Dancing without the sound of music

I ran across this story on Yahoo News. I hadn't really thought about dancing being a challenge for people who are Deaf, but obviously not being able to hear the beat of the music does present a problem. As with many obstacles, where there is a will there's a way--this is a pretty amazing video.

Evan's Present

Happy Birthday Daddy!

Today is my daddy's birthday--he is really getting up there (it is his 30-somethingth birthday). I gave him a special birthday hug, but I wasn't about to sign his card. I wouldn't even make a mark on it with a crayon. I mean really; he knows who the card is from--it's not like he has other sons to confuse me with!

Today we drew this picture together...well, OK that was all my daddy. Isn't he a fantastic artist? He draws a pretty good Elmo and Cookie monster, and if you look really closely there is a rendition of my doggy and kitty puzzle pieces in there as well. There is even a picture of me sitting on my green potty (mommy and daddy think visualizing the goal will help me get there sooner--I still have to get over my extreme dislike of feeling that plastic seat on my bum!)


And there was special birthday snow for him--how neat is that? I like to look out the window at the snow falling. I like to lick the window too--it's cold on my tongue! You can see all my little "snail trails" on the glass.


Here is my little Evan tree in the snow. You can see how the snow is really coming down out there. The tree has buds out already--I hope it doesn't get too cold for the tree.



And I saved the best for last. Before bed, mommy and I were playing. She likes to help me practice walking with the "tough love" method. What this means is she holds my hand when I'm standing, and lets me find my balance point. Then she lets go. Usually, I immediately drop to my knees or I take a step forwards and fall (she is right there and catches me). But tonight I did something really amazing--I took four (yes, mommy counted 1-2-3-4!) tottering little steps before I fell. Mommy and daddy were so proud of me. After that, the best I would do was 2 steps one other time. What can I say--that walking wears a fella out!

Evan

Happy Easter!

Auntie Jen had the whole family over to her house. Evan got an Elmo basket from the Easter Bunny--he liked the basket more than the stuff inside it (I'll remember that for next year). We hid eggs inside, and Jeremy helped Evan find them. I was surprised...Evan showed more interest than I expected him to.

Evan likes the Elmo basket...


Daddy signing "egg" during the hunt.


There's something in here--how do I open it?


Not very interested in looking for eggs this year.

To Brush or Not to Brush...

That is the big question around our house these days.

I do have a confession to make. Evan's teeth get brushed maybe once a week or couple of weeks. Jeremy and I feel horribly guilty about this... Evan is quite the little calculus (tartar) former--which, ironically enough, is pretty common with tube fed kiddos. His teeth get scaled about every 6 months or so, but the buildup on some of the lower teeth is still really bad.

It's not because we don't think it's important to brush--we know it is. Here is our dilemma: we think it makes him sick. Because Evan's swallow is so uncoordinated, all the toothpaste foam, saliva, and gum bacteria pool in his throat and then get regurgitated out his nose, and we theorize up into his eustacian tubes. We have noticed a pattern--the nights that his teeth do get brushed before bed, his breathing sounds really "junky." The last few times he has gotten an "ear" infection or sinus infection were preceeded a few days prior by teeth brushing or eating orally.

Here is what we have tried so far:
--Brushing teeth in the morning (still sounds junky, and seems to have the same pattern in terms of illness)
--Brushing teeth with Evan sitting up (he is so squirmy, I can't effectively get in there to brush anything)
--Brushing without toothpaste (the bacteria are still being released from the gumline, and then he's not getting any benefit from the "tartar control" in the toothpaste)
--Brushing with the suction machine (tried that once--led to a super-freak-out-melt-down)
--Letting Evan brush his own teeth, aka "chew the toothbrush" (aside from the questionable effectiveness, this still leads to lots of pooled secretions that regurgitate out of his nose)
--Finger-tip toothbrush (the last time I used this, Evan had only 3 teeth and bit me with such force that I cringe to think of how badly it would hurt with the mouth full he has now)

I hate the choice we are faced with--tooth decay and gum disease in one corner, combined sinus and "ear" infections that preclude hearing aid wear in the other. Evan has one of these infections right now, and you guessed it--we brushed his teeth three nights ago.

What to do??? If any parents out there have any suggestions, I would LOVE to hear from you.

Evan's First Phone Call

Around 7:30 last night, my cell phone rang. The caller ID said "Jeremy"--interesting because Jeremy was busy on the computer, just in the next room. I thought maybe he was being funny, and asked why he was calling me. He said he wasn't. I answered the phone and was met at the other end of the line with some heavy breathing that I would recognize anywhere--it was Evan! He was playing with daddy's phone and must have hit the "last number redial." The nicest phone call I received all day.

Making phone calls...our little boy is growing up. Stay tuned for "Evan's First Texting."

Local Deaf Community

At Parent-2-Parent last week, two outreach volunteers from the South Eastern Washington Service Center of the Deaf and Hard of Hearing came to the meeting. We are now on the email list to get information about Deaf events in the Yakima Valley. One of the volunteers is going to try an coordinate with us to do some one-on-one signing/play with Evan. They also invited us to their St. Patrick's Day party on Saturday. So yesterday, we packed up Evan, a tray of apples with carmel dip (it was a potluck, and I figured I should at least bring something I knew the sign for!), and drove over to Yakima for the Party. Jeremy and I were both more than a little nervous, but we knew that sooner or later we were going to have to take the step to start getting involved in the Deaf community. We both want Evan to grow up with a sense of belonging, and it's becoming more and more apparent where that is.

We were greeted at the door, and it was figured out very quickly that we were hearing. But everyone signed slowly for us and almost everyone could also speak, so it was not hard at all to communicate. Both of the outreach volunteers we had met before were at the party. We played BINGO (Jeremy won one game--lucky!), and ate all kinds of green food. Evan got lots of attention--lately he has taken to the 5-point crawl, pushing his head down on the floor in front of him. One Deaf person developed a new name sign for Evan (which I think we are going to start using--I know why they say hearing people can't give the name signs, we just aren't creative enough!)--make an "E" and push it slowly along the back of the other hand, like a bull-dozer. This sign fits him on so many different levels--not only does he look like a little bull-dozer with his crawling, but he is also so persistant at everything he does. It was also a great experience watching ASL conversations. We are looking forward to the next event!

Evan meets the potty...

Jeremy and I are anticipating potty training Evan will be a lenghthy process. Obstacles abound--communication issues, the night-time tube feeding (I don't think it would be possible for him to stay dry at night until he's not having 500 mL of liquid pumped through him). Having said that, I don't want to delay starting simply because we think he will be in diapers longer than a typical child.

I bought Evan a potty chair today. I have had my eye on this particular model for a while now--I like that it has a nice, broad base that will help Evan feel secure sitting on it, and that with the top down it can be used as a step-stool (it can hold up to 300 lbs!).


(Although this isn't meant to be a sales pitch, if any fellow moms out there are interested go to www.booninc.com. I found the "Potty Bench" at Babies-R-Us, but per the webpage Target and various baby boutiques carry it also).

Here are some pictures of Evan's first time sitting on the potty chair--the lid is down and his diaper is on. Baby steps--he absolutely would NOT sit on it with his diaper off!


Evan was more interested in opening and closing the lid than actually being on the potty. But all in all, it was a good first experience.

Pre-Weekend Recovery

Earlier in the week, Evan had come down with a bug. We had been planning on all going to Seattle and staying over Saturday night (I had some continuing education and Jeremy and Evan were going to hang out). Thursday night was rough with Evan setting his alarm off multiple times, and Jeremy starting to come down with the same thing Friday morning--so we decided to cancel our trip.

Amazingly enough, Evan really seemed to be feeling better Friday and slept peacefully through the night. Jeremy felt less like he was getting sick (amazing what a little more sleep will do!), so with his blessing I went to the CE by myself. I just got home a little bit ago, after a short detour to go shopping (the next post is about what I bought). I also ran into several classmates (technically the class behind me) from optometry school--it was great to see everyone (and for some, their kids!).

In Memory of M

Earlier this week I found out a friend of mine had died unexpectedly. Or rather, unexpectedly to those around her--she committed suicide.

M has been on my mind in the ensuing days since I learned of her death. She wasn't a close friend, but someone I came to know because we had a kin-ship of sorts--we both grieved about aspects of our sons' lives and the things they would never experience, and we both felt the isolation that comes from living in a world full of people that had no idea what we were feeling, having not experienced it themselves. She rarely left her house, and we talked mostly via emails. Obviously, my "isolation" was just the tip of the iceberg for what she felt.

I have been trying to think of a way I can honor her memory, and I think I can do it best by sharing her story--a story that has an additional layer of tragedy because she lost her son 3 years ago. He was 14 at the time, had been drawn into playing the choking "game." You have heard about this game before--kids cutting off their own air supply by tightening something around the neck, loosening it just as they are passing out to get the rush that comes with "coming back." I don't know if he was experienced with the game or this was a first time, but her son had used a belt and did not loosen it in time. He accidentally hung himself in his bedroom closet, and his mother was the one who found him, when he didn't come down for breakfast, already cold. His step-father performed CPR, 911 was called, the paramedics transported him to the hospital, where he was pronounced dead. This was M's only child.

I did not meet M until some time after her son had passed away. She was a sweet, gentle person, with a warmth that you could still feel beneath all the layers of troubled grief. M did all the things expected of a grieving mother. She shared her son's story on the news and created a memorial website to spread the word about the dangers of playing the choking game. She released balloons--with messages to her son in heaven--to commemorate holidays, the anniversaries of his birth and death. She went to therapy and tried medications. There's no such thing as a "right" way to deal with death, no fool-proof method for making sense of the absurdly senseless. But to my mind, M did everything that one could expect of her.

I think part of the reason her death is weighing heavily on my mind is my initial reaction--I remember being deeply saddened, but not shocked. The more I thought about it, I realized that on some level I might have suspected something like this could happen. I found some emails from a few months ago we had sent back and forth, and re-read them. With hind-sight, I can feel the despair in her words--cloying and thick. At the time, I didn't think they were any different from conversations we'd had off and on in the months before. I didn't see it as possibly being a first step towards surrender. I can't help but think maybe I could have done more, been a little more inviting to continued dialog in my reply, asked more questions, picked up the phone... And then I think I'm so arrogant to think I could have some how changed the course of events, avoided something so carefully planned that even her own family could not stop.

I think the stereotype is that people who commit suicide are a little bit selfish, because they don't think about the impact it has on those around them. I think that is a bunch of crap. M felt a kind of pain that most of us are fortunate enough to never experience--the pain of saying good-bye to a child. And instead of dulling with time (like it is "supposed to"), each day she woke to a feeling sharp as a knife freshly drawn along the wet-stone. M battled for three long years--to me that is bravery.

My thoughts and prayers are with M's husband, and I too hope she has finally found the peace that eluded her here on earth.

March for Babies 2008

It's that time of year again...

Time to put on those walking shoes (and pull out your checkbooks!) to support a cause near and dear to our family: March of Dimes

This is the third year Evan's CHARGErs will be participating in the walk (previously known as "WalkAmerica"). We have a pretty big fund-raising goal this year also--we want to raise an entire mile of dimes!

What does that mean? Well, we want to raise the dollar equivalent of the number of dimes laid end-to-end which would stretch one mile. It's $8939, in case you are curious.

How can you help? Online donations can be made at www.marchforbabies.org/skeybunny
We would also love to welcome additional fund-raising members to our team. It doesn't take much time or effort, and it supports a great cause.

Go Evan's CHARGErs!

It's March...Spring is coming

Today is sunny (but windy). We (meaning mommy) painted a rainbow and some shamrocks on the window to decorate for St. Patrick's day.

I'm not so interested mommy's art...


Hey mommy--where did these green shamrocks come from?


I found a four-leaf clover! (note what I'm holding onto...they must go everywhere)


Lucky me

Brown Coat

This was last Sunday...rainy and not so nice.