The Question

It happened, and I know it will only be the first of countless times.

Yesterday Harper's school had their annual 1st Grade Patriotic Program. It was so sweet. They sung songs and saluted the veteran relatives and friends of the families in attendance. Norah and I were especially excited to see that their Pledge of Allegiance song was accompanied by signs. (Not true ASL of course, but they were fairly accurate ASL signs using the frozen text of the pledge). I was such a proud mom to see my sweet boy on stage, knowing every word and giving me the occasional sly smiles and sign for I Love You. I also happened to sit next to someone that grew up in Jeff's neighborhood. It didn't take long into our conversation when she realized that she knew Norah's story. The kid's a celebrity, I tell you.

After the event, Norah and I joined Harper's class for some treats and a little social hour. Most everyone left, but Harper lingered with his friends while he also packed up his things to go home. One of his friends had been looking at Norah and I. He asked a few other kids if I was his mom. He finally asked Harper, to which he replied "Yes, that's my mom and my cute little sister." His friend quickly asked the question he was itching to ask someone, "What happened to your sister?" There it was. The first of many times, in just one of many forms that Harper will be asked about Norah's differences. In that moment, I was so proud of my son. He didn't understand what his friend wanted to know. Nothing happened to her. Nothing was wrong with her. He just knows that she is his cute sister. Harper's expression prompted the boy to repeat his question, this time pointing to his own neck. I could see Harper's brain scanning all of the things we've told him about Norah to help him understand that all people are different, and that the only things that make us "normal" are in fact, our differences. He told his friend that Norah needs help breathing with a mask. I of course didn't want to intervene. The boy wasn't quite satisfied, because he wanted to know what on earth was that gigantic white and blue thing around her neck. They ended up being distracted by another boy running around the classroom with a small flag, playing "good Army/bad Army".

There will always be something. There will always be stares and questions. There will be curious people, rude people, awful people, and wonderful people. My top goal aside from my kids' safety, health, and happiness is raising them to be confident in who they are, and I know much of that comes from example. I want us to be proud of one another. Our Deaf Mentor and I recently had a conversation about this - particularly regarding acceptance in being Deaf. She has told me before that watching Harper makes her proud, and that it is priceless to have a sibling who is so supportive of who you are. I don't know what the future holds, but I do have every confidence that this sort of support is going to go both ways. I like to think that Norah will be just as protective of Harper as he is of her. 

Preschool Plans

Sometimes I can be pretty cavalier about things. The truth is that I'm not always so confident. Of course I knew that Norah would some day get off of the vent and decannulate. There was never a doubt in my mind. I don't really have a whole lot of doubts when it comes to Norah and what she can and will do. I guess my doubt is sometimes in my own ability to facilitate some of those triumphs. I also have doubts in my ability to cope with everything with a smile. Sometimes I'm not sure if my smile is genuine. I absolutely love my life. It is beautiful and wonderful, and I wouldn't trade it for any other life. I have found fulfillment in ways I never could have imagined. But sometimes when I look ahead, it all seems so daunting. Yes, we've gotten this far - and what a challenging journey it has been. Again, I don't ever doubt that we'll meet our goals. I suppose, like most people, I just get a little tired.

Though she is a very smart girl (sometimes too smart for her own good), Norah is pretty behind developmentally. She turns three in a few weeks but she has yet to walk, stand, or even get to a sitting position on her own (though she's close). She is improving, but her expressive communication is lacking too. We recently made the decision to enroll Norah into preschool at the Jean Massieu School of the Deaf in Salt Lake City. Norah is hard of hearing. Though we have a Deaf Mentor (one of the most awesome people) who comes weekly to teach us American Sign Language, Norah will need even more exposure to ASL if we hope for her to be fluent. As for us, we're working on our fluency too. I truly believe that at JMS, Norah will be a "normal kid". I picture her at a typical school. She tires quickly, so would be lying down a lot. She would have minimal communication with the other kids. They would treat her like a baby, running figurative (and possibly literal) circles around her. She is not a baby, and I remind people of that often. At JMS, she'll be just any other kid there. Those kids are so accustomed to "different" that different = normal. She'll be ready to join Harper at our local elementary school someday, but that isn't just yet. Next month we have another appointment at Shriners to see how her scoliosis and c-spine (neck) stability are coming along. Cross your fingers for us, because her safety at school will be directly related to her neck stability.

Norah's formal list of goals on file is a long one. Will it be hard? Yes. Will we get there? Yes. Heck, I'm just thankful that we are facing these educational decisions and goals. It wasn't too long ago that we were facing different sorts of decisions - those that were necessary for her very survival. It's a welcome change of pace to be thinking about education and development instead of breathing and surviving.

Someone I Love

I recently read a lovely poem on a friend's blog that I felt compelled to share.


Poem by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

A Beautiful Language

Norah is feeling so much better these days. She is more herself than she's been in several weeks. She's perky, playful, and is finally back to doing four-hour sessions on the home ventilator, twice each day. We've decided that a fair goal is to do everything we can to try to get her home before she turns two years old. Babies should get to come home before they are two years old, right? Well, I suppose that she isn't a baby anymore. She is very much a toddler (though she doesn't "toddle").

We're really grateful for many technologies that help our lives, including Norah's hearing aids. We just have to get better at putting them in consistently (us and her healthcare team included). Norah's hearing loss is moderate, which is simulated here if you're interested in getting an idea of what her world may sound like. Set your speaker volume by playing the "Normal" sample then adjusting as necessary. Then you can play the "Moderate" sample to see what various sounds are like for Norah without her hearing aids. Some of them make me a little sad, especially the music and nature sounds.

Like all parents, we want to give Norah everything that can possibly help her. Since she has been unable to speak with her trach (we've tried speaking valves to no avail), and has this hearing loss, we're learning sign language. She may decide to use it later in life, or she may choose to drop it. Either way, we want to give her every opportunity to learn and develop. To see if we were interested in their services, we were visited by a mentor from the Deaf Mentor program through the Utah School for the Deaf and Blind (USDB). Norah was nothing short of enthralled. She was enthusiastic about the deaf mentor, and even "babbled" by waving her hands around intentionally to simulate signing. Norah let us know that she NEEDED this. So we signed up, and should hopefully start soon. We'll be visited by a mentor once a week for three years... and it's a free service!

Norah's hearing loss is caused by her skeletal dysplasia. I could go into further science-y detail, but I won't bore you. I tend to geek out with this sort of thing. I'll give you the simple version, and just say that her hearing loss is permanent. So we're learning American Sign Language (ASL) from books, our USDB coordinator, speech therapist, my new favorite website Lifeprint, and soon we can add our deaf mentor to the list. We're really excited to learn this beautiful language, and Norah is too! Some of the ASL signs she has done are: eat (her first sign long ago), thank you, more, all done, bath, mama, dada, want, play, as well as her own version ("home sign") of "leave me alone". I have been teaching Harper how to say "Dad crazy". Hopefully Harper will have fun with it, too.

I hope you are all doing well during this exceptionally cold January (I heard that in Utah it's the third-coldest on January on record). My intention is to be back to blogging more frequently, but we'll see!