Friday, June 1, 2012

One of those days...Rett Syndrome

Every once in a while a special needs parent has one of those days. Those days we don't often talk about or admit to. Not publicly and not to anyone..not even family. We just endure it and let it go. Then there are days when we snap. Today was and still is one of those days here.

This morning I took Abby to Physical therapy after having a month off. She woke up smiling and happy as a clam. I woke up grumpy..still mad at her brother from the day before and pretty sure I may have missed my depression and anxiety meds for a few days. I could just feel it.

When we got to therapy she was happy. When we started..or she started working she started to whine. That bitchy I don't want to do this, stomp her feet whine. I tuned it out. She started to growl at me. That's when the guilt-aggravation-feel sorry for myself started. God why do I have to put up with this? Why do I never get a break? Why must EVERYTHING be such a struggle? This poor me thing us parents do. It brings on a guilt for even feeling that way that is unimaginable. SHE can't move. She can't talk. She has scoliosis and is tube fed. She is hurting and I'm sitting there sick of it. I don't pull the selfish asshole card often but this morning I couldn't help it. I was angry with her. I was angry with myself.

As we were leaving she decided to get back at me in the only way she can and started biting me. When I got her jaw torn away from my head I decided she was gonna walk and she dropped like an abortion protester. Dead weight. Take that Mom. I calmly carried her to the van and calmly put her in it. On our way to her next therapy.

On the way...Miss Happy Clam was back..until we got there. The whining,clawing, screaming started again. I quietly tried to sooth her. Begged her to stop and stroked her hair. She is weak. She has scoliosis that is ravaging her back. I know she doesn't want to do this. We have no choice. I started to get aggravated with her again. She continued to bitch..then the real tears came. Oh no. Real tears kill me.

While we were waiting for the massage therapist the receptionist let us know we were out of our pre-paid visits. Panic....Did I want to pay today or next time?? Panic...stuck on stupid. I muttered Next time please. Felt like I was going to throw up, My mind was racing while I'm holding my flailing,screaming, out of control child. Then she leaned in for a cuddle, kinda wiped her sweet, perfect nose on my shirt. As I went to pat her back she leaned in...and bit me. Just as hard as she could and lurched back.

I am not a crier. Never have been. It takes a lot. Bout that time the receptionist sat down next to me holding a baby. A perfectly normal, happy baby. I lost it. I burst into tears and was darn near choking to death to keep them from being audible sobs.

After her massage she calmed down. In the car on her way home. Happy clam. I just pulled over and let it all out. I cried because she cried. I cried because I was mad at her. I cried because I had the nerve to even think,"Why should I have to deal with this? Constantly. 24/7?"I cried because I will never have anything that even resembles normal. Then I cried because I have no right. I'm not trapped in a body that doesn't work. Other special Moms know what I'm talking about here. A special child brings more love and joy than you ever thought possible. They also bring more emotions,regret,what if and poor me's than you'd ever care to admit.

Today was one of those days. Sometimes you just lose it. For me I don't think it was OK. If I was talking to someone in my exact situation I would tell her it's OK to feel this way. Today was one of those days.

1 comment:

Amanda Ellis, MT-BC said...

I can't imagine what you go through every day. The days turn into weeks, the weeks turn into months, and it just seems like you don't get a break or an easy day.
I don't know where you live, but from reading your post, it really sounds like you need a break-no matter how long or short, you need a break for yourself.

In the meantime, try to remember that the worst days usually are triggered by outside stress combined with the daily stuff you deal with all the time. Don't be so hard on yourself. You're allowed to make mistakes and will make mistakes. Most parents of nonverbal children have to guess what's going everyday with their child, just as you do. Don't blame yourself for making mistakes-just be glad you are there taking care of her and know how to solve the problems when they are discovered.
You are one of the few experts of your child in the entire world. That's a great accomplishment in and of itself but its also a stressful situation to be in. How can you teach more people about your daughter so that you can have more help?
If you are feeling housebound, invite people who are accepting of your daughter over to be with you while you are at home and taking care of your daughter. Surround yourself with people who accept both of you for who you are for socialization on a regular basis.
Above all else, keep doing a great job. Take one day at a time and keep going.