Just My Son

March 9, 2011

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While at the library a couple of weeks ago, I stumbled across the book, Mother Warriors, by Jenny McCarthy. I remembered watching an Oprah a year or so ago where Jenny had described her experience fighting and advocating for the best treatment she thought possible for her Autistic son. I remembered feeling envious of her resources; her ability to be able to fly her son across the country for cutting edge treatment. Even her ability to drive to the closest Whole Foods and stock up her pantry with the food she has sworn changed her son’s life. Even more so than the money, I was envious of her ability to remain stoic enough to tell her son’s story on national television. It was not self-serving for her, and I am sure it impacted many people who were hurting for answers for their child’s Autism.

I decided to check the book out, and it has sat on my nightstand for the past few weeks. I knew I wanted to read it; that I would relate and benefit from hearing the stories of amazing mothers who have gone to battle for their children, but I was putting it off. I knew I would leave the stories feeling inept at what I have done for my son. At 1:00 in the morning a few nights ago, I picked it up and began. I only made it a few pages in before my heart began pounding.

In the first few pages, Jenny describes an experience where her son was having a seizure and his heart stopped for over twenty minutes. Although, Deakon’s experience was different, the emotions she described hit me like truck. Jenny then describes how the next year or so, she just survived; she put on her brave face, smiled, and dealt with it. She didn’t have a choice. I again, felt connected with her emotional experience…

The next part is what has lingered with me though…the part where she describes panic attacks she began having at night. The attacks had seemingly come out of nowhere, and they began really freaking her out. After a therapy session and some reflection, she realized that she had truly never given herself the opportunity to feel what had happened with her son, and she realized she carried a tremendous amount of guilt.

Whoa.

Lately, I have been feeling a little discouraged with the progress Deak has been making. He is moving forward, but it is slow. I guess I just expected one big milestone after another-pretty unrealistic, I know, but it is what I have needed to feel like he is okay. Actually, who am I kidding…it is what I have needed to feel like I am doing an okay job with him. I have been putting so much pressure on myself to move him. So much so, that I was in tears with Blair the other night because I hadn’t “worked” with Deak at walking that day. So much so, that in the middle of the night I worry and beat myself up for all the time Deakon had spent watching his favorite shows. Sure, that is what keeps him happy…but, I have guilt because I know that those are also what keep me sane.

I think all mothers experience some degree of guilt, I definitely did before I had Deak…but, the pressure of trying to single-handily ensure that your child, who is not able to develop completely unaided from others, “measures” up to the expectations around him, is just A LOT to carry. Every therapy visit is an emotional roller coaster, loaded with questions of good intent about what Deak is “doing now.” Sometimes I spend the entire drive there trying to figure out the new things he is doing so I have something to answer. Most of the time, only to be rewarded with a stinker of a son who wants Nothing to do with showing the therapists his new skills. I think the speech therapist is sure I am lying about his verbal usage in the home, because he has yet to even say “MaMa” for her. The spotlight on Deakon’s development inevitably falls on me, and I have to answer to it each week.

I try to compare that at times with Abby. I don’t think my mental health would have made it past her second birthday with that kind of dissection of her development. She was my first, and naturally perfect:) Therapists and Doctors are too clinical at times. I put my suit of survival on while in front of them and listen to them call my son “developmentally delayed” and unable to “generalize.” All the while trying to hold it together just long enough until I drive home and can try to stitch up the tears on my breaking heart.

Sometimes it is just forgotten that my special needs son, is just my son to me.
My son. Period.
And, I will love him with all my being even if he is still rolling around on the floor when he is eighteen.
Not saying I won’t keep working hard…very hard. But, I know I’ve got to figure out a way to lose some of this guilt.
And…I have got to figure out a way to get that damn “Babies can Read” commercial off the air. Seriously…I thought my expectations were harsh.

Read more from Jenny, and the comments from this amazing post (including one from her Dad!) by clicking here.


2 Comments

  • Hey, I just read your post and am a Facebook friend of jocelyn. I wanted to let you know that your doing an a amazing job! It is tough being a parent of a child with disabilities. I know. I have a little girl with her own form of trials. It sucks going to the therapists and feeling like they are just going through the motions and not thinking outside of the box to help your kid while making you feel like you don’t do enough or anything. I have felt your frustrations and pain numerous times. The ting I keep telling myself is that you are the mom. You are doing a great job and you love your kid. That is the best any of us can do! If y ever need to email me I would love to be any help! Good luck with your journey. It does get better as you adjust. I promise!

  • Hello! Just want to say thank you for this interesting article! =) Peace, Joy.

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