Archives for posts with tag: love

12262Grace turned 12 last weekend.


I can’t fathom how time has moved both that fast and that slow.

Grace’s birthday usually finds me a little down. It is hard to celebrate what is while also very aware of what could have been. One of her presents was a very large Sofia the First balloon. I walked out of the store feeling half excited because I knew she’d love it and half sad because her likes aren’t more age appropriate. Having said that I also feel like I should state for the record my sadness doesn’t take anything away from my love for Grace. My love for her is big, life-changing and powerful.

We took Grace to see Stomp for her birthday. She loved it. I did too. There was so much energy on the stage. So much non-verbal communication flowing between the performers and out to the audience. They did it all using objects that were not made to be musical. (Plastic Target sacks and newspapers became musical instruments at times.)

There was a point in the show when all the performers were standing in a line across the front of the stage using only lighters (clicks and flames) to deliver that section of the performance. All the lights were out- it was pitch black. Accompanying Grace in her wheelchair we were in the very front row so we could see the concentration on the performers’ faces as they clicked and burned their way through the piece. It was phenomenal to see. Being able to see it added something to the performance for me.   The look of their combined work was very precise. Small lights in a large dark room danced across the stage. The concentration on each of their faces showed their determination to make it happen.   With all that focus they made it look effortless. It seemed shorter in length than some of the other pieces but I think it was my favorite piece.

It was understated but effective.

It was potentially easy to overlook as a person relives the show because it wasn’t loud or high energy.

It was a little dangerous to learn I’m sure.

Mistakes could be easily seen by a large group of people. There was no way to hide them.

Each performer had to do the work to make it happen.

I think Grace is a bit understated but worthy. She’s easy to miss because she’s quiet and doesn’t show a lot of emotion. Loving her is dangerous in that all parenting takes courage, but special needs parenting perhaps takes a bit more daring. Parenting Grace takes place in front of a huge audience, there are many people who weigh in, many people to judge, many people to bless her, and many who help determine her future.   We are working to make sure all their input comes together and results in a growing and thriving Grace.   We are doing it all with the tools that we have. We are making our own music. Grace loves music. She can love Sofia the First and Stomp!

So here’s to her 12th year! It will be an adventure.



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.



Just two days ago Kevin and I were having a conversation in the living room. Talking about our day, what we needed to do, etc. Graham inserted himself into the middle of us and yelled “It’s my turn to talk!” We both stopped to listen to him (and giggled a bit if the truth be told).

Graham can be so loud and it gets our attention so quickly. Grace is so quiet. I’ve been thinking about how quiet she is a lot lately.

Me thinking about it started around Easter time. We went to a special needs Easter egg hunt and Grace and I did our thing while Graham and Kevin did some other things. Grace and I had done some activities and it was chilly and windy, and she was complaining to me. Grace complaining sounds a little bit like Chewbacca from Star Wars. I knelt down in front of her (she was in her wheelchair) to talk to her for a bit, the noises stopped as she listened to me. When Grace and I talk she leans down and rests her helmet on my head and with our faces close together we talk. As I was getting up from talking to her I caught sight of someone taking our picture and at first it irritated me. That was her and me time, not something for public consumption. But then I got to wondering, what does that look like to other people? Do they understand that Grace resting her head on mine is a sign of trust?

I watch her in feeding therapy as the therapist provides pressure to her cheeks and head and watch Grace bob and sway to try and get away from that touch and that pressure. (It’s important that we push her in this area so that she’s more agreeable to people helping her, with things like brushing her teeth and washing her face. As she gets older/stronger her dislike of this could make it harder to care for her. ) I know that she will lean that same cheek that she hates for the therapist to touch towards me so that I can give her a kiss.

That therapist is new to Grace’s team and has asked me how to know how Grace feels about her. I have assured her that I think Grace likes her and is willing to work with her. I know this because Grace makes direct eye contact with her.

I watched her the other morning with her nurse. He was sitting next to her and she couldn’t get a toy to work like she wanted. She put her hand on his and pulled it towards the toy. She trusted that he would help her.

Then one day in the van I was sitting in the back seat right next to her and I was complaining about something. Grace placed her hand on my knee as I was talking. It felt like she was telling me “it’s going to be ok mom”.

I see her accept bedtime hugs and mooches from Graham. I think she would pull away from anyone else who approached her that way.

I have seen her trying to catch the eyes of the people who help her dance. And when she does she just looks at them in this way that makes my heart so happy.

I see her lean into the woman who takes care of her in the church nursery.

We took her to get an ultrasound of her kidneys and she wouldn’t let go of my hand the whole time.

These are all such quiet signals of love and trust. They can easily be overlooked or undervalued.

Grace will never squeal in happiness to see someone. She will never throw her arms around someone and give them a huge hug.   She will never make herself the center of attention clowning-around. She rarely smiles. She giggles on occasion.   Most of the time she looks very solemn. Because she is so quiet I fear that she will be overlooked. I have purposely dressed her in the loudest (most colorful) outfits I can find wanting to make sure that she won’t be missed. I don’t feel the need to do this as much as I used to- but I still have a few loud outfits on hand.

Because her reaching out, and enjoying something is so quiet I see people become discouraged in their interactions with her. It takes energy and dedication to be enthusiastic with someone whom you think doesn’t return your enthusiasm.

I’ve even thought about my time at Exceptional Person’s Camp. (I volunteered as a buddy for mentally and physically handicapped adults for a week or two most summers from the time I was in junior high until I had Grace…a long time.) Each session there was a talent show – with rowdy clapping and yelling of enthusiasm for talent that the regular world probably wouldn’t deem talent. One camper – I have no idea his name, had been quiet almost all week. I was surprised that he got up to be in the talent show. His buddy held a microphone to his wrist, he hit a button on his watch (a Mickey Mouse watch) and “It’s a Small World” played through the microphone. He didn’t smile, he was matter of fact, but we all cheered and screamed like we were at a major rock concert.

I’ve decided that it’s my job to metaphorically make sure that Grace has a watch that plays music. She too has something to offer, and though it may be quiet, and though people who are in a hurry will miss it, she has every right to that microphone, a buddy to help hold it, and the cheering.



I was listening to my ipod today in shuffle mode. Ben Folds’ “Gracie” came on.

It’s a song about his daughter..her growing up.

It was the end that really got me – he sings

“there will always be a part of me, nobody else is ever going to see but you and me, my little girl, my Gracie girl”

I got to wondering what part it is of me that my Gracie sees when the two of us are alone.

Sometimes it’s my frustration that I’ve been peed on- again.

Sometimes it’s kisses on her cheek.

Sometimes it’s tears.

Sometimes it’s singing in her ear.

Sometimes it’s a prayer.

Sometimes it’s me telling her it’s going to be ok.

Sometimes it’s me saying “ I got you, I got you, I got you” as we wait for a seizure to pass.

Sometimes it’s me begging her to cooperate.

Sometimes it’s me telling her how much I love her.

Sometimes it’s just quiet- a snuggle- the longness of her body somehow still fitting into the shortness of mine.

Sometimes it’s me telling her “I’m almost done- I promise” as I comb her hair or brush her teeth.

Sometimes it’s me asleep beside her.

My Gracie has seen me:

Desperate and sad.

Brave and confident.

Madder than I ever knew I could get.





Laugh with pride.

Experience wonder.

Experience grief.

Embrace quiet.

Experience love.

Experience doubt.

Try, and try, and try again.

I value very much that part of me that Gracie sees that no one else does. My thanks to Ben Folds for pointing it out.