Archives for posts with tag: friends

86BA8EED-38DB-42A3-905C-85390F56C695When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves.   Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight.   Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways.   Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.






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

Camp YaGottaWannaLearn

I got the chance to go with Grace to one of her last days of first grade this week.  The nurse was sick and no one could cover- but after a quick scramble Kevin and I had Grace on the bus and off to school.

She had a seizure on the bus.

She kept going as I tried to wheel her into the school- trying to keep her arm from being caught in a door as it continued to jerk away from her body – a line of school professionals just watching me try to navigate the situation.  One of them joked about her not cooperating.  She just didn’t know she was seizing and I let that go.

That seizure ended.   A few minutes later another one started.  It ended.  And we were off for our day.  It was a special day – Day 2 of Camp GottaWannaLearn.    We were to spend the morning in the general ed setting rotating between the different activities.  “Have fun!” they told us as we left the special ed room.  I hoped we would – two clusters of seizures back to back left me a little anxious about how the day would go.  I wanted so badly for Grace to have fun at camp.

It was fun.  Different fun than for others I imagine.  For me it was awkward/fun.

First the awkward:    Where to put the wheelchair so it’d be out of the way? Having stilted conversation with the other mother in our group.  Trying to figure out when I could sneak away to change Grace’s diaper and get her a bolus of water.  Trying to fit her in a spot on the floor not meant for a 1st grader with leg braces (that make it hard to bend up small in criss-cross applesauce style) accompanied by her mom.  Leaving a few minutes earlier than everyone else so we’d be to the next thing on time.  Playing games that were not adapted to Grace.  Having a hard time keeping Grace’s place in line because Grace did not want to stay in line.  Holding her back because it felt like we’d be run over when switching activities.  Doing the craft project for her, helping the boy next to her, and trying to keep her from spilling beads everywhere all at the same time.

The fun:  One teacher immediately had an alternative for us.  Finger painting rather than painting with magnets above our heads.  Brilliant!    Grace loved that!  Kids complimented her on her painting.  Others wanted to work with her in small groups in another activity.   She enjoyed being around everyone and part of everything.  She paid attention to the ghost story.

I marveled at their abilities.  The abilities of “normal” first graders.  Math.  Humor.  Spontaneity.  Problem-solving.  Concentration.  Reading.

There was one point when we were lined up to play a game and Grace was paired with another girl.  She’d been in Grace’s kindergarten class.  The girls were supposed toshake hands and say “good luck” to each other before the game began.  I put out Grace’s hand – it was clean and dry- completely shakeable.  The little girl refused.  High-five?  I asked her.  She nodded.  I put up Grace’s hand.  She put her hand up – but did not touch Grace.  My heart hurt but I just kept going.  “you have to touch it” I teased gently and held Grace’s hand up again.  She did – with just a finger.  There was no “good job” shake at the end of the game.

We came back to the special ed room for lunch and meds – both a little exhausted.

We weren’t all back together yet and the 1st grade teacher wanted Grace for a class picture.  We got her put back together, and I got her down the hall where my heart again fell as I realized everyone else was wearing a camp shirt.  Grace had brought hers home the day earlier and no one had told me to send it back.  She was going to stick out- damn.  But the teacher had an extra shirt.  We put it on.  The teacher volunteered to stand by Grace and I took the picture.  Grace would not look anywhere near the camera- but she was in the picture, standing up, looking at the kids in her class!

Back in the special ed room I watched her answer questions about a book.  Work on big vs. little.  I held my breath as she walked all by herself – no one holding on from the special ed room to her 1st grade room.  It’s a long walk!  I was so proud I could have cried – but there was no break in the action for that.

Back in first grade we made a tent out of an easel and a sheet.  We read a book with a flashlight and a friend – wonderful!

And then we had guidance where we talked about careers.  The guidance counselor was telling the kids there will be more emphasis on careers each year as they grow older.  So I was forced to wonder – what career will Grace use as they progress?  What will they be told if they ask about Grace?  Will anyone ask us what career we want them to talk about for Grace?  Ugh.

Then there was music.  Grace was tired – she started to cry.  I got her out of her chair and sat on the floor – probably not on her assigned square – but I didn’t know what that was.  As we sang she calmed down.  She leaned in.  I was happy to be there to give her that rest and comfort.

It’s a lot that she does every day.

We were both pretty tired when we got home.  In fact in a lot of ways I’m still tired today.  It’s so emotional to be so surrounded with what could have been-and then to have to fight just to keep a place in line.  To recognize that it’s only going to get more complicated, and the divide wider and wider.

I tell myself I’m not going to worry about the girl who wouldn’t touch her.  Grace won’t win over everyone – no one does.  I’m going to be grateful for our princess friend and others who have found their way to seeing Grace and are happy to give her a high-five.  I’m going to be grateful for the chance to finger paint.  I’m going to be grateful that she is walking down a hall all by herself – and that she’s curious enough she’ll veer towards the bathroom just to check it out on the way.  I’m grateful that somehow there is an extra shirt and that the teacher thought of it without me having to say a word.

One day of first grade left.