January 2, 2012

"Pinball Wizard" lyrics

During Christmas week we had the opportunity to spend lots of time with both sides of the family. What a blessing. One evening we had a group over at our house and several people were playing the X Box. A song came on "Rock Band" that I know I've heard before, but I'm not sure if I'd heard it since Ethan's diagnosis.

The song, "Pinball Wizard," performed first by The Who in 1969 is about a "deaf, dumb, blind kid" who sure plays a mean pinball. Hearing the song, as a parent of child who is classified as deafblind, made me wonder if anyone else (who doesn't have a special needs child) even thinks about the lyrics as the sing along to the tune. While the song in itself is not explicitly derogatory, it still rubs me the wrong way.

Since becoming a mom and having Ethan - remember we got his diagnosis at 4 weeks, so we've know since almost the beginning that Ethan will be "different" - I've become very aware of what others say about people who are not typically developing. I'm sure that most people don't think about what they are saying when they use the "R" word or when they stare at people whose delays are easily visible. For all those people, I wonder, what would they think if someone they loved had physical or mental disabilities. What if their child was born with special needs? After wanting to scream at them, which I haven't done yet but I can't promise that I won't be in a confrontation at sometime over the issue - I want to educate. I want to introduce them to my amazing little man who I love with all my heart.

In someway I know that we are just getting to the place where we are going to get more and more of those stares. Ethan, at this point, looks healthy. He laughs and smiles and when sitting in the stroller or in a shopping cart (which isn't that often) he looks great. Since he always has a hat on to help him keep his hearing aids in people don't see them and since he currently won't wear his glasses, Ethan looks pretty normal. People often make comments about how cute our little man is - we don't deny that he is adorable! What people don't know is that he is visually and hearing impaired, physically and mentally delayed and has a nasty terminal illness that impacts every part of his body - each and every cell in his body has something "wrong" with it.

When people see us and ask how old he is, and I tell them 17 months I get all the "typical" statements - "Oh, I bet he is getting into everything." "I'm sure he is a handful." "Keeps you busy, huh." etc. Sometimes I just politely nod and try to move on. Sometimes I say that he has special needs, so he's behind. As Ethan grows, it will become more obvious - he'll get too big to be in the stroller or riding in the shopping cart, someday he'll be walking with his walker, he'll bond with his hearing aids and won't have to wear hats to keep them in, etc. You know the what the weird thing is about all of those things - I HOPE AND PRAY that Ethan makes each of those milestones! The very things that will make him "stand out" are things that we will be thrilled about! They all mean PROGRESS!

So, what does the Lord have in store for us in 2012. We don't know. I pray for comfort, peace and blessings. I pray for Ethan to continue to make progress and stay healthy. I pray that he will continue amazing everyone as he writes his own PBD story.

Please pray:
  • That 2012 will be the year that many people open their hearts and minds to Jesus. That it will be the beginning of their new life in Christ.
  • That our GFPD families will feel the Lord's comfort, peace and joy this year.
  • That children with PBDs will remain healthy and strong, making progress in their own way.
  • That new families who face the PBD diagnosis will be able to find The Global Foundation for Peroxisomal Disorders and know that they are NOT ALONE!
  • That our Special Connections group at Baby TALK will continue to minister to more families in Central Illinois who have children with special needs and that together we can work for making our communities a safer and more accepting place for families and children with special needs.
  •  That I will draw nearer to my Savior and hold on to Him for ALL my needs.

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