I have been trying to write this post for several days now, but every time I type a sentence I immediately delete it. It isn’t because I don’t like the structure of my sentences or that the wording doesn’t make any sense. It is because I don’t like what I am writing. Once something is put into words, it becomes real. It becomes something that you can’t take back. Written words become a formal declaration. This emotional repression is a protective response that I am far too familiar with. It is called denial, which is a state of grief.
One of the biggest challenges that I have faced as a mom of a child with special needs is working through the various stages of grief. You often think of grief as having distinct “states” but I can tell you that this type of grief is anything but predictable. There is this on-going sense of loss. Just as Giovanni’s development is ever-changing, so are my feelings. I feel like I am stuck on this broken record of emotions. I keep re-experiencing various feelings of grief that I thought I had already worked through.
When Giovanni had his initial consultation with the pediatric neurologist in June, nearly two months before having the MRI that gave us his diagnoses, we were told that he likely had hypoxia-induced cerebral palsy given his traumatic birth. While we had known since birth that Giovanni’s development wasn’t where it should be, hearing the confirmation that something was indeed wrong with my son was absolutely unbearable. After having some time to process everything, it was suggested to us that we contact our county’s Early Intervention program for an evaluation. I didn’t know much about it and had no idea what to expect. Since he had the diagnosis of CP, he automatically qualified for services and immediately started with physical therapy. Going into this, I planned on him only being in the program for a short time, mostly working on strength and use of his left side. I was already looking at various early childhood education programs, and was hoping to start him in one the following year. Why not, right? So I had it all planned out. Giovanni was only going to need the help for about a year and then everything would be fine. Easy as that. Then came the MRI.
While receiving his diagnoses was difficult, nothing could have prepared me for the whirlwind of emotions that followed. I was in complete denial, and in some ways, I still am. All of these words were being thrown at me; lesion, stroke, seizures, disabilities, malformation. How the hell could this be happening? I had information being thrown at me and all I wanted to do was throw up. There was no way that this was all happening, and there was no way that the doctors could possibly know what was going to happen. My son was going to be fine and no one was going to tell me any different.
Despite the increasing concern from others about Giovanni’s development, and the addition of speech therapy, occupational therapy, and special education services, I was still convinced that all of this was completely precautionary and I continued on as if everything was going to be fine. Then everything changed. We were at the pumpkin farm on a beautiful fall afternoon, when everything came crashing down. All of a sudden Giovanni slumped over the bar of his stroller. I thought it was odd that he fell asleep so I called his name. Nothing. I put my hand on him and lightly shook him. Nothing. I immediately kneeled down and started yelling his name. Still nothing. I suddenly noticed that his eyes were open but they were fixed in a side gaze. I kept screaming his name and shaking him but he wasn’t responding. Giovanni had a seizure. But how could this have happened? Everything was supposed to be fine.
Although tomorrow marks one year since receiving his diagnoses, I still feel I am dealing with denial. While it is different, it is still the same. I still find myself having these automatic visions of “normalcy,” where our lives are going to follow the typical pattern of change. It is hard for me to swallow, and accept at times, that we do not know what the future holds for Giovanni. I just want to know that everything is going to be ok, and unfortunately, no one can tell me that.
The other struggle that I have is knowing to what degree I can feel sadness. What is the acceptable amount of pain that I can feel related to the challenges my son faces? Sometimes I feel as though I don’t have a right to feel the loss that I do, questioning if others are looking at me wondering why I am struggling with everything, as they see this as no big deal. I know part of this is my own insecurities, but I also know that it is my own uncomfortableness with my feelings. I am not usually the one looking for support or asking for help. All my life I have been the one reaching out to others, and supporting them through hard situations. Now it is me who is doing the reaching out. I am just not used to that.
At the end of the day I know that this road is going to have its share of bumps and detours. Although I still struggle with my feelings, I know that it is normal. I think we moms, especially those of us who are dealing with challenging situations, need to give ourselves more credit. Sometimes we are too quick to judge ourselves. And to answer my own question about what’s considered the acceptable amount of sadness, I know that the only person that can answer that is me.