Tuesday, February 2, 2010

Joshua's Journeys #30 -Easter Seals

Mid January Josh and I had our first visit to Easter Seals, a great organization that helps special needs children. They have an audiology department that I had heard good things about. It was between Easter Seals in Villa Park, or going to a Westchester campus of Children's. Easter Seals was much closer, and the people there were very friendly. When Josh was in the NICU Phil and I had gone to a parent's night out where we were able to meet other parents, parent liaisons from Easter Seals, and enjoy a night of wine tasting (it was at a Wine Bar--too bad I still wasn't sipping any wine at the time, but Phil sure enjoyed it!). We met Sharon, one of the liaisons that I had been in contact with over the phone for a few other things, and our personalities clicked immediately. It was so nice to hear that we weren't the only ones doing and thinking some of the things we were. At any rate, she had become an instrumental support person and great person to network with.

Sharon met Josh and I practically at the door our first day at Easter Seals. We went to the audiology department for a few more hearing tests and to discuss hearing aids. Joshua absolutely hated the extra hearing tests and had a major wardrobe malfunction (the only time in public which really is surprising considering). The audiologist sat down with me and we worked on how we could keep hearing aids on Josh's ears. The structure of his ears were so floppy, and one ear was already curled in, however that ear ended up being the one to hold the hearing aid on the easiest. As a quick sidenote here, many people noticed Josh's ears first as being different. I LOVED Josh's ears. If I could've known that I wouldn't physically have him here today I would've gotten earmolds made, like some do handprints of thier kids because I loved them so much. The floppy ears were so adorable, and the one, (yes Crystal you noticed in the picture correctly) was shaped like a heart. With the hearing aids in it was hard to tell it was heart shaped because the aid pushed it up a little which is why that side fit so much better. But I would always kiss and tickle his ears, maybe they didn't look like everyone else's ears, but I loved his ears so much. I think CHARGE ears are the cutest, although I know if we had a longer journey with Josh and made it to trying the cochlear implants there would be a time when we'd have to do some reconstructive surgery on his ear because of its floppiness.

Karen, the audiologist helped me facilitate the delivery of the hearing aids so I could get them as soon as possible since she knew that getting a jump start on the aids was a big deal to me (although I was told it would still take 4-6 weeks, she got them to me in only 3). I was told at Children's that we had to go through the steps of hearing aids to prove that they wouldn't work for Josh before we could start down the cochlear implant path, which everyone knew Josh would need considering his profound hearing loss. Not that I wanted more surgeries for Josh, but I wanted the implants as soon as possible so we could work on speech or any hearing as soon as possible too. We were back at Easter Seals in February when the aids came in, but it was a great first experience with lots of helpful and resourceful people. Sharon, and the audiologist came to Josh's funeral mass and I later spoke with Sharon when I was delivering some donations to Easter Seals. She mentioned that she and Karen sat in the church holding each other's hands and holding back tears unsuccessfully. Josh melted so many hearts with his smiles and actions. We were so glad to have crossed paths with Sharon and others at Easter Seals. Last year our family walked their "Run for the Kids 5K" and we plan to again this year.


Crystal M. said...

We have never used easter seals but I have heard wonderful things about them from other families as well.
I love little CHARGE ears as well, Eva is just adorable with her little ear.
Crystal and Eva

Nonna and Grampa said...

What a most beautiful blog post. How can anyone ever understand the depth of a mother's love? In your post you give us a glimpse of the depth of yours. I am so happy that you found such profound support at Easter Seals. I will always give to their donation drives because I know-thru Josh's experiences with them-that they will be there for another family in need.

Christy said...

I remember before knowing he had Charge and before I had even met Josh, I was told that among breathing concerns, his ears were not "right." My response was-so what, big deal? I would agree that it was one of the most endearing features of Josh. Can't wait for the next 5K--with 4 kids?!