Saturday, March 10, 2007

My Pity Party - No need to RSVP

Okay, this blog is all about Ethan. But I'm carving out a little me time here. I guess I'm hoping this will be a bit cathartic.

We've been on a roller coaster ride for 18 months and counting. I've been getting through all sorts of emotions with relative ease and it's probably because Ethan is a really positive distraction from those feelings.

I think most days, I just keep my head above water by focusing on the schedule and keeping Ethan happy. I don't dwell on stuff that I find scary or depressing, because it scares and depresses me. He has so many pressing needs right here in the present that it's a waste to spend much time worrying about the future.

But the fact that he may have apraxia of speech has hit me like a ton of bricks. I don't know much about it, but what I do know scares me out of wanting to learn more. Apraxia is a neurological disorder, which in and of itself is disarming. It's a condition that makes it difficult or impossible to speak. Like autism and many other disorders, there is a wide spectrum of what is possible, from mild to severe. I was hoping that Ethan could be "neuro-typical" (a term borrowed from this blog), even though we have been prepared that might not be the case. CMV is truly heinous.

Why is this apraxia thing suddenly more concerning to me than the fact that his eyes aren't working right and he'll likely need surgery? I guess because it's a corrective surgery and he's already been through major surgery, so I'm not as upset by something that is routine and seen as an outpatient thing. But not being able to talk? Come on. That's heart-breaking.

Mom reminds me that he's gotten through so much already, so he'll get through this. No cerebral palsy, no more torticollis, no more apnea, and hopefully someday, no more acid reflux, and a pair of eyes that look straight ahead.

I'm normally just so grateful and optimistic, but not today.


Shiloh said...

God gave Ethan to you for a are the best mom out there for him. You have been through so much already and I know how easy it can be to dwell on the negative. From what I see, Ethan is an adorable, happy, loving boy. You are an amazingly strong and positive person who I feel blessed to know through Ethan's blog. Just know that you are in my thoughts and prayers. If you ever need to vent, please feel free to e-mail me. Isaac and I are sending hugs to you guys!
Shiloh (AKA Isaac's Mom)

Drew's Mom said...

You are a very strong person, and I pray that you are worrying unnecessarily for Ethan. That is what Mom's do - worry about every detail. And it is OK to have your down day - or days! I pray that everything will turn out OK, and you will not even remember the day you felt this way because of all the amazing things Ethan is doing!

a.k.a. "E-Boy" said...

Thanks for the wonderfully kind words, fellow moms of deaf little ones. I am so thankful to have so much support and count yours as a real blessing. There aren't many people (here) that have walked in our shoes.

I'm starting to feel better already:-)

Britt said...

ok so maybe todays not the day that ethan will do everything you want him to be able to but its in my prayers that one day he will and i know that its obvious that all the best doctors and all those other people are doing their best to make that be possible for him to lead a healthy normal life even if he dosent end up talking right or hearing as good as he could or seeing stright he will always know he had a mom and a dad who tryed their best to help him all they way just remember i love you and your little guy too and you are always in my prayers and have been since the day you told me he was deaf i hope all this makes sense to you

Laurie said...

I'm a little late jumping in to this pity party but saw it earlier and wanted to write when I had more time. God gave Ethan to YOU because HE knew you would be the best parents for him. When you wrote, I could only imagine what my parents went through 40+ years ago when they were told that I was deaf and would never have a normal life. But, God gave ME the best parents in the world and they didn't have the support system that is in place today for the deaf and hard of hearing community. I would not be where I am today in my life if it had not been for my parents' desire for me to be as *normal* as possible. It wasn't easy, I'm sure, especially when they were told to put me in an institution. They were told that I would never talk or hear or be like the other kids. It wasn't easy but the hard work was worth it. Ethan WILL be able to be successful in life because you have that desire for him.

And it is okay to have a pity party once in a while. I'm glad it is over!