Erik Quinn: The Heart of a Family: Acid

Saturday, May 03, 2008


Sometimes it seems as if my child is full of acid.

When Erik was an infant, long before we had heard of Williams syndrome or knew that stomach acid was constantly gurgling up his esophagus and burning him from the inside out, he always smelled like peppermint to me. He had red, splotchy burns around his mouth. He often pulled off my nipple, arched, and screamed in agony before he regurgitated everything I had labored to feed him. Everything was so difficult back then compared to the other mothers I knew, and in the dead of the night with my screaming infant, I couldn't help but wonder just what I was doing wrong.

For a week now, the skin on his bottom has broken down into wide, shallow ulcers from a bout of new intestinal problems. It looks as though he is burned once again. His symptoms are only now beginning to improve, and the nauseating scent of the greasy zinc oxide cream I smear in a thick, white layer over his skin seeps through his clothing and into the air around him. The boy simply can't seem to form a decent callus anywhere on his body. The skin itself does not seem to know how to thicken, and his toes still leave bright crimson stripes of blood all over the floor if he wears each layer of skin over them away by crawling after his toys. In fact, there is so much blood sometimes that when I moisten it with a mop, I can detect the faint scent of iron, and my stomach lurches.

This week he saw me cry for the very first time. He seemed surprised and a little frightened by my tears. This occurred after he kicked me in the chest for the fourteenth time that day as I struggled to hold him down in order to do the everyday things mothers do with tiny babies. However, he isn't a tiny baby anymore. Before I knew it, the sole of one of his large tennis shoes flew up and thumped me squarely in the breast, and the dull pain traveled all the way to the center of my heart. To an airless, dark space I no longer visit on a daily basis and have worked to seal off the majority of the time in order to dam up the river of the tears that used to come every day. We were on our fifth hour of nonstop tantrums, and I was worn down.

I am trying so very hard. I really am. Every little thing during the day is such a giant production. I constantly stand next to him and cheerfully coach him step by step how to pick up his toys, lie on the bed so I can change him, walk in 10-yard segments to the car, and even chew a sandwich. I celebrate every accomplishment, knowing that progress is snail slow but will come with time. He does very little voluntarily, regardless of the consequences, and I still must pick him up and carry him, ignoring the way he strikes out at me and trying to remain perfectly calm without losing my mind or throwing out my back. Hearing the word "no" sends him into angry orbit, no matter how softly it is spoken. He screams at me all day, even when he is not close to being upset, and continues to throw tantrums, which, admittedly, have only been intensified this week by his horrible discomfort.

This time I quietly turned away from him, closed his door, and walked around the corner into the kitchen. I sat down on the carpet, let myself slump over to rest my elbows on my legs, and began sobbing, covering my face with my trembling hands, feeling too exhausted to tread water in this ocean anymore. I finally picked up the phone and called Brian, not knowing what else to do. He came home early and confirmed my fears that things are definitely getting worse. We both know that it is important to be consistent and hold the course, and we know that time will bring us all some relief.

For now, though, sometimes it still seems as though my child is full of acid.

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Blogger Julie said...

I wish I had some words of wisdom or comfort. I can tell you that I have had bad days with temper tantrums from Amber when she was little and Grace. This said I can tell you that as Grace gets older hers are few and far between. I can only hope the same happens for you. I know how exhausting they are and how you sometimes feel like you are fighting a never ending battle. I can't tell you how much I hope God lets Erik pass through this stage fast. Hugs.

6:03 PM  
Blogger Penny said...

I am sorry for your pain Nancy. I wish I had words of comfort. I don't. I am at the very same place with Keith right now.

I will pray for peace for all of you right now.

7:46 PM  
Blogger Lizard Eater said...

Oh, mannnnn. I'm sorry. I can only guess that you feel like Sisyphus some days.

8:29 PM  
Anonymous John Andrew said...

Hang in there Nance. I know it doesn't seem like a lot, but I'm praying for you for strength.

1:35 AM  
Blogger Kerry said...

My heart aches for you, Nance. How can the child we bore and raise with unconditional love act like this? I hope this phase will end soon. I know if you can go through this, I will be able to because you are such a ... idol? icon? hero? :) .. well, you know what I mean :)

4:26 AM  
Blogger Katie said...

I wish i could be there to hold your hand through this, I understand all to well how it feels when it all seems so hopeless. Time has helped for me, alot. i think the ages 3-4 were the hardest, since 4 tantrums have been declining and as understanding has improved, words take their place. I hope this is the same for you, i will pray for it.

5:15 AM  
Blogger Heather said...

Caleb used to get those raw spots on his rear end too. I just never put two and two together. Nancy, I know my comments probably don't make you feel better and I'm sorry for that,but I am a realist. If I wasn't once where you are I wouldn't comment at all. It may get better, it may not. I still follow caleb around all day. Everything is a big deal. I need to remind him to watch his step, wash his hands, untuck his shirt from his underwear that are constantly sticking out, be quiet, don't make too many noises, how about a "hi, how are you?, instead of a rock on pose and a song when you see someone you know." Even when he is just eating. I remind him to chew good, not to take too big a bite, don't cram it in, swallow before the next bite, pull your plate over to you instead of reaching half way across the table, etc.... Your story of Erik's tantrums remind me so much of caleb's younger days. They do get somewhat better. I still live in a constantly alert state to try and head off any possible trigger. Caleb is getting too big for me to wrestle with. As he is able to understand and comprehend more, I explain situations to him where he could have acted differently to achive the same outcome, so hopefully the next time, he can stop himself. THis is the great thing about our kids getting older. They are more able to make better decisions. When Caleb was younger and would have a meltdown, once and awhile if appropriate, I would immitate him to see what he thought of how he was acting. He would stop and look at me like I was a lunatic. We would both end up sighing and smiling. Now if he starts getting worked up, he will say to me, "just calm down a little?" And I say, " You know it buddy."
Anyway, my point is that Caleb's meltdowns were every bit as wicked as Erik's. Though the potential still may be ever present, it does get better... I promise.

8:26 AM  
Blogger Tes said...

Nancy your words always leave me in awe but your heartache has me filled with pain and sorrow. Maybe you don't want to hear it but have you looked into getting him into a preschool? I work outside of the home and I give all the mothers that are able to work from home and be with their children my utmost respect, but.....sometimes others may be able to add something to our children's lives. I have a dayschool in my area that I learned about from our disabled support group, this was the best decision we made. Lila has grown so much by being with disabled and typical children her age in a classroom setting, has she had meltdowns, damn right but they are few and far between and she is better with regulating her emotions, she is much more verbal too. Thank you for your blog you are amazing, give yourself that.

9:08 AM  

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