SDCH Friends

I'm so proud of my son. Whenever we (or our roommates) have kids visit who don't often come to SDCH, you can see the difference in their behavior versus Harper's. No, I'm not talking about outward behavior like patience or manners, or the ability to sit still. I'm talking about something a little less noticeable.

You see, there is this sweet resident at SDCH who is pretty much the celebrity - just as Norah is in PCMC's PICU. We'll just call her "S". Like anyone else that spends a considerable amount of time there, we adore S. She is sweet, smiley, and silly. She's an amazing 7-year old that has been through so much... And I think she may have a little crush on Harper. He always wants to say hello to her, and she to him. She gets super excited to see him, and has on a few occasions, spotted him from the other end of the hall, and wheeled immediately over to greet him.

Here's my favorite part: when Harper looks at her, he doesn't see her wheelchair. He doesn't see the massive amount of equipment strapped to her chair that for sure weighs more than she does. He doesn't see any of her mental or physical challenges. He doesn't see her quirks and "isms" that are different from other kids. He only sees her. When she comes to our doorway to talk to us, I've seen the way other kids often look at her. They look her up and down, taking in every bit of her disability. And for those of you that may think I'm just referring to your children, I'm not. We've been there for quite awhile and have had a lot of young visitors. I'm referring to just about all of them (I suppose the adults do it too). I know with kids, their curiosity almost comes from an innocent and interested place. They haven't seen S before. They don't understand. This is not a criticism.

Rather, it is a compliment to my son. He has been so very exposed to these special needs kids, that he only sees people, not people with disabilities. A month or so ago, one of the residents that has been there pretty much his whole life wheeled past us in the hallway. He said "Hi, little boy" to Harper. Harper hid behind me. "He's scared of me," the resident said with an unoffended and understanding tone. "No, no," I assured him. "He's just the shyest kid you'll ever meet." And it's true. He wasn't scared of the way this resident looked. He was simply being shy as he always is.

I'm so proud of Harper and who he is becoming. He is a polite, sweet, caring boy, that sees people for who they are, not for what they can or can't do.

Hello, Springtime

This morning, I am sipping my coffee from my favorite place in our house: Norah's room. The Northern Utah snow has finally given way to warmer weather, and little signs of spring are here. Little birds are playing outside of Norah's window. If Norah were here with me, I would do my best to tell her what the birds sound like, since her naked ears wouldn't be able to hear them... And a current favorite activity of hers is dismantling her hearing aids.

Norah is the happiest kid I've ever known. She's content to play by herself. She laughs at her movies. She laughs at her goofy family. She plays silly games, makes funny faces, and knows how to artfully deliver sass with a playful smirk on her face that makes it impossible to be angry or annoyed. There has always been something about Norah that draws people in. She has a sort of intangible magnetic quality to her that most everyone feels immediately. She is intelligent, beautiful, and so very brave. How did we get to lucky to have this amazing girl as our daughter?

On Saturday, we went outside to soak up some sunshine. Norah was a little freaked out by the bright devil ball of light and the fierce 1mph breath-stealing breeze in her face, but we protected her from the elements. We were out there a good 45 minutes, and we all loved every moment of it.

Time to process some vitamin-D.

Norah gives her Uncle Jared the stink eye while
he and almost-Auntie Sarah read to her

Lately

My heart has been a bit heavy lately, which, I suppose is why I haven't been writing much. Sometimes I grow tired of my whining. I really don't want to throw a pity-party for myself. I really am trying to make the best of things. But sometimes it is just so difficult. Sometimes I just can't seem to pull myself up and out of this funk. Jeff, Harper, and Norah help, of course. They help me see and feel that things really will be okay. They remind me to not only look to the future for when we will all be together under one roof - but they remind me that living for today is important, too.

We are getting ready for Harper to start kindergarten in the fall. He didn't go to pre-school. He didn't really go to day care except for those few months when I returned to work from maternity leave then promptly quit my job. We've been getting him ready with "homework", as well as talking to him about what school is like and driving by it a couple times a week. Next week we'll be visiting for "kindergarten round-up". He has some pretty intense social anxieties, but I think he will be fine, so long as we continue to support him.

Norah is so fun lately. She's going through a mama's girl phase (shhh don't tell Jeff). When I reach my hands out for her, she gets the biggest smile on her face, and reaches towards me. Often times, when someone else is holding her, she reaches out for me and begins to cry her sad, silent cry. It's difficult to resist. When I hold her, she loves to wiggle down my lap until she's laying across my legs. It's her new favorite. She also loves to hang her head off my lap like a crazy girl. She is such a toddler, and I am loving every moment of it.

Our visits seem far too short lately. They're very fulfilling, but I always leave in want of more. I see sadness on her face when I leave. Now and then she cries. It breaks me. So I'm doing my best to live for today, but it isn't easy.

Feeling Sick

This post is coming to you from a quiet, cozy corner of Norah's hospital room at SDCH. She's had intermittent viral symptoms over the last week or so. Today her heart rate was up, and she had a fever in the neighborhood of 102F. Right as we (Jeff, Harper, and I) were leaving, she started bawling, then she threw up.

Without a word, I held up my keys to trade with Jeff. We are all too familiar with this routine of division. He took Harper home so I could stay here with Norah. She's sleeping soundly in my arms now, but felt so crummy that she was shaking earlier.

Here in this moment, it's hard not to dwell on wishing I were rocking her in her bedroom at home. How I'd love to snuggle her all night, and be right by her side anytime she needs something. But soon I will have to slip her back into the hospital crib. I will have to rearrange her tubes and wires. I will gently kiss her cheek as to not wake her. I will have to whisper goodbye in her ear, tell her I love her, and that I will be back tomorrow. I can hardly stand to wait for the day that she comes home. Someday... At least I can say that much.