Archives for posts with tag: drool

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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IMG_9306I was discouraged this morning as I drove through the rain to get to the hospital.  It was gray and gloomy and that’s how I felt.  This is overwhelming.   I asked myself how we are really supposed to do all of this –  work , be with Grace,  represent Grace, be with Graham, help each other with all the emotions that come with what we are going through, and do it all on little sleep.

Last night I was home with Graham.  We drove through a rainstorm on the way home.  We saw a beautiful rainbow as we approached home.  “Mom, it’s my first rainbow,” he told me.  I replied “yay” .  He said, “tell me congratulations.”  I did.

I loved that moment.   Kevin and I laughed about it later.  It was somehow just what I needed.

This morning there was no rainbow for me to see before I got to the hospital.

Today we got to give her a bed bath.  You can see her ribs.  Everyone is excited about this.  Her tummy is normal – no sign of the roundedness that brought us in here.

Tomorrow we will stop the tube that’s pulling food out of her stomach and if she does ok without it for 8 hours it will come out.

On Saturday we will give her Pedialyte.  While she hasn’t met the measure for any of this to happen (that they’ve been telling us she needs to meet) the surgeon reminded me of the art and science of medicine.  With Grace, she needs to use a little art.  Again what can’t be explained by science is Grace and that makes me feel a little better.

It’s also just been good to be with Grace today.  To see her furrow her eyebrows at people.  I saw her grab a toothbrush from a nurse so fast that the nurse was surprised by her strength.  A stuffed horse arrived today from a family – that horse has been drooled on, petted, and flung around a few times.   It’s tucked in next to her now.

It’s raining again outside.  She’s snuggled all on her side, even though I tried to position her differently – and for right now that’s enough.

Joy

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.

Joy

 

 

 

waiting for hayrackFall has been hectic – I’ve started several blog entries in the past few months. None of them have actually been developed fully. In an effort though to keep these pieces of our story in one place I’ve decided to upload some of what I’ve written this fall. It doesn’t flow from piece to piece – I’ve given you fair warning.

 

Dress up days

Today was mismatch day at school. It’s a really hard day for me, which I know sounds incredibly stupid, but there is very little that I can control about Grace. I try to always make sure that she looks put together, cared-for, loved. To purposely lay out a horrible outfit just kills me.

Yesterday was worse, the theme was to dress as what you want to be when you grow up. First off, I don’t even really like to think much about Grace grown up. When I do what I want for her is community, people who will appreciate her, love her. I want there to be music, dancing, painting, outside time, sensory activities, movement! Costuming that wish is difficult.

 

Smiling while being stared at

It’s been a little rough lately. It feels like everyone stares and not in a friendly way. At the pumpkin farm adults held their kids back from getting on the tractor ride before us, which is nice, but they seemed not happy about it. Graham not understanding that we were supposed to sit in the handicapped section of the wagon meant another family with a wiggly little one had to wait. A girl on the wagon who said she was 10, looked at Grace, looked at me, and said “special needs child?” “Yes” I responded, “Her name is Grace.” I wanted the label quickly replaced with a name.

The little boy in the row in front of us at church looked at Grace with what looked like fear. When Grace got too close (she wanted a bulletin) he backed away as far as he could in the confines of the rows.

“Stop looking at her like that!” I’ve wanted to yell. “Stop looking at us!

We are a family- we are doing this life too. I don’t stare at you, please stop staring at us!!

But instead I smile. If you are going to be stared at you might as well smile, and in as real a way as you can. If I can’t smile I put my head down.   It seems better to pretend you don’t see than to frown back.

 

Love means you wear drool on your shirt

I caught a glimpse of myself in the mirror – my ponytail was half pulled out, my shirt had a big drool strain, my eye make up was smudged, and I looked tired- a real mess. I’d walked around like this. Gone to get food downstairs before I’d hurried back to Grace. No one had even looked at me funny. Evidently a hospital is a safe place to walk around looking like a wreck. “Sheesh” I thought to myself – “I look the wreck people must imagine special needs parents are”. I try so hard to always seem like I’m pulled together. When I was a new special needs mom I look at those people and they gave me hope. But today, today I’d gotten Grace up, got her ready and the nurse and I had taken her to the hospital for an infusion. We’d waited almost 45 minutes to see a cancer doctor – because even though it’s not cancer we are dealing with we still have to follow protocol. A nurse tried and failed to insert an IV. We waited for the medication to come up. We got the IV in. We gave ibuprofen to make her comfortable. She had a shot of a different med in her leg. I made sure the infusion med was the right med and I had snuggled her in a chair, where she had drooled on my shoulder while she slept. I tried not to move so as not to disturb her. She slept through her blood pressure being taken – this was a huge thing because normally she hates it and the machine just squeezes her arm repeatedly. When she woke up and was settled with her nurse I went and got a sandwich. After I’d eaten I went to the bathroom to wash my hands and that is when I saw myself. I fixed my ponytail and make up as best I could after silently chewing myself out for looking that way. But then I told myself that I’d done what I needed to do to take care of Grace and that motherhood- any kind of motherhood- sometimes is so consuming that you don’t take time to see yourself. The drool I couldn’t do much about. I’d earned it I decided and I would not be ashamed. It meant my girl had been snuggled on me for an hour and a half. It meant I’d kept her comfortable. It is what it is and that day I was just wearing love on my shirt.

 

Epilepsy Awareness Month

Today I saw this on Facebook related to epilepsy awareness month – “You learn how long 30 seconds really is when you are watching your child have a seizure.”

It’s true. I hate having to watch Grace have a seizure. The sounds she makes. The way the seizures contort her body. I wish she wouldn’t hold her breath or put her hand in her mouth. I hate how quick they come on.

 

Dance

I was talking today with two people that I work with.   I don’t work with them everyday, they aren’t in the cube next to me, but they know me and always are checking in on our family. When I mentioned today that I was anxious about changes to Grace’s dance program they both jumped in without hesitation to talk about how the program could evolve and be funded. They’ve seen the pics of Grace. They know how much it means. I was so thankful today for their support, ideas, and quick passion that Grace and others have a place to dance.

Joy