Archives for the month of: October, 2016

img_4046Today Grace had surgery to lift her eyelids. They’ve been drooping, the right more than the left. Her brain and the muscles in her eyelids just weren’t working together. We were supposed to have the surgery done this summer, but if you’ve been reading along you know that this summer didn’t exactly go the way we planned.

We’d noticed almost two years ago that her eyes seemed a little more closed. We’ve been watching it with her eye doctor since then. We’ve watched her lift her head up less and less when she walks because she can’t see as well with her head up. We’ve watched her with her eye-gaze communication system. There are areas of the board she doesn’t look at as much, probably because she couldn’t lift her eyelids. We went through pictures from over the past few years with her ophthalmic plastic surgeon (still can’t believe she has a plastic surgeon on her team) and the progression was clear. It was time to do something about it.

The surgery was pretty quick – all the pre-op and post-op was what took time.

When I talked to the surgeon when it was all over he warned me that she would look rough for a few days. He told me there would be swelling, possible black eyes, and bloody tears. The only thing we can do is give pain meds, try and put ice over her eyes (not Grace’s favorite by any stretch of the imagination), keep her from rubbing her eyes too much (also not Grace’s favorite), and carefully wipe the bloody tears away to keep everything clean.

As they were putting in the IV this morning to give her anesthesia Grace looked me right in the eye. I promised her this was it – the last surgery we have planned.

We need this to be it. We all do. Months have gone by with us barely noticing. Graham yelled at me tonight for leaving him again. We were gone for 25 hours – and he had an absolute blast without us. Once he got over being mad he told me all about it. He needs us to not leave him. Grace needs to be in school. We need to be at work. The world is only forgiving of absence to a point.

I get that in the grand scheme of things this has been a small window of time.  But this small window of time has beat us up a bit. Physically, emotionally, spiritually, we’ve taken some blows. How to recover isn’t quite as easy as ice and pain meds.

The nurse in pre-op today called Grace a tough cookie. I told her she had no idea how tough a cookie Grace is.  The nurse in post op commented on Grace’s shirt. The word “Awesome” is printed over and over. “That’s a big statement for someone who’s gone through as much as she has,” he said.

“She never quits,” I told him. “She just keeps going.”

In the coming weeks (and maybe months) we’ll do our best to find our family some rest and recovery, so we can keep up.

Grace’s face will remind me of the need for rest the next few days I’m sure. When I put her to bed tonight I noticed the beginnings of what looks to be a black eye and I wiped up the bloody tears as carefully as I could.

But when her face has healed – she will be able to look up.

Joy

 

 

Advertisements

img_0007Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear.   We like him – he’s been amazing to work with. It sounds like we’ve actually been lucky. Only the culture from the ER showed MRSA, the one from Tuesday showed plain old Staph, and from Wednesday on nothing showed up. We caught it early. The seizure on Monday morning that made her fingers start turning blue was a blessing in disguise.

The good news/bad news, depending on how you want to look at – is that the infectious disease doctor is the guy we call if this happens again. The chance is real it could happen again. Sigh.

I’ve been thinking a lot about the book The Velveteen Rabbit this week as we’ve gone through all of this. There’s this scene towards the end of the book where the stuffed rabbit is old and worn and another old and worn toy explains to the rabbit that this is what it means to be real. To be made real by love. He explains that to become real happens over a long time.

I have felt really old and worn out this week.   Incapable of keeping all my stuffing inside. I also recognize it’s because of love that I feel this way. I recounted almost every day of the last week to the nurses taking care of Grace in the hospital that she had a normal birth, that we didn’t know anything was different about her until she started having seizures at about 4 ½ months. That since then we’ve been taking care of her in whatever direction she’d gone. My love for her has had to grow and change as she’s evolved to incorporate advocacy, medical skills, disappointments, risk-taking, research, wonder, and this crazy optimism that comes with special needs parenting. It’s real. Our last few months have shown me over and over how real it is.

It’s not just the love for Grace that’s made me feel that way this week. Graham has struggled. I was the one to give him the news that Grace was back in the hospital. His little face was just so sad. He told me one night this week that he hoped to wake up with germs in the morning so that I could stay with him all day. Killer.

In the midst of all of this, we have had crazy real loving moments.  Grace was complaining one night I was at the hospital with her, I unzipped all the zippers on her bed and climbed in with her. She calmed down immediately – we stayed like that for a good 45 minutes – no one came in to poke her or take her blood pressure – and when I got out to get meds going she was better. I took Graham to VanDees for his last ice cream with eyes for the year. It was chilly that night, so we were the only people there. Three people waited to take our order.   Graham was super nervous to order on his own with all of them looking at him, and so he whispered his order in my ear. Graham whispering is an experience. He puts his mouth so close to your ear you can feel his lips moving on your ear. It’s hushed, fast, so hard to understand, and it tickles. I couldn’t help but grin as he gave me his order. Luckily I know his order. Chocolate and white ice cream (twist) with m&m’s and eyes. Every time.

In the story, once you are real the rabbit learns you can never go back. The same is true with parenting once you become a parent it’s just not the same.

Grace is free to go back to all activities. We are watching her for cues that she’s ready to re-engage. Ready for therapies, school, baseball, dance, church, etc. It’s not just her cues we are watching – we are also dealing with our own readiness to put her back in the world with such a dramatic demonstration of her vulnerability fresh in our minds. Today she’s played some and rested some so far.     She is moving in the right direction. When she’s ready we will let her go back – because we love her. We really do.

Joy