They are tied together, these emotions, at least for me and though guilt is widely acknowledged as a feeling to shake off, it is quite difficult to do when tied to heavy truth. Truth for me is my lovely son Amos and all that travels with his person, inclusive of a rapturous smile and quite severe special needs. More severe than I knew truthfully until I received the report from his play based assessment. He is turning three in the next week and the truth of his evaluation resonated with me.
I was ready or at least I thought I was. I am a trained early interventionist and have done assessments myself, though many moons ago. I knew to request a play based assessment and I even brought my own speech therapist. I had learned from friends to request the report prior to the meeting so I wouldn't be a virtual train wreck. Thank goodness as those numbers dictated innocently marking my son's age in months would make most anyone wretch. That is the truth that carries the weight of guilt.
If I am to love my son, as I do quite more than I could ever articulate, then why does admitting the way I feel attach so easily to tracks of guilt. To hate cancer is easy. No one disagrees. It is malevolent, malicious, malignant- all bad prefixes and nothing to explain away. To abhor the delayed development of my little boy is not nearly so easy as it is wrapped up in the son I adore. To say that my sorrow is intense or that sometimes I feel electrocuted with grave disappointment leaves me feeling that I don't love him enough. Does that make sense?
I want to have my cake and eat it too, quite simply and I must, if I am to survive the path that life has led our family down. In this moment, as well as the ones before and those that come after, I like to think that I shall offer the whole truth. This truth is different from the bits I select to pull at particular emotions, in myself and others. The whole truth is intrinsically complicated and perplexing and daunting even to my self, a mother four times over, an educator who devoted ten years to the study of early childhood, particularly to children with special needs and research related to best practice and using that research to best influence policy. This is my deal and yet, I am drowning.
To say that I don't feel like I'm grasping to wet dirt from a cavernous place would be untruthful. I do feel like that. When I read that my son performs like a four month old or a seven month old or a ten month old, my mouth waters with foreboding nausea. I hope I'm not scaring anyone. Quite truthfully, I scare myself and this having a special needs child has been really scary. The abyss of the unknown looms over our family and we, to some degree, remain frozen, despite our very best efforts. To concede defeat is unconscionable though and to love Amos means to embrace the feelings that I shirked away for so many years, feelings of grief and sadness and love and utter adoration of a brother who left this earth far too soon. I know that life is linked by paperclips now and even if you hide or submerge, eventually those feelings float to the surface. How thankful I am as to float as it means I shall not drown after all.