Erik Quinn: The Heart of a Family: Awakenings

Monday, January 15, 2007


I would classify my week without writing a success. If I had to rate how it went, I'd give it a 6 out of 10. I'll do it again.

Honestly, I thought I was going to keel over and die at first. Tuesday I found myself in a dark state all day, tears spilling while I tried to focus on my work. Why? My experiment wasn't working. I wanted instant results. My brain just wouldn't shut off, no matter what I did. In fact, I just seemed to think more without writing as a pressure valve. At the risk of sounding schizophrenic, the brick in my brain I acknowledged in my very first post is still present, although I am used to carrying the weight of it now. However, it remains quite palpable and uncomfortable. This is when I think another child would come in handy. I wouldn't have the time to obsess so much about Erik's syndrome. God, I wish I wanted another child. It truly bothers me that I don't. I tried to want one. I pictured my life with another child and even smiled upon imagining it, but I when I looked at the mother holding the baby in my own daydream, she wasn't me -- and I didn't want it to be. What's wrong with me? I came to the conclusion that with work and Erik, overloading myself with yet more responsibility might be a poor strategy. In fact, it might be what finally sends me on a one-way trip to the nut house. I'm following my instincts on this one, which are less than subtle when it comes to this topic. If I must go away to stay anywhere for a while, I don't want it to be where I eat quivering blobs of gelatin with plastic utensils or watch television in anything called a "day room." Please. Unless you can promise me enough tranquilizers to give me a couple hours of REM sleep. Oh, yes. I'll do anything for that.

I tried to watch movies. I turned on the television and came across Awakenings with Robin Williams and Robert De Niro. I watched about 10 minutes of the scene in which all of the people come out of their frozen, catatonic states. It has been years since I saw that particular movie, and I really wanted to sit down and enjoy it, but I was afraid my tears would never cease if they began to flow again. I read my book on Williams syndrome instead.

One of my best friends called me Tuesday or Wednesday, and after he got over the shock of reaching a snot-packed girl in the middle of an extremely ugly bout of sobbing, he told me I need to focus on only what I can control. The trouble is, I think I am. I am consumed by it all. It's overwhelming to think about therapy and doctors and wonder if I'm doing everything correctly. There are no real guidelines to follow in terms of what Erik needs in terms of therapy, and the doctors here are of little value to me, which means I become the one doing the research and asking for tests. His therapist told me Thursday that once he gets into the school system, they will be there for me, but she warned me that I am the one who will need to fight for him. There is no doubt in my mind I can do this, but it seems like a recipe for becoming more obsessed. I wonder if I will ever fully recover from the horror of all of this. I have scheduled an appointment for Thursday with a private physical therapist who uses hippotherapy to help children with disabilities. I also scheduled appointments for his eyes and his teeth in the coming months.

I was in bed cuddling with my ill-tempered, slightly stinky, geriatric cat the other morning thinking of the days when the two of us lived alone in my little blue shack. My worries then seem laughable compared to the ones I have now, although I know they seemed monumentous to me at the time. I was lonely during those years, and I can remember how that felt. Still, I take a look back at that girl mowing the lawn in the summer heat and wonder who she is. She looks like a stranger to me now.

Tuesday afternoon I discovered a card from Massachusetts in the mailbox. On it was the name McGarrah in looping, red felt tip ink. Inside was a card from Anne McGarrah's mother, thanking me for the letter I wrote after her daughter died from complications of Williams syndrome. She enclosed a copy of what was read at her grave. Before she died, Anne apparently told her family she would be waving to them at the funeral as they said their goodbyes. It was very personal, unexpected, and touching. Also included was a newspaper article documenting Anne's interactions with world-famous neurologist and author Oliver Sacks, whom Anne apparently loved.

And there it was.

The article explained Dr. Sacks was the subject of a movie called Awakenings, the movie I had previously been drawn to but turned off. I had no idea Dr. Sacks was the main character in the movie. I paused and fought the urge to look over my shoulder. I suddenly felt Anne was waving to me.

Thursday Erik parroted my words over and over. Communication with him is sometimes difficult. There are days when he demonstrates he understands parts of what I am saying and then days when I wonder if there are any lights on at all. After listening to him repeat each of the last words of my sentences all morning, I was ready to put my head in the oven. Dominick and Kathy came to visit us in the morning, which was wonderful (she brought piping hot coffee and pumpkin scones), but it's always difficult when I see how far behind Erik is in terms of...well, everything.

By yesterday, I was doing better. I made Erik spaghetti sauce with beef and mushrooms. Before we sat down to eat, he went to the window and began sobbing, rocking back and forth on his orthotic-encased legs and saying, "GO WAY!" He insisted something was outside, but I saw nothing, even upon turning the porch lights on. I'm not entirely sure what that was about, but it gave me a serious case of the heebie-jeebies. Sleep had eluded him all day, and he was exhausted.

It has been a roller coaster ride of a week, but I made it. What helped was a message written in looping, red ink on the day I needed it most.



Blogger Lisa R said...

I am glad you are back I missed you last week...It is so ok to not want more kids...I actually say the same thing sometimes and I already have two...I know I do not mean it I love my too but god it is hard sometime. I would be more then willing to ship Emma off your direction next time you are having questions :)

If writing helps you to have better weeks maybe you should not deprive yopurself of it...I mean really how often do we actually get to do things for us...LOVE YOU TONS :)


7:23 AM  
Blogger Kerry said...

Writing is your release, and without it you don't have one. Who cares if it is dark or sad -- you need to get it out so you can be present in your life. You don't have to share what you are writing, you don't even have to keep it -- write it down then delete or throw it away. Sometimes even putting hand to pen is better than the keyboard - you are more involved in some sense.

I often think back to some time when Michael was little and my worries about some ridiculous things... it all seems so silly now. I know that one day I will look back to today and think the same things. Try to remember that - Erik is doing great. Whenever I need a little pick-me-up I listen to Erik's adorable voice and hope that Brady is where Erik is when Brady's 2.

I know it's so hard to keep your head above the water some days. Just know we are out there understanding where you are coming from... it's not a life we signed up for but one we are in.

Have you thought about getting a puppy?? :)

Love you, Kerry

P.S. I would come and read to you in that day room... just let me know what's on your book list. :)

8:39 AM  
Blogger ~Deb said...

I think this entire blog is such a great outlet for you and a way of sharing your experience with us all so we can kind of grasp what you're going through.

That movie "Awakenings" was some flick! It really shows you how much one can understand without the proper communication involved.

I wonder what it was that he saw outside the window??? That would have creeped me out.

I hope you all are doing great. Hang there!


1:12 PM  
Blogger Nicole said...

I've missed you Nancy and am glad you're back. You are so real and your emotions are so raw. You definitely use writing as your emotional outlet. I hope that your writing allows you some release from those emotions.

Hope you are doing well. Love, Nicole

5:50 PM  
Blogger Aspen said...

I have missed you dearly! I too had a hard week and felt like Daven and his limitations were haunting me like a horror movie. I couldn't seem to get away from them. Today, however, after a nice long weekend of staying indoors and snuggling with him by the fire...I feel refreshed and ready for a new week.

Like you, writing is a way to get my feelings out. I spent a lot of money on therapy...and it hasn't done half of what blogging has done for me.

Anyways...I am glad you are back!

9:29 AM  
Blogger Eric said...

That is a beautiful story about Anne McGarragh. I am glad I visited your blog today and read it. Oliver Sachs, actually attended a Williams Syndrome Conference in 1996, but unfortunately, he put almost everyone to sleep and he didn't stick around very long. He also did a PBS series, and one of the epidsodes was with a WS child. It was quite good. You may be able to find it through the Williams Syndrome Association. The last name of the child he followed around was Comfort. Sorry, I can't recall her first name (old age!) but her Mothers name, who I met at the same conference incidentally was named Carol Comfort.

9:32 AM  

Post a Comment

<< Home