What We Need

     I’ll never accept this. I’ll always accept my child for who and what he is, but as long as there is hope, I will never, ever quit for him. We are continually looking for new ways to help C break through the barriers in his brain and body, and I doubt I’ll ever give up the search. With each new step, be it therapeutic or medical in nature, we find something or someone that helps, and it often comes in forms we don’t expect.

          There are some moments when I feel like I’m beating my head against a wall, but they always pass. When I’m at my lowest, C does something that amazes me in its power to bring back the faith. So no, I’ll never accept this for him. It makes him who he is and I completely accept him for who he is but I will continue in my quest to find ways to make his journey through this world happier, healthier, and safer. So I suppose I’ve failed the acceptance portion of the stages of grief, but that’s okay by me.

     Back to the stages of grief….    

     Last year was terrible as we lived far away from family, we were all sick constantly, C had a horrible school situation, and we couldn’t find therapists. I was stressed to my limit, and finally broke down and saw a psychotherapist myself. When I told her I thought I was depressed, she laughed and said “Of course you are depressed - I’d be worried about you if you weren’t!” What a relief to come across someone who thought this was absolutely normal given the situation. I had never thought about it in that way, and wondered if perhaps I was overreacting. Having someone objective acknowledge the stress of what we’ve been through gave me the strength to start moving beyond it.

     I still struggle with bad days, and have come to realize that my bad days often coincide with C’s bad days. I try very hard not to make HIS bad days coincide with MY bad days. I know people think kids with autism don’t notice other’s feelings, but I don’t find that to always be the case. With C, it’s not that he doesn’t recognize how others are feeling sometimes, but rather he internalizes how others are feeling to such an extent that doesn’t really know how to cope. He is very reactive, and sometimes I think he has the weight of the world on his shoulders.

     I’ve heard people talk about the five stages of grief in terms of dealing with a serious diagnosis for a child. You grieve for what they might have been, the loss of normalcy, the things you thought you could take for granted. I, for one, feel like I have gone through the stages of grief in varying degrees multiple times with each new issue that arises. I change from stage to stage in any given year, month, day, and even minute. From day C was born (and subsequently nearly died), we’ve been dealing with one thing after another. That’s not to say there haven’t been good days; happily, there have been many, many of those. But as each new issue started, I kept thinking “This will be it. This will be the last thing to happen.” I no longer say that to myself.

     Here’s the list: respiratory distress syndrome, pneumothorax, pulmonary interstitial emphysema, pulmonary hypertension, hypotension, sepsis, apnea, bradycardia, oligihydramnios, prematurity, tracheomylacia, global developmental delays, oral motor dysfunction, failure to thrive, hypotonia, sensory integration dysfunction, reflux, reactive airway disease, asthma, left-side weakness, ankle pronation, atypical tongue grooving, toxic synovitis, ataxia, verbal apraxia, oral apraxia, plagiocephaly, food allergies, unspecified autoimmune disease, impaired methylation abilities, yeast problems, absent glutathione production, high functioning autism, developmental coordination disorder, hyperlexia.

      WHEW!