Tag Archives: special needs parent

The Broken Glasses

22 Oct

I am always navigating through a crazy maze of trials in my life. Always trying to figure out if the “what is” now is “what it’s supposed to be.”  I constantly examine this concept with myself and especially my children.

Last Tuesday was an especially difficult day. I struggled through the day and my kids weren’t even home from school yet. Once my little ones arrived home things went from hard to climbing Mt. Everest. Blaise my sweet boy who has Prader Willi Syndrome and Autism was in a state of destruction. As dinner approached I asked my sweet angel where his glasses where. Very nonchalantly he responded that they are broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses, broken, twisted and shattered in little pieces. I found myself cracking into those little pieces too. I lost my patience and started yelling, I hate that part of me that comes out when my soul cracks.

I screamed at him, “Why, Why, Why?”

He never answered, he didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue, they are at the surface, they are the like the skin, they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be normal? Why doesn’t my sons brain work?

There it is the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive, tough but working. In reality it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself, I cried for the stress that his syndrome can create in me, but mostly I cried for him. I cried for what I thought was missing. I was quiet after I let it all out, I was quiet all through the days that followed. Something had opened up and I had to finally face it and deal.

I had to accept what is.

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Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failures or “lack of’s” in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my ah ha moment that I can accept what is now and trust that things may look different in the future. I have to let go of what I think it is “supposed” to look like in my life, and my kids lives.

As the parent of a special needs child I tend to be on a roller coaster of emotions daily. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgement to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

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Smell the Roses

17 Dec

It’s time to stop and smell the roses…

I have learned so many things from being the parent of a special needs child, but the biggest is to cherish all the little things in life. When Blaise was a little baby I was so consumed with things like, was he bigger than other kids, did he speak as much as other children, what percentage was he on the growth chart, did his eyes cross, and was he really different than other children.

Funny thing is I don’t think about any of that anymore, well not really. I have really learned to just enjoy my son for who he is. I have learned to appreciate all the little things that make him Blaise.

He may not have walked at 12 months, but he did eventually learn to walk.

He may not have learned to talk at 2 years, but he is talking now.

He may not be able to put on his own shoes, but at least he has two feet to wear them on.

He may not have perfect vision, but he looks damn good in his glasses

He may not understand abstract concepts, but he has an amazing sense of humor.

He may not be able to sing the words to his favorite songs perfectly, but he can sing the tune and shake his booty like no one else I know

You see there are so many things that he can do, and do well. He just does them on his own time. I really struggled with that for a long time, I mean a really long time. Now I just love him for who he is. I love his spirit. He has the ability to brighten my day with just one look, just one smile, or just one dance.

He has taught me to not care about what people think. When you have a child with special needs you have to let all of that nonsense go. You can’t care about what people think, it would drive you mad. You have to be able to tolerate all the stares when your out shopping and your child goes into full blown meltdown. You have to put on a body of armor and just let it all bounce off of you.

I am really enjoying the idea of just stopping to smell the roses.

I have learned to really appreciate all of his accomplishments big or small. When you have a child with special needs even the smallest of things can be a major victory.

You know we all have a lot to learn from these kids. Maybe we all need to slow down in our lives. Blaise lives in the moment, he only lives for the moment. That is a great lesson for us all. I know it is for me. I spend too much time worrying about the future.

 

So dear readers. Is it time for you to slow down and smell the roses in your life. Are you spending so much time trying to do everything right and perfect that you are missing what is right in front of you? Take a break and enjoy your life.

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