Erik Quinn: The Heart of a Family: Breaking Point

Tuesday, October 24, 2006

Breaking Point

I'm in a midnight black mood today.

I'm not a little miffed.

I'm not a little huffy.

My hide is not just slightly chapped.

I'm furious.

Today I feel alone. I feel like the only person in Erik's life facing this disorder head on. This may or may not be true, but it is how I feel. Why? I am the one ordering the videos (and forcing people to watch them), sitting in depressing parent groups every week, dealing with therapists, going to appointments, taking care of 95% of his special needs, having my interaction with him scrutinized, and spilling my guts about this on line for everyone to see. Everyone else gets happy-fun time with my son and seems surprised when I explain how hard this is on me. All day long I am the one worried about which shoes will fit over his orthotics (and standing in stores making him cry as I force them on), calling in medicine, trying to find pants without giant holes in them from him crawling to chase spinning or rolling things, keeping him from plunging his hands into the wheel wells of cars slowly rolling by, and wondering how strangers will react to him climbing on them when let go of him to open my purse. Strangers now have their hands all over my child when we are out. When I try to forget about Williams, my phone rings with someone wanting to confirm an appointment or a therapy session. I don't have the luxury of forgetting. Believe me, I have tried. I am the one doing research and printing out lists of tests for the physicians who have never heard of what my child has. I am the one telling the therapists that his brain doesn't work the same way as the other children in his class when they don't understand why he can't do a simple task. I am the one who has to fall to pieces every day and pick myself up. ME. Sometimes this all comes crashing down on me. It is not possible to be Ms. Merry Sunshine 24-7 and thank God for "the disorder to have if you have to have one." I am NOT thankful for Williams syndrome.

Over the last couple of weeks I have seen Williams manifest itself in my child in a colossal way. There was no transition period. There was no time to prepare for this transformation. He went instantly from a slumped over, drooling infant to a gregarious, stranger danger-free little man, and people are so busy jumping up and down for joy that they can't see the fear in my eyes, what a challenge this has been (it gets harder every day), or how dangerous it all is. When I try to explain how scared I am, they don't seem to hear me or perhaps silently think I'm a terrible mother for wanting my son safe again in my arms when he has no interest in being in my arms anymore and struggles free of me to explore the world without fear. I have been told several times that I should be thankful he is going to be a handful! I feel awful because I'm NOT thankful. I hope God and the world will learn to forgive me. I have been warned not to talk to the other WS mother in town with a grown child unless I want the absolute truth in extremely blunt terms. Maybe that should be the next step for me. I suspect we might have more in common than I formerly imagined. I know in my heart what she will say. I know she will tell me stories of her child being told not to run into the street but seeing her child run out in the street seconds later anyway because she said she understood but didn't truly understand the concept. Children and adults with WS often say the correct words and seem quite eloquent but have no grasp of what the words they are saying actually mean. Yes, I know my child is simply delightful. Yes, I know how lucky I am to have my child alive and healthy with this disorder. Yes, I thank God for this kid with every fiber of my being. Yes, I love my child more than life itself. He is wonderful!

Excuse me for being scared shitless.

I need time to get to know my son yet again, and I was relieved to hear that Brian is able to see where my fear is coming from and what might lie ahead for us. I looked at Erik this week and saw glimpses of a kid I don't know anymore. That is not a good feeling. Please be patient and let me transition into this period, even though it isn't a pretty process. If you don't understand where I am, that's okay. How could you? I don't want you to point the bright side of things out to me at this point because I am currently crashing head on into a brick wall spray painted with "worst case scenario" on it and am fully aware of where the bright side is. It's the only way I can move on with things. That's how I am wired, and that is how I have made it this far. That is how I am going to learn to keep my son safe and happy.

Please be patient. I'll make it.

I promise.


Anonymous Anonymous said...

I can not even begin to understand what you are going through. I can only say that I am here for you, always. Our 18 year "anniversary" is just around the corner and I look forward to this weekend with our children, our spouses, and maybe a moment of relaxation. You are one of the very best friends I have ever had and I am thankful for Halloween 1988.

I love you, Shaena

9:54 AM  
Blogger Lisa R said...

I have had a rough one too this entire CHOP thing is Killing me I even broke down on the phone today while talking ot a nurse about referrals...oh to I hate those things and Krssy the referal natzie that works in the ped office. I know your exact feeling it sucks and they come in waves... I bet the real waves this weekend well do you some good.

Love you have a good weekend :)

4:33 PM  
Blogger Nancy said...

Shaena -- You are the best. I can't wait for this weekend, either. I hope we can relax a little.

Lisa (& all the girls) -- I would shrivel up and die without you all. This is so incredibly hard sometimes. It does come in waves, but I didn't see this one coming, and I feel like I'm drowning. Hope your appointment goes well, Lisa.

5:02 PM  
Blogger Nicole said...

Nancy, I wish that I could say something that would make all the pain go away. My heart goes out to you as I have very acutely felt those "drowning" moments (actually for months). Please know that I am there for you and am praying for some better days ahead for you. Love, Nicole

6:26 AM  
Blogger Aspen said...

My dearest Nancy, as I sit at my computer reading these words...tears fill up my eyes and my gut starts to feel like it has taken a punch from Mike Tyson. Your words and fears and anger I feel everyday. All of the girls have these days. We aren't drowning, and we will go on to tomorrow, and we will try our hardest to put on our latest "happy face." But the pain inside never seems to fade. I am so thankful that we have a place to go and write out these feelings. In the blogging judgment is allowed, only understanding and comfort. I love that boy more than you will know. And you are not the only one dealing with these things, you have about 8 wonderful moms around you facing it right along with you.

I LOVE YOU with all my being!

7:31 AM  
Blogger Lizard Eater said...

I wish we lived in the same town! You need a Girls Night Out. Good food, good conversation, diet-free Cokes (or something harder, if that's your preference.)

Hang on ...

7:44 AM  
Blogger Kerry said...

No 'brighter side' analogies, no 'you're lucky' speeches .... we're all here for you to vent, understand and refill your glass if need be.

You are NOT alone.

Love you - K

3:45 PM  
Blogger Kim, Grandma to Ava,ws said...

I am frozen at my computer right now. I will comment you later, but right now I am physically feeling your pain. Hugs to you.

5:39 AM  

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