desperately needed given our situations.
I remember "watching" families of older children on the message boards and conferences. Some of them seemed distant and difficult to connect with. One mom, with whom I eventually got to know better as the years went by, said that she was hesitant to get to know new families. She had watched so many children pass away whose moms were a support to her when her daughter was diagnosed. It became too painful to keep adding families, knowing she would watch their loss one day. I understood, but not fully.
One can't fully understand that perspective until you are faced with it. And here I sit. A dear friend's daughter is in the final stage, most likely her final days. The sorrow I feel is deep within. My mind is constantly wondering how the family is doing, what they are doing. And then I drift to how will I do, what will I do. I have been looking at Waverly differently today. Trying to memorize her and will her to say "mommy" one more time. I imagine her final days and then I snap myself back to the present, unable to allow myself to go there for long.
Please keep my friend's family in your thoughts and prayers. Give the children in your life an extra big hug.