Archives for posts with tag: celebrating

2B692091-A0AD-4844-AFD3-6755D0873689Summer has officially begun. Grace and Graham were done with school last Wednesday. I’ve unpacked a lot of the school stuff. Communication book, drumsticks, catheters, formula, diapers and unused pencils for Grace. For Graham a video showing kindergarten highlights, and so much of evidence of all he learned over the last year. We puzzled through some of the spellings in his work and marveled at his drawings, letters, and numbers. He learned so much in kindergarten!

I’d say their only year together in the same school turned out to be a success. Both of Grace’s teachers mentioned that Graham frequently sought them out to say hello. On the day he used his dragon tracks to be principal for a half a day he came home and reported to us that he’d been able to choose some classrooms to go to with the principal. He went to his own kindergarten room, but he also asked to go to Grace’s general ed room. When Grace wasn’t in that room the principal took him to the special ed room. And when she wasn’t there they went to the band room where Grace’s class was hanging out because the air conditioning in the special ed room was broken. I thought it was very cool that Graham used the opportunity to look for Grace.

For her part as a 5th grader, Grace got the chance to make afternoon deliveries to all classrooms. Evidently, they frequently peeked in on Graham.

There was one day this year when I dropped Grace off at school after therapy and was stopped by the school nurse asking for me to come to her office as soon as I had Grace settled. And then she winked at me. After another trip to the van to get the rest of Grace’s stuff and a kiss on her cheek goodbye, I reported to the nurse’s office to find Graham there. His stomach was hurting. But after a few hugs and a snuggle, he skipped off to kindergarten. I waited for the nurse to call me that day but she never did. He was fine. I was so grateful to have had the chance to be there for both of them that morning.

On Wednesday I attended the end of the year assembly. After songs to make me cry the siblings of 5th graders were offered a chance to line up in the middle of the gym. I saw Graham’s kindergarten teacher help him get into place. Once everyone was lined up the fifth graders “left the building” through a tunnel of high fives. This is what I’ve come to understand is the 5th grade clap out. Grace went second. It all happened so fast I got zero pictures. Graham told me later he got tons of high fives but none from Grace or her nurse Garrett. He was a little sad about it –but glad he got to be right up front.

As I left the gym after her in a hurry I walked by and made eye contact with Grace’s third-grade teacher and then her kindergarten teacher. Obviously tearful I only managed quick greetings–torn between getting to my girl and telling them one last time how much I was thankful for them I ended up following my girl.

And when I got to Grace her nurse and her aide were in hurry to get her water and get her cathed and get her to the park.   This huge moment was done. Life was going on. I walked out of the building crying and cried most of the way home. I swear a few trees cried with me as the wind blew and small leaves blew down around me.

Grace was done with the school she’d been at six years. “We have them the longest” her special ed teacher had said when we had Grace’s transition meeting to middle school. “It makes it harder to let them go” the speech therapist continued.

I’d been up to 11 the night before her last day trying to find words to thank so many people on Grace’s team the past six years. People who have loved her, cared for her, spoken for her, assured she wasn’t passed over. They’ve been with her literally half of her life. How do you thank people for that? And the thing is…the thing that makes me feel so helpless is that I imagine I only have an inkling of what she experienced there. That longing for communication, for knowing what it meant for Grace to be loved by them in what I’m sure were a million small and big ways escape me.   I’m sure that I’m not yet done processing what it means for Grace to be moving on from them. I’m sure there is more crying in my future on the topic.

But to bring this to an end I’d just say that on their last day of school in the same building I missed the opportunity to get a picture of them together. It didn’t work in the morning because they don’t get ready at the same time. After school Grace had a wheelchair appointment, Graham had taekwondo and that was that.

I’m so grateful they had their year- that they experienced sharing in this way this one time. I’m grateful for all the people who were in each of their stories their kindergarten and fifth-grade years.

And now we begin summer stories…

Joy

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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

S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy