Wednesday, January 29, 2014

"Normal" Worries

You know I live in a big world within a small bubble.

Not everyone has a child with disabilities and not everyone has a child with Fragile X.

For me, this is all I know.

Many parents think a lot about the day that their child starts making friends, gets old enough to walk to their friend's house around the block, starts to talk to friends on the phone non-stop, gives a speech, starts to drive, goes on their first date, has their first kiss, starts a job, goes to college, gets married, has children, moves far away and all the possibilities that accompany those milestones and accomplishments.

I think about those things too.


But, not really.

I don't even know if they'll do those things.

I was talking to my sister, Kirsten, a couple of days ago and she asked if it gets easier as they get older.

I'm still trying to answer that question.

I don't really know.

It's fun having them talk to me more as they get older and to see the things they can do now that they are learning more. Brother doesn't have as much anxiety as he used to and being able to have Sister tell us how she feels has added a bit of an ease to our dealings with her. Baby now, most of the time, will walk to where she needs to go instead of melting completely and making someone carry her.

But then there's ALL the other stuff I have to worry about just when I think I've got it under control.

Schizophrenia was something that Marc's grandmother struggled with.

Mental Health is a possibility for those with Fragile X Syndrome.

Seizures are a possibility for children with Fragile X Syndrome.

So when Sister seems to talk to herself and then answer he own questions when she is alone in her room, you begin to worry about the connection between Schizophrenia on her dad's side and the mental health issue that can be relate to her X Chromosome from her mom's side.

When Sister has "zone out" moments at home and in class and comes out of it tired and incoherent, or "zones out" and then startles into yelling, "I had a nightmare!" and won't stop complaining of a headache afterwards you hope it is not a Fragile X caused seizure.

I want to worry about the fun little things she'll do someday, but all the great things I hope for sometimes get overshadowed by all the things I have to be prepared for or watch for so that I can make sure she is getting the care that she needs to become her best self.

No matter what your child's ability you always want what's best for them. I just have to say it seems so hard to me today because I hate having to watch for every negative thing that will come with growing up AND then add the weight of all that can occur because of Fragile X Syndrome.

It's just sitting with me today and makes me a little uncomfortable.

Can't I just know what it's like to have "normal" worries for a day? I'm not trying to downplay what parents of children without significant struggles deal with everyday. It's just tough being a parent. Period. I know that. Just today, I don't want to stress about all possibilities I am told can come with Fragile X. Instead I want to worry about the possibilities I am told comes with childhood.

That's it.

I know, I'm whining.

I just need to put it out there.

I want those in my situation to know they're not alone.

I want those not in my situation to know that they are blessed to have "normal" worries.

Like I told Nalani the other day, and I have said it many times before, "In this house NORMAL, is just a setting on the dryer."

2 remarks:

Paola said...

Rachael, let me start by saying that I read your blog often,I love your writing and you are always so funny. I don't comment most of the time because I can't find the right things to say. Today I feel different(smile) This morning I was watching on YouTube the cases of two families. One with a little girl with Schizophrenia and the other one it was a young man with severe OCD. In both cases the parents said thatmost of the time it was extremely difficult to take care of their children but they would do anything to help them, and they refused institutionalized care. I thought of you immediately, because those parents were completely devoted to their kids.Just like you are. I am no expert in the area but I used to work with children with different types of mental illness. Hearing sister talking to herself in her room and answering questions is a reason for celebration because it is completely normal behavior in children.When people hear voices inside their heads, it is as if their inner thoughts are no longer alone. The new voices can talk to each other, talk to themselves, or comment on the person's actions. The majority of the time the voices are negative. Criticizing the person or telling them to hurt themselves. The person loses interest in things they usually enjoy and become unable to experience joy. Sister is not that way at all, for what you tell us she gets pretty excited about stuff. I completely understand your worries about the future. Sometimes I wish I could keep my kids little because when they get big so the problems. Are they going to chose good friends, stay away from drugs, marry someone abusive, have a good life in general? It never ends :) You are amazing, so dedicated to your family. Your kids wouldn't be so well adjusted if it wasn't for all the time you invest in them. I am learning to live day by day and not worry so much about the future. It was causing me too much anxiety. I am learning that it doesn't matter how much I worry about things now, it is a process.Again, you are amazing my friend, do you know that? I love you. We should visit sometime.

Marc and Rachael said...

Thank you Paola. It's always nice to hear words of encouragement and praise. I just keep hoping/praying for the best ;)