The words shot out as if she'd asked me how old I was. Casual. Curious but hurried.
I said "Excuse me?"
And she repeated herself;
"When did you know something was wrong with Wesley?"
Again there it was. A little less casual. A little more impatient. She was probably wondering why I just wouldn't answer her question.
I replied "There is nothing wrong with him."
"What about his disease?" She said.
"Oh, you mean the day we found out that Wesley is more special than we thought he was? May 8, 2015 at 11:54 am." (Hunter Syndrome/MPSII)
My tone had turned to stone. I hate that question. It's on the list of no-no questions that you just don't ask special needs parents. I especially came to hate it before we knew and little children would ask me or Wesley's Dad that same question.
I know she didn't know. Most people don't. That's how the world is; if someone is different it must be wrong. If it's not shiny and picture perfect it's a flaw or wrong. And anything else that doesn't fit into that normal box tends to make people uncomfortable.
My family doesn't fit into that box because of Wesley's disease. Special needs children are some how only acceptable when silent and they do not disturb anyone else. It scares people because they don't know how to respond. Wesley may be different but he isn't wrong. There is nothing wrong with him. Does he have extra challenges? Will those challenges keep getting harder? Does he have a genetic disease? Yes. But does that make him wrong? Is there something wrong with him? No. Being born with a disease that no one has any control over does not make him wrong.
No one wants anything to be the matter with their child. I understand that. I spent many days and nights praying that he was fine and healthy and that everyone was reading too much into it. If they all could grow up happy, care free, and die of old age that would be ideal. Though sadly, the children with MPS II don't get that ideal. As a parent I live with that fact daily.
And please don't take me saying "no there is nothing wrong with him" as denial - because it is not. It's about breaking the stigma that different is wrong.
If you are curious about someone's condition or why they are special, ASK.
Most people are more than willing to share!
Here are better questions:
What challenges does he face?
What makes him special?
What is he working to overcome?
And they will, more than likely, be very glad you asked, and happy to share.
***Please keep praying. We need all the prayers we can get as we travel to Chicago on Sunday to be evaluated for the Intrathecal Trial that will help save Wesley's brain from further damage - if he gets in. I will update more about that this weekend.
Have a Warriors Heart,
Wesley's Mom
For more information on the Clinical Trial for MPS2, check out this link and scroll down the page to MPS2 (passed MPS1): http://mpssociety.org/clinical-trials/
For more information on the Clinical Trial for MPS2, check out this link and scroll down the page to MPS2 (passed MPS1): http://mpssociety.org/clinical-trials/
I hope that the trial will be suited for Wesley. It is very hard to stand there while people stumble over their ignorance of manners toward the ill. I, too, became over sensitive to their crazy questions. After 3 decades, I can sympathize more with those who have never cared for a loved one in a serious medical condition.
ReplyDeleteThe way I coped with comments (that felt like darts to the left ventricle sometimes) was to basically cut off everyone. Unfortunately, all my friends and most my relatives also avoided me—probably for the same reasons, they felt that they couldn't come up with the right things to say.
When you are in the midst of the care, fighting your way to do everything within your human ability to do for your child, you tend to forget that we are the few and the proud. It's not many who have to deal with what you are going through. I like to think that that is good.
God picked us to do His some of His hardest work on the planet. That means He provides more grace and more of everything for those who make Christ as their Savior. One of the names of God is Jehovah Jireh, which means "the Lord our provider."
https://www.blueletterbible.org/study/misc/name_god.cfm
Others do not understand us, our mission or our needs because the Lord did not charge them to have our responsibility nor did He provide them for such as we have.
Your father and I served under some of the generals in the Iraq war who went on to become the top 4-star generals of the nation's military. I was blessed to serve closely to them to be able to see what kind of men and women they are and had to be in order to handle the incredible amount of responsibility they are given.
To try to understand how much responsibility they are given consider this: If they were offered 4X the equivalent of the richest business CEOs in America, the generals would still not be compensated for their amount of work they do. In other words, when you need the greatest men and women to do the greatest jobs, you can't pay those people.
The people who have the greatest responsibility in this world are also given the capabilities from the LORD to handle it. They answer their calling and they are blessed by God in many ways. That is you. You are answering the most gigantic calling of your life. You will be blessed, overwhelmingly compensated and you will know that God is by your side.
1st Corinthians 6:3 says:
"Do you not know that we are to judge angels? How much more, then, matters pertaining to this life!"
I have to believe that because we have that enormous responsibility in heaven, that we will be given a special position based on our sacrifices and knowledge from perservering. Let it be! —Glen
There is a Mama on Instagram who started the hashtag #theluckyfew, a reference to how she is one of the lucky few people to be a parent to down syndrome/special needs children. I love that. You aren't the unfortunate few parents of children with 'something wrong'. You are the lucky few to parent a distinct and precious population of children. I think the rest of the world has no idea how much they miss out on not knowing these precious kids and adults.
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