Archives for posts with tag: Brother

IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

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“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

img_4711One of the things I think Graham sacrifices as Grace’s brother is playing outside in winter. As noted several times before about Grace on the blog – she hates cold, and a cold windy day makes her incredibly unhappy. She complains and gives us looks like we are torturing her. Nonverbal communication at its finest!

I’m in charge of picking up Graham on my way home from work, and often I will hear other parents say things like “grab your boots so we can play outside tonight”. We hardly ever grab Graham’s boots because I know the likelihood of him going outside to play is slim. I hate that for him. The reality is that often times it’s dark before Kevin gets home and I can’t keep half of me inside with Grace and half of me outside with Graham.

This winter Graham has bemoaned several times the lack of snow. But this week it snowed! The first night Graham wanted to play in the snow so badly. I offered for him to go outside by himself, but he didn’t want to do that. So, we brought snow inside and he played with it at the kitchen table. We’ve done this a lot over the years. He gets cups and plastic food from the play kitchen so he can mold the snow into shapes. He also keeps plenty of sticks and rocks in a drawer in his room so he can add some natural elements to his snow sculptures. It’s not an ideal situation but it works.

But this week we had the good fortune of snow and the days being longer. So the second night we had snow Kevin was with Grace inside and Graham and I went outside to play in the snow. We did the normal things… snow angels, snowball fights, made tracks in the snow, found some icicles, went down the slide covered in snow. When a neighbor yelled out a greeting to us Graham happily yelled out “We are playing in the snow!!!” We went inside with wet boots and gloves and icicles in a bowl so Graham could do some experiments with them.

The third day it was over 50 degrees. We have no more snow. We played just in time!

It’s not always a sacrifice- it’s just different.

Joy

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

 

 

Day Out With Thomas-1

Last weekend we took Grace and Graham to see Thomas the Tank Engine in Boone. As we pulled into the parking lot Graham jumped around in his car seat and said “I so excited!” It was so sweet. I love to see his excitement. It’s contagious.

There was a tent full of train tables. As I entered with Grace in her wheelchair one lady got up, took a look at us, and gently shifted a train table just enough so that Grace could get through. I smiled at her in thanks. We pulled off to the side of the tent and I fed Grace while Graham played and Kevin supervised Graham’s sharing of train cars. I got a few looks as I was sitting there feeding Grace. I got the “oh that’s sad” looks, the “I’m so glad that’s not me” looks the “you are in the way” looks and the “isn’t that sweet” looks.

That was the first stop.

We tried to teach Graham how to stick his head in those cut-outs (that in this case magically make you a train engineer). We met Sir Topham Hatt. We got our pictures taken with Thomas. You can tell that Grace was less than thrilled…in the pictures her head is way off to the side. She’s not even pretending to sit up and be excited. One of things we’d talked about while I’d been feeding her is that sometimes a big sister has to do things because her little brother wants to. Obviously that parenting lesson went well!

Then we got to ride the train. On the train a man was going around taking pictures. He took a picture of our family. He handed Kevin the slip with the number and we didn’t think more about it. Grace snuggled in at my side. Graham tried to hang his whole self out the train window and played color trivia with all of the various friends of Thomas …we have a lot of friends to learn!

As we were about to finish a woman approached us and asked if we were going to buy our family picture. We responded we didn’t know if we would and she said that she would like to–That they try to do something every day. She said she imagined that we don’t have many pictures of the four of us, because usually someone has to take the picture. (She was right- but there is something uncomfortable about taking help..so we half –heartedly agreed). Then we got off the train and Kevin and Graham headed off to ride the trolley while Grace and I set off to retrieve her wheelchair and get her some meds. The woman approached me said “I really want to do this…it was so good that you could be here today.” She handed me the cash for the picture apologizing that she was $1 short. I thanked her.   I was putting Grace into her chair a few minutes later when she brought me the last $1. “I really want to do the whole thing” she told me. I thanked her again.

We got the family picture before we left. Our day out with Thomas forever recorded for us to remember.  We are doing life as a family, one child in the special needs world, one child out – it was a wonderful gift for that woman to acknowledge our family in such a kind way.