Tag Archives: hard days

When the sun goes down and the rainbows disappear.

18 Jun

It’s almost time for Oli to start summer school. She goes for 4 hours a day, 4 days a week, for 5 weeks. She has gone to summer school every year since she began going to school at 3 years of age. ESY (extended school year) is for special needs kids who have shown regression over the Christmas break. If you regress, you go to summer school.

It’s a win, lose situation for us. It’s great that she gets to go because summer break is so long, I don’t want her losing any of her skills, and she really likes school. It gives her more of a structured day and a schedule, which she does well with. It’s bad because it means that she isn’t doing as well as some of the other kids. I guess it makes me a little sad because she NEEDS it. Although, her teachers have told me every year (the 3rd year now) that they are qualifying her based on the emergence of critical skills. Walking and talking. I’m not sure if these really were emerging at the time of her evaluation though.
When they qualified her for ESY this year she wasn’t talking again yet. She didn’t start that until a few weeks before school got out. They agreed on ESY sometime after Christmas. Her walking skills have improved over the last 3 years since she took her first steps. I wouldn’t classify this as emerging however. She’s stronger now, but her walking isn’t that much different than when she was 4 or 5. I think it’s mostly a balance problem. I’m hoping that one day her balance will get better. It has, little by little, year by year, but it’s a slow process.

All that being said…she gets to participate in summer school. With all the other kids who NEED to be there. Who cannot afford to have a regular summer vacation like all of the other kids. This is the part that is hard to swallow. She isn’t like the rest of the kids. She never will be. This is both wonderfully special and woefully heartbreaking.

I try to be positive and upbeat. I focus on what she can do, how far she has come, and the progress she’s made. I try to focus on all of her abilities and not her disabilities. But I would be a terrible, fake, fraud if I told you that I never get sad or mourn her struggles. If I told you that I never get angry at the injustice and unfairness of her multiple disabilities.

Here’s part of the real, honest truth. I get sad. I get sad a lot. Not every day. Not even every couple of days, but it happens. When she’s having an especially hard day and the meltdowns become epic, and the tears become frequent and she refuses to walk and she doesn’t speak a word, and it feels like the day will last forever, I remember exactly how much she is NOT like other children. I am faced with how different she is. I am reminded of what makes me a different kind of mother. I’m not very fond of those days because I REALLY want to be like you. Most days I try to pretend that I am. Most days I treat Oli like she is just like your child. And then we have those days where I just can’t pretend and I can’t ignore the fact that she’s not.

It’s during those days that it becomes hard to chronicle our story and write about our journey through our unique life. I mostly wrote about the positive and people always love reading about the warm fuzzy encounters we have. The pink cloud moments where everyone is smiling and life is full of rainbows and roses. Everyone knows though, this is not always the reality of our situation.

No ones reality looks like that all of the time. So sometimes I’ll write about the hard times, the sad emotions, the tears, and the fear…in the hopes of portraying an accurate account of her life. Of my life. I’ll write it knowing that people will worry about me, they will worry about her, they will question my strength, they will be afraid to offer words of comfort, they will offer too many, they will feel sorry for us, and they will be glad that they don’t have a special needs child. I will write it knowing that some people will not want to hear about this part, they will refuse to read about the struggles because life is easier when you don’t know about the difficulties of it all. Life is easier when you ignore the pain and only celebrate the happiness. I know. I was like that too. Some days…I still am. People may choose not to read this part, but hopefully… they will come back. Hopefully, people will continue to be inspired and hopeful about my daughter even when I describe my hard days. Even when I talk about my pain and disappointment.

Because this is our life. We live life on life’s terms through the good, the bad, the smiles, and the tears.

And I really wouldn’t want it any other way.

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