Archives for posts with tag: Sister

IMG-3938We were in my hometown over the weekend for Farmer’s Day.  We arrived Friday afternoon and made our way downtown to find my Dad.  I knew just where he would be he’s there every Farmer’s Day weekend.  My godparents were there and I loved seeing both of them.  We got supper at a local booth, watched some singing, Graham wrangled two carnival games out of us and won a small stuffed shark.  Then it was time to go back to my parent’s house.  One of the carnival workers stopped us as we were walking back and said he wanted to give something to Grace.  He proceeded to pull down from the booth a large pink unicorn with lots of sparkles.  It was perfect for Grace, I wondered how he could just look at her and know!  I asked if he was sure, not quite believing he would just give away such a large stuffed animal.  We held it in front of Grace, she totally checked it out, and we thanked him.  Graham volunteered to carry it back to my mom and dad’s house.  This from a boy who 30 seconds earlier was complaining he was too tired to make the walk.

As we walked Kevin and Grace got further and further ahead of us.  I considered asking a question all while knowing I would be wandering into potentially dangerous territory but Graham had been oohing and ahhing over the unicorn.  He had made no comparison to the much smaller and very plain in comparison shark he’d had to work to win.  I wondered why.

“Why do you think that man gave the unicorn to Grace?” I asked.

“Because she’s in a wheelchair.” He said simply.

“Is that the only reason? I asked prodding further.

“She can’t play the games Mom.” End of conversation.

He started talking about other things. But then a few minutes later said, “That was really nice of that man to give this unicorn to Grace.” He carried the unicorn happily all the way. He’d just taken it all in stride.

The next day he was not near as generous with his sister. I was doing something with her and he wanted me to be with him. Now that he’s learned to write he began to write me notes and pass them to me as I fed Grace. One read “Stop Now.” The other just read “No”. Not being able to leave her – because sometimes I just can’t leave her – and him needing or wanting attention from me that I can’t give makes me feel the heavy weight of mom guilt like few other things.

Later that day there was a point when I had to bow out of the fun because Grace needed some time out of her chair, air conditioning, and rest. Graham had a choice at this point. He could either come with me and Grace or he could stay downtown riding rides with his aunt, uncle, and cousins.  I was not surprised in the least when he chose them.  Although I knew he’d be fine part of me hated to leave him, hated to miss him experiencing Farmer’s Day and his cousins, and part of me felt guilty because he’s my responsibility. Watching Graham with his cousins, the banter, the love, even the arguing is sad in a way and fills me with a regret that he doesn’t have typical siblings but I also love to see him join in the fray and I’m so grateful for how my brother’s family embraces him.

There’s a part of me that hates that this is his reality.  It’s not always people giving us pink unicorns.  There aren’t always cousins to ease that we are choosing her over him.  But it is our reality.  We all make sacrifices.  I can only hope that he knows how much he is loved and continue to embrace the pink unicorn moments.  And for those times when he feels he’s being overlooked, I have to hope he can see that in a family you can’t always be first but by no means does that mean you are unloved.




grace and grahamGrace and Graham continue to grow in their relationship. I haven’t written about it for awhile- and it’s important. Here’s my current take on it.

Let’s start with the rough part. I’ve been getting frustrated because Graham has been making a big deal about Grace’s drool. He doesn’t want it anywhere near him. It’s frustrating because I struggle with knowing the best way to help him with it. Part of me gets this – we don’t call it “goo” without a good reason. The other part of me long ago accepted that there will be goo in our life. We give her medication to lessen it actually but for it to go away probably isn’t an achievable goal. He doesn’t have that perspective of course- he’s four.

The goo is a real challenge. When I’m with her and other kids I’m constantly making sure that she doesn’t goo them. I was reminded not too long ago about a time when I failed to get the job done. Grace and her princess friend from kindergarten were in the back seat of our van. We’d taken them to Wesley Woods to ride horses together. It was really wonderful. Grace’s princess friend had a jacket on. Grace had been chewing on her hand and reached out to touch her friend. When I said “Oh I’m sorry she got you wet” the little girl looked at me and said so matter-of-factly “That’s ok, it will wash.” That little girl had touched my heart several times that year – and this moment just got added to the list.   She did move a little to get out of Grace’s range but not so much that she was totally detached from her.

Graham says “she’s touching me”, “why won’t Grace leave me alone”, or picks something up and says “eww, Grace had this, dry it off .”

The first two feel like normal sibling statements – the last one, that’s about Grace.

One day this spring he wanted a megaphone to take to baseball. Kevin fashioned him one out of paper. I was Grace’s buddy that day at baseball. As we came up to hit the little boy’s voice that I love came yelling through that paper megaphone. “You can do it Gracie” and I missed the rest of the encouragement because what I really wanted to do was sit down and cry but what I had to do was hit the ball and get Grace around the bases.

When we bring Grace with us to pick him up from daycare we are typically surrounded by kids. Often with questions like “Why can’t she talk?” “Is she a baby?” and I see him take all our answers in. I hear him repeat them to others.

At our last visit with Grace’s immunologist he asked us about Graham. He reminded us that Graham too needs our attention, and that the older Graham gets the more he will understand about how our family is different. I teared up as we talked about it. I read a book about siblings of kids with special needs while I was pregnant with Graham. The take away I got was that we were putting Graham in a pretty tough position. He’s the youngest, he’ll have no siblings to commiserate with, and we’ll make only child and first child mistakes with him – without him having the benefit of being only or first. It made me worry. I think of it often. I want him to love our family when he looks back. We are taking it day by day. I can’t get too far ahead of where we are.

As for where we are he pushes her in her wheelchair. He asks to go on a bike ride with her. He wants to go swinging outside with her. He introduces her to others – sometimes yelling out his own and her introduction at people as they are walking by our house.

He’s quick at a restaurant to move a chair away from a table so there will be a place for her wheelchair. He offers to share his Cheetos with her. He doesn’t share them with his dad or me.

He’s quick to accept a piece of candy offered to her on her behalf. 🙂

He’s getting strong enough to open doors so that we can push her through them.

When we were at a family camp last week he quickly adopted Grace’s buddy as his own and when the three of them were together he would often attend to Grace bringing her toys that she likes so she could play too.

And if imitation is really the sincerest form of flattery – his participation in a dance recital this weekend – because he wanted to dance like his sister – speaks volumes.





Graham doing his part to help Grace dance

“Gracie walk” he said as he took her hand- and they took a few steps together before she started to trip.  Graham did this.  Graham, our not quite two, continually amazing us, little boy.  I just loved them both so much in that brief moment…it was kind of a normal moment (if you don’t think about it too hard 🙂 )

It’s not the first time he’s included Grace, or tried to help her.  He often tries to share his snacks with her.  He tries to get her to play catch with us, saying “Gracie ball” and tossing it her way.  Often she has no idea it’s coming.   It doesn’t stop him from throwing it to her again.

In the church nursery before we are even there to pick them up Graham gathers up his coat, her coat, and the diaper bag.  He’s not leaving without her.

When we first got the swing set this summer there was a night that he was insisting we go outside and swing.  Kevin wasn’t home yet – it was just the three of us.  I put Grace on a blanket in the yard to watch and went to buckle him in.  “No Gracie” he kept saying and refused to be buckled in.  I put him down and he ran to Grace in the grass, pulled her by the arm and said “Gracie swing”.  I tried to explain to him that they couldn’t both swing, (Grace didn’t have her own swing yet.  She could only swing with me on the porch swing that’s also a part of the swing set.  I couldn’t leave her on the porch swing alone to push him- there’s no way to make sure she’d stay there…not that he could understand any of that.)   He just kept pulling on her arm repeating “Gracie swing”.  Luckily Kevin arrived home, everyone could swing, and Graham was happy.

He claps for her at baseball.

He pounds on the window at dance yelling “Gracie, Gracie” trying to get her attention.

He likes to help when she’s getting meds in the morning.  She’s sleeping and he’s a happy (and loud) morning person.  “Shh, shh” we say and put our fingers to our lips as we go in the room- and then he sees her and says out loud “Gracie!”

It’s a treat to sit in her wheelchair.

You should see it when he hugs her good night – so precious!  He lays his cheek on top of her helmet, his little arm on her back.

We have to be careful though, one night Grace had a seizure (a pretty hard one) and Kevin and I both jumped up to get to her.  Graham began to cry, his little face just fell, “Gracie” he cried…and in that one word were so many questions… Is she ok?  Why did you jump up?  Am I ok?  Are we still ok? Why am I scared?  I picked him up, dried the tears and told him she was ok, he was ok, and we were going to be ok.

Grace for her part acknowledges Graham.  They fight for toys – and a lot of times want the same thing.  She chews on Graham’s Elmo’s doll.  She also reaches for him.  Pats him.  Sits next to him.  And she endures the hugs quite willingly.

It really feels like there is something between them I can’t capture in words.  I know it won’t always be exactly like this, so I knew I had to try.

He has already surpassed her in so many ways – but I still hope he gets to be the little brother – and she gets to be the big sister – at least a little while longer.

And because I haven’t said it in awhile I just feel the need to say again, “normal” development is amazing and its amazing-ness just continues to astound me.