Amazingly, Happily Normal

A wonderful thing happened last night. At least it’s wonderful in my mind. I’m going to just tell the truth here. I know there are some who think it’s wrong to have certain views or feelings, and even if you do you’re not supposed to say them out loud, you might offend someone. I don’t believe that is helpful to anyone. If you don’t acknowledge your feelings, or you are not allowed to express them, you will never get past them. You will never hear other points of view that can help change your way of seeing things. How can becoming defensive and more withdrawn because you are afraid and feeling guilty lead to acceptance?

Last night my husband and I went to my daughter’s open house at school. The school is an all special-needs school an hour away from our home, so we don’t have the chance for a lot of face-to-face involvement unfortunately. Since this is her last year we didn’t know how useful open house would be, but she wanted us there so badly, and there was no way we were going to disappoint her.

I have to admit that the older she got, the harder it got for me to see the differences in what stage she was at and what she was capable of and the “typical” kids her age. It wasn’t that I wanted or needed her to change, but I was so sad about what I thought she was missing out on. My sadness became blinders, because I couldn’t see the fullness her life already had.

Something changed inside me over the last couple of years. As I saw kids who were disrespectful, mean, yelling swear words, making messes, and treating their parents like crap I realized I did not want my sweet, innocent, good-hearted baby girl to change who she was at all. I realized how blessed I was to still be called Mommy, still leave cookies for Santa, and to have a child who knew right from wrong and didn’t know how to be mean or disrespectful.

Two years ago I went to see my daughter promenade before the prom. I sat in the school cafeteria, in a room full of “disabled” children, and cried. I wanted so much for them to be accepted by “typical” teenagers, and to have normal dates and parties and proms. I didn’t know to feel guilty about it because I thought I was wanting it for her, I was sad for her.

Last night was amazing. We got to the school and she was so excited saying “hi” to all of her friends and hear all of them say “hi Rach!” She was so proud to give us a tour and introduce us to everyone. I never knew she was so proud that her dad was an electrician and works “every day and week for us”, and that she thought everyone else there should love him too! I saw her sitting with her friends in their classrooms smiling and joking. It was amazingly happy.

On the way home, my husband told me that he had been thinking for a long time about what I had been saying, and that I am right. Rachel is Rachel, and she’s Daddy’s girl, and she is perfect for just who she is. And I realized that last night not one sad thought entered my mind. All I saw were kids being kids, and roomfuls of proud parents. I realized that I was proud to be there, and that this world we were in was perfectly normal and perfect. I realized that no matter what we go through with epilepsy, or how difficult the behaviors can be that have to be addressed, we are now happy as a family, and we feel complete, and our normal is no different or less than anyone else’s. We just are, and we no longer would want to change a thing.

We Will Never Take the Good for Granted

I haven’t been writing a lot lately, mostly because we have been in crisis mode and I don’t like to get negative. During this time I vent – and I mean vent! – to certain friends who always just listen and make me smile. Then I keep going and doing what I have to do, or, I should say, figuring out what I have to do. That is 90% of the  battle.

Monday I had to call the bus company and tell them not to pick Rachel up for school in the morning. She was surprised that I did this, I threw a wrench in her pattern of acting however she wanted in the morning and still getting on the bus. Frankly, we didn’t know if we were going to send her back to that school at all. This is her last year, and I think she’s just had it. She knows it too well and knows how far she can go with behaviors and still be back the next day.

Well, Monday I had to explain to her that if she were going to fight me all morning, I couldn’t send her on the bus and to school anymore. I couldn’t spend all day afraid of a phone call that she had another particularly bad outburst that could hurt someone else.

We take it one day at a time, right? So I woke her up Tuesday and asked her if she wanted me to call the bus company again. She popped up and said “No, I’ll get ready!” When she was waiting for the bus I gave her one of those rubber wristbands to wear, and I told her whenever she feels like she may get angry, look at the wristband and tug on it. It’s working so far, thank goodness those things are nearly unbreakable! 

Of course nothing is permanent in our lives, or even consistent, and this new calm will probably only last for days or weeks. But that’s okay, because it’s my job to figure it out. But it’s also my job to make sure that I work through my feelings, and make sure I vent  enough that stay in good enough mental shape to take care of her! If she had an illness and needed help, I wouldn’t tell her she was on her own. 

In the meantime I am enjoying reading what everyone else is writing. And I am remembering that I am not alone, and that we are blessed to be able to appreciate the calm between the storms all the more. We will never be those people who take everything in life for granted, and I am thankful we’ve been taught to see how good the good is. We’ll never be those people who can’t enjoy life because they have no idea what they have to be thankful for!