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Thursday, January 27, 2011

Reality

Have you ever just been so happy in your little bubble of "normal' and then someone comes along and just sticks a pin in it? This has been my story for the week. I get going about my day and our routine and then something happens or something is said and the big ugly mirror of reality is shoved right in my face. I wonder when to parents of kids with special needs ignore these, or does that ever happen? Is there something that I am just not able to move past, that keeps me so sensitive to comments? The answer is I just don't know?

The last thing I want to be is negative. Yes we have had true heartbreak in our lives but we have also been witness to God amazing healing power, and His ability to put the pieces of my broken heart back together again. True there might always been those seams but giving God my grief  and worry allows me the freedom to live my life. But Satan sure knows where to attack me.

Earlier this week, I had a conversation with someone about a meeting that was going on that I was scheduled to attend. I am a leader of one of the committees and it was a time for people to meet everyone. I knew I needed to be there but I also knew that Josh had to work late and I would have to take James with me right during his bedtime. I also knew that the location is not exactly wheelchair friendly. So honestly I just didn't want to go if I was not truly needed. And in the conversation with this person, she mentioned that her kids would be running around playing and James could play with them. With all of my body, heart and mind I wish that were the case. But it isnt. The reality is, her children will be there running around on fully functioning legs. They will be interested in my son for about 5 mins and then run off and play together leaving my son. But I can say that to her, because that would be rude and make her uncomfortable And really there isnt anything she could do about it anyway. So I went and that is exactly what happened. James even noticed this time ( which crushed me) James asked me if he could get down and run like those kids. It was all I could do not to become a mass of tears right there when he asked that. But instead I kept my game face on and said " SURE honey, you can get down and play OR how about you RACE them with your wheels. I was happy he liked that option.

Then today when I was picking James up from school. I was so happy to hear about his good day. He and I were just strolling out to the car and he was telling me all about his day, when mother and her daughter walked by us. The daughter said  and pointed ( quite loudly) " Hey mommy that is the boy that Cant walk"
And the mother turned around to look and then asked her daughter " do you know why"  Now I know that people are curious as to why such a healthy looking ( and beautiful) child is in a wheelchair but cant you at least wait until you are in the car to talk about him. I honestly don't even think about or notice his wheelchair anymore so when people break their necks to stare or make comments it stops me in my tracks sometimes.

It breaks my heart that that little girls doesn't know James' name. She knows him as " the boy that cant walk" and that is NOT what defines my James or what he is. So I will be ending this post by telling you exactly what DOES define my James!!!
James is determined, sweet, kind hearted, the hardest working human being I know. If you sneeze he is the first to say bless you. He is the giver of the BEST kisses and hugs on the planet ( IMO) . When I bump my foot he always wants to know if I am OK. He loves his friends and his family. He tells the cutest knock knock jokes. His giggle can light up a room. When we do stretches and it hurts him he worries if I am hurting too. His little spiked head literally stops people in their tracks so they can tell me how cute he is. He tells perfect strangers that he like their shirts. He loves to make his mommy and daddy happy. He love to watch football with his daddy and tell the players to "Run it!" He tells me that I need to rest. His favorite game is Angry Birds. He likes to try and scare me by roaring, but then worries that he scared me, so he gives me hugs so I "feel better". He is sneaky. He is SO many many many more things that a boy in a wheelchair and I will spend my last breath making sure that HE knows it!

5 comments:

Sarah

Thinking of you and praying for you. I'm sure it's so hard to have to internalize so many thoughts and emotions when people say insensitive things. Thanks for sharing your heart - you are an inspiration and James is so lucky to have you as his mommy!

Janice Ottosen

Just a quick comment. I have seen some of your struggles and joys on FB and am so happy to see James doing so well. I do want to say that I agree it must be very difficult to hear unpleasant things, however some words may be said in pure innocence and are not meant to be hurtful. The little girl might have been describing James in her limited knowledge of him.

I remember hearing a gentleman on TV who had lost both his legs talk about how kids are so eager to ask him questions. He said he decided to take advantage of that, and was trying to inform them of what actually happened to him and how he deals with it on a daily basis. Their interest and enthusiasm was great and he wished adults would behave in the same way.

Guess that wasn't just a quick comment, sorry! : )

I wish you, James and his Dad all the best in the world and hope to see more of his advances and daily ups and downs. You are wonderful and caring, couple that with all the LOVE you give, James will be having a terrific life.

Sincerely, Jan

Sweet Baby James

Janice, I do understand your point but I think you misunderstood my point in this post. But I guess it is difficult to explain to those that don't live this journey.

Janice

I am very sorry if I upset you in any way, that certainly was not my intention. Best wishes to you.

Sweet Baby James

You didnt upset me Janice. I understand you view point I really do and I appreciate you following my son. This post was not really just about what this little girl said but more about the fact that it is how she sees my son. Children and certainly innocent and I have no doubt that she said it with the sweetest of intentions. In my heart it still stings that those are the words that children would use to describe my son. It is the first thing they see. That is all. So my post was really just me sharing how I see James in a different light and that it sometimes shocks me when the "disability" is the first that everyone else sees. Everyday children come up and ask why James is in a wheelchair or a walker and I always do my best to use it as a teachable moment about how we are all different. But it doesnt mean that I sometimes wish that James was given a different lot in life. It doesn mean that I wish I could be the one in the wheelchair instead of James so he didnt have to worry about those comments, or making others understand. It doesnt meant that sometimes I dont just wish he was just a kids running around.

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