"Tears on the sleeve of a man
don't want to be a boy today
heard the eternal footman
bought himself a bike to race
and Greg he writes letters and burns his CDs
they say you were something in those formative years
hold onto nothing as fast as you can
well still pretty good year
Maybe a bright sandy beach
is gonna bring you back
maybe not so now you're off
you're gonna see America
well let me tell you something about America
pretty good year
some things are melting now
well what's it gonna take till my baby's alright"
~Tori Amos; Pretty Good Year
February 21, 2011 will forever be a day ingrained into my motherly being. When I look back at that day, it was such an ambivalent day: I was just so happy to know what was “wrong.” Yet, I was faced with the fear of knowing what the future had in store for my sweet baby boy. The process had not even evolved and I was exhausted already. Tired from being forced to fight doctors, insurance companies, the counties early intervention program, as well as facing the fact that parenting, for me at least would involve being my child’s only advocate.
It was like a double edged sword trying to force his doctors to get my child the help he needed, as a mother I knew something was wrong. Yet, there still was a piece of me that did not want to know. Denial was such bliss. I guess the pressure of worrying about his speech was more than I could bare. So I fought, fought for the help he needed. He was two years old and could not even say ten words. D-Day (Diagnosis Day): The day the speech pathologist sat me down and said in the most tactful way possible, “I believe your son has a neurological disorder that is very controversial. It is called Childhood Apraxia of Speech.” Controversial. Ha! How naive I was then. Obviously, I think back to this day quite often. As I sat in the small toddler chair as she broached the subject as smooth as possible, in hopes that I would not have a severe meltdown. The room started spinning and all I wanted to do was run. I imagined myself running down the highway, in the deep dark woods, anywhere in that little chair. Then I dreamed of the day the doctors first put my sweet child in my arms. I thought about the first moment I spoke to him when the nurse put him in my arms, “I am your mommy; I will be the best mommy forever. I promise.” As I kissed his darling, unblemished cheek I went into warrior mommy mode from that moment on. The moment I held my child in my arms for the first time, I changed from a girl to a woman.
Before D-day, I thought it would be a short term process. Carson would just go to speech therapy and they would magically cure him. I thought his speech disorder was curable within months. Foolishly, denial was bliss until the truth surfaced. I did what any parent would do, I went home and googled CAS. The conclusion: My child might never be able to talk and we had a long, hard road ahead of us.
After D-day, I have gone through every emotion a woman goes through when faced with the disability of a child: mourning the loss of having the perfect child. Please do not get me wrong: I love my son with every little single fiber of being inside, but watching him struggle is the most heartbreaking experience. I have rollercoastered through the typical model of grief : denial, fear, guilt, anger, and the one I still can’t seem to come to grips with; acceptance.
Denial: Oh god all I can say is that it has taken me almost a year to come to terms with the diagnosis
Anger, oh God! I am so angry sometimes. I keep asking myself why my child? As I watch the struggle as he tries to speak. He tries so hard and nothing comes out in the correct way. My anger gives way to a fear that is unspeakable. I just wonder if he will ever be okay. I wonder if I will ever be okay? Nights of crying myself to sleep. I find myself wondering what he really has to say and what kind of person this will make him grow up to be. Will he be introverted and keep his thoughts and feelings to himself because that’s how he started? Will he ever be ‘normal’?
Guilt is such a tough one: I blame myself, I often think back to my horrible birthing experience and wonder if I am less of woman because I was unable to give birth naturally and maybe this is what caused his CAS. Why am I unable to teach him how to speak myself, like most mother’s do? I feel so inadequate at times when I cannot figure out what he is trying to communicate to me in vowel only sounds.
I am depressed, severely depressed. Even writing this down makes me so sad that this is probably the first time I have admitted to myself that I am in reference to this subject. Sometimes at night when I am up by myself crying, I pick him up and hold him in my arms and just cry while he sleeps.
And acceptance: Will I Ever accept his diagnosis? Of course I will. I will not give up hope for his future. I promised him that when I first held him in my sweet arms. Not everyday is full of sorrow. We have improvements. On my 26th birthday, he told me, “eee ovve ooo ommy.” Best. Present. Ever. However, there are days when I want to scream or still run to that highway or woods. Days when I am in a store and a child innocently asks her mother, “What is that little boy saying? Why is he talking like a baby.” The mother responds ignorantly in a whisper but still loud enough for the words to pierce my heart with a thorn, “ Don’t stare, honey, that boy is mentally handicapped and we need to treat him differently.”
