santa baby

brave little girl

Elisabeth was born with Goldenhar Syndrome, which in her has manifested in many ways but primarily ear/hearing, spinal, and eye deformities.  I don't often talk about it because, really, she's doing fine.  Her case is relatively mild, and there are many children who deal with far worse medical issues.  Nevertheless, it is part of our story.

We have known that Lis would have surgery on her eye since she was an infant.  Her doctors advised us to wait until she was older, and we felt that with her starting kindergarten, this was a good time.  This was her third major surgery, and umteenth time under general anesthesia, but it doesn't get any easier for me.  It's a hard thing to put your child's life in someone else's hands.  Hard to trust that a stranger cares as much about her safety as you do.

As I watched her go bravely down the hall, riding in that red wagon and holding tight to her "Beary," I was overcome with the amount of love I have for this child.  With how proud I am of her bravery and of her trust in us, her parents.  All we had to tell her was that she would be okay, that these doctors would take good care of her, and that we would be waiting RIGHT HERE and would be with her when she woke up.  And she said okay.  She didn't even look back as she rode away.

Elisabeth's trial is her own.  I have learned that.  Yes it takes some effort and patience and organization on my part to make sure she sees the doctors and gets good care, to make multiple drives to SLC, to make sure she keeps her glasses on, to push her to wear her eye patch, to help her see that she is beautiful despite her differences.  But she is the one who lives with it.  This really hit home to me when I went in to be with her as she woke from surgery.   She was laying on her back, her bear by her side.  Cords and equipment all around her.  Her long hair gently framed her face and she was beautiful.  Her right eye was covered over, while her left one fluttered awake.  I held her hand and watched as she wiggled around to get comfortable and as she told the nurse what she needed.  She was so at ease taking charge of her own needs, and so familiar with the setting.  I felt such a sense of resignation from her.  No, not resignation, because that implies a sadness, but maybe acceptance and determination.  With a pinch of stubbornness.  This child of mine has always been stubborn and independent, but in that moment I was so grateful that she has been blessed with those traits.

At this time of counting blessings and Giving Thanks, I am profoundly grateful to the wonderful doctors at Primary Children's.  We have always been so blessed to live where we have access to the best doctors for the particular challenges Lissie has.  We were blessed to have been in Ithaca when she was born, at the same time that a certain doctor relocated there and was doing rounds that day, the only doctor in the hospital--indeed the whole of Upstate New York--who recognized and was able to diagnose her syndrome.  We were blessed to have lived in Maryland where Lissie could see Dr. Blakemore at Children's in DC, who is one of the top experts in the country in pediatric congenital spinal deformities and did such a masterful spinal fusion on Lis when she was not yet two.   And we're blessed now to have access to the amazing doctors and staff at the Moran Eye Center and Primary Children's.

I am also profoundly grateful for the organ donor who made it possible for Lissie to receive a cornea transplant.  For the donor who made it possible for Lissie to receive a bone graft when she had her spinal fusion surgery.  Unless you are in a similar situation, you don't often think about the realities of organ donation--except to either check it or not on your driver license, but because of their selflessness, this little five year-old girl's life will be forever blessed. What an amazing gift. 

Beary got a matching ID tag

the TV was far more interesting than my conversation

I think here she is thinking, "quit taking my picture already and get me a popsicle.  grape."

the "after" picture -- and Lissie just informed me that "I do look good."

johnny is one

It was a crazy October around here, but I finally got Johnny's first year pictures done.  What a little heartbreaker!  I hope to have time in the next couple of days to post about the rest of our month:  Caleb turning eight and getting baptized, Lissie's surgery, multiple Halloween activities, Ben turning six months old, a visit from Emily and Johnny, and lots of fall fun.  

  

i heart provo

I will say this about my husband's insistence on football season tickets:  it gives me a chance to play in Provo in the fall.  I heart Provo in the fall.  This past weekend we stayed overnight, since the game was a late Friday one, and went up Provo canyon in the morning.  It was a bit chilly, but still lovely.  Ten years ago, had you been on the same path, you would have seen us racing by on rollerblades, and now here we are, huffing along with a stroller and four children in tow.  My oh my.  


And yes, there are a disproportionate number of Anna pictures.  She generally doesn't stray far from me, unlike the older two, so she's an easy subject.  That, and she liked modelling in her gold shoes.  Gold shoes and gold leaves.  Doesn't get much better.

tim tam

I'm not too proud to admit that sometimes I'm kind of dorky.  My sister is especially good at bringing it out.  When I was down in Bountiful yestertime [that's my son's word for anytime in the past], she and I enjoyed some Australian cookies in honor of John.  And yes, it was silly.  I don't want to repost it, so I'll send you over to her blog for the embarrassing pictures and commentary.

on location

Some days I am suddenly struck with how quickly my children are growing. Not only when we have to buy new shoes or get out the next size of clothes, but when I notice the small things they're learning, or the milestones they hit. Some days I wish I could put aside all the homework and housework and just sit and watch my babies. I think this is one reason photography appeals to me: I can pay attention to the details and then have something to show for it.

Ben is definitely growing. Just yesterday I realized that he is almost crawling (though he hasn't figured out how to work in the arms just yet, he sure can get from one place to another awfully quickly), and I hadn't taken any video or pictures of it. The horror! So I did. And then his wiggle was so so cute that we needed to go on location to the backyard for some pictures.

I was hoping he'd do a little crawling for me, but he was tired so he mostly just sat. He really only smiled once or twice, and I think he got a blade of grass stuck in his mouth because he spent a great deal of time being preoccupied with his tongue. So, this is Ben being grumpy. But the best part of Ben, is that you can't even tell.

another year

Last Monday was the first day of school and our house was all a-buzz with anxious activity the night before. Caleb has been counting down the days 'til he would see his friends on a regular basis again [there is an unfortunate lack of boys in our neighborhood] and Lissie couldn't wait to be in kindergarten. Outfits were decided, backpacks stood ready, and a little sleep was had. It was a bit rainy in the morning, but we walked anyway, and said goodbye to Caleb first. Lissie has afternoon kindergarten, and those next few hours of waiting were torturous, to say the least. But finally it was her turn. I helped her get familiar with her classroom and with the teacher, the location of the bathroom, where to hang her backpack and where to sit. A classroom is exactly where she belongs and it's about time; she's a smart cookie, that one.

I returned to pick them up, and MAN did I get chewed out by Caleb!

"Mom, I walked all last year by myself, and I don't need you to show me how! I'm not walking with you...stay back there."

No, I did not let him get away with that talk, but yes I stayed back. It does make me happy to see him taking responsibility for Lissie, though. I love seeing them coming around the bend together after school, Caleb doing his best to stick right by her side. He is so thrilled to have his sister in the same school this year, and I'm so thrilled that my children are friends. I'm also secretly thrilled that Lissie is upset if I'm not outside waiting for them. She's not too grown-up yet.

So we made it through the first week, through back-to-school night [where I volunteered probably a little too liberally], and through the first holiday break. It makes me so happy to have the routine and order and cooler weather that accompanies the school year, and I'm looking forward to seeing the wonders and learning that this year will bring.