Archives for posts with tag: music

12262Grace turned 12 last weekend.

Twelve.

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.

Joy

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IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

IMG_3542Today was a big day for Grace. She is no longer connected to a pulse ox, ECG, and drum roll please…the NG-tube was removed! So many fewer tubes and wires to contend with all at different angles are a welcome change. She has also started a slow feed of Pedialyte (just 15ml/per hour) and we have been able to give Grace her regular anticonvulsant medications that are not available in an IV form. The resident that coordinated the medication plan with our Epileptologist, who happened to be on call today, knew Grace and her treatment plan without skipping a beat and the resident so impressed by that. We are quite privileged to have some excellent providers managing Grace’s care.

It will take some time to get her gut working again as we will eventually reintroduce her regular formula and work our way back up.

Grace’s regular Music Therapist came to visit Grace today.  And Grace was happy to use her favorite red tambourine. During music therapy, we had Grace in a wheelchair that leaned back to get her out of bed and a bit more vertical but yet not strain her. On her own, she sat up!  Her progress today has wowed the staff and there is a bit of disbelief that Grace has an active ‘baseline.’

Kevin

 

IMG_1969-ccI went out last weekend and tried Grace’s braces on a few pair of Converse sneakers to find the right size and then I sat down to fill out your form. I was touched that you wanted me to include her “support-site” so that an artist could get to know her better. The thought that someone would take the time to learn about her in order to paint her a pair of shoes to best match her is just incredible.

As I got to thinking about it though I realized Grace’s blog is a lot about the trials and tribulations of Grace – and most often our trying to figure out how to deal with the trials and tribulations of Grace. The blog won’t tell you some of the things about her that I celebrate.

First, let me mention her love of dance. You will read of dance, but what you won’t read is how Grace knows that it’s time for dance when we put on the leotard, skirt, and tights. She carries herself differently when all outfitted to dance. She loves sparkles on her dance outfits and will often flip sparkly skirts and tutus in her hand just to see the fabric move I think. She loves to look at herself in the mirror at dance and will often look herself straight in the eye, moving her head back and forth as if checking herself out.

To continue with the sparkle theme – Grace loves lights. She loves Christmas tree lights, and outdoor displays. She loves lights on toys. She watched the fireworks recently at 10 o’clock at night, tired as can be, but not able to look away from those lights in the sky.

Grace loves to be outside on a beautiful day. She enjoys the days where the sky is bright blue and white fluffy clouds are floating by. The days that aren’t too hot or aren’t too cold, or too windy, we put her in her swing outside (swinging is another love of hers).   On those days for as long as you’ll let her she’ll swing and never complain. She may even smile.

She loves flowers. If we happen to stop by flowers out and about she will eye those flowers and then quicker than you can imagine stick her hand out to grab them.

She loves aquariums. We take her to Minnesota for a lot of doctor’s appointments. After long days we make a point to take her to the aquarium at the Mall of America. There are so many beautiful fish there, and turtles, and we walk her to the tunnel where it seems the fish have surrounded you. She will stand in front of the fish and just watch them. Even after a hard day she’s just so content to be there. I think she’d stay there for hours if we’d let her- she doesn’t really look away and often times we find ourselves pulling at her to move on to the next thing. She loves to watch penguins swim too.

She loves music. Drums. Trumpets. Guitar. Singing. Toys that make music are her very favorite. Often times we arrive at church after the worship band has started playing and she will walk right towards the balcony to watch on our way to her classroom.

She loves finger painting. It’s an adventure, put a little paint on some paper in front of her and she will not only paint the paper, but the table, herself, her helmet, and you.

She loves the crinkle of paper – when given the chance she crinkles it all up just to hear the sound I think.

Her likes are pretty simple, but consistent. We continue to look for ways to expand on her interests and are moving into drawing apps, fish apps, and piano apps she can use on her ipad.

Finally, she loves shoes. We once got her a pair of Hello Kitty shoes with sequins and she just loved them. I put a new pair of sandals on her one night before a music concert for school and the teacher told me that Grace just kept looking at her shoes during the program. (They were pink with white polka dots). She even checks out other people’s shoes.

I am positive that she will love her Peach’s Neet Feet shoes, and we will be grateful that you have chosen to help us celebrate her in this way.

With much love,

Grace’s mom