Posts Tagged ‘children’

Being Known and Being Missed

IMG_5296As we entered the building, there were greetings and cheers.

“Hi, Chloe!”


“Yay! There’s Chloe!”

Everyone was happy to see her. And she ate it all up. She waved at her friends and her fans alike as we entered into the cheer gym for the first day of practice for a new season.

What a great feeling to enter a place and be greeted by name by friends who love you and have missed you.

I’m so glad that Chloe has that feeling of acceptance and friendship in several different settings. At school each morning, she’s greeted energetically by sweet friends. At church, folks are glad to see her and greet her by name. And at cheerleading each week, when she enters, the room erupts with excitement.

Chloe over the years has gained confidence and awareness and the mutual respect of greeting others (usually, anyway!). She will look their way or wave or say Hi.

Friendship. Relationships. Being known. Being appreciated. Being missed when you’re not there. Being loved. Being seen and noticed.

Yes, Chloe matters to people. And nearly as exciting: those people matter to Chloe. J



I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!

First Signs

I remember it happening with Elliot…those first signs.

They started suddenly and on their own. Nothing I asked for. And they increased over time, until they just became a way of life. The new norm.

It was welcomed when it happened with Elliot. Surprising, but pleasantly surprising.

Just one day he started helping me with stuff. Stuff that needed to be done. Without being asked. He started stepping up and being a young man helping his mom. Helping his mom take care of his brother and sister. Seeing something that needed doing and just doing it.

And this week, it happened with Zippy for the first time. Yep. I was moving our stuff from one vehicle to the other since my van was going to the shop. I made multiple trips back and forth carrying stuff. And then it happened.

Zippy opened the back of the van and lifted Chloe’s wheelchair out of the back, moving it to the other vehicle for me. Without being asked.

He had seen his mama working hard and realized there was more to be done. And then he took it on himself to do a big job for me. Amazing.

(I won’t mention here the amazing crashing and banging that came from the back of the van as the wheelchair banged in to the back of the van and then crashed onto the driveway and onto his big toe…)

He had seen something that needed to be done, and he did it. Without being asked.

So now it is happening with Zippy, too. He is growing up.

It sure makes a mama proud!


Those who know me know that I LOVE SUMMER!! I love my kids being on summer vacation from school. It is a wonderful time of long, fun, relaxed hours and days together that are really mostly stress-free. I love it! I count down the days til summer finally arrives, and then I laze around and play hard with my kids!

We just finished our first week of summer. It was actually an oddly busy week for me as I had a couple of trainings and meetings. Elliot had a Tech Ed Camp Monday through Thursday so he, too, was busy. Chloe started summer school reading class last week, too, so I was running back and forth taking her to class, taking Elliot to camp, picking Chloe up from class, picking Elliot up from camp … repeat. It was fairly crazy.

But this next week won’t be quite as crazy. Chloe still has reading class for a couple of hours everyday, and I do have a couple of more meetings, but it will be a little more summerish and normal.

Also, next week, we will start our summer limits on screen time and start our summer goals for the summer. This past week, Zippy had unlimited hours on the TV and with the PS3 and wii; he literally could be found in front of one of those screens at all hours of the day. But it was all part of the first week of summer celebration. Hopefully the reality and cruelty of this next week won’t be too much for him to handle. 😉

Our goals for the summer (dare I share them here for all to keep me accountable??) include the following:

  • Weekly library visits (getting cards for the kids, too)
  • Reading daily
  • Keeping rooms tidy (I can hardly type that with a straight face!!)
  • Chores (more on that later)
  • Math/Reading practice for Chloe and Zippy
  • Inviting friends over to play (hopefully every week to keep us from being hermits!)
  • Exercising
  • Getting outside
  • Practicing instruments

We’re starting tomorrow so wish us luck!

Would love to hear how you organize and challenge your children during the summer. I always am looking for ideas and inspiration and encouragement!

Happy Summer! 🙂 Here’s hoping for many laughs and memory making with my kids!!

The Joy

I bawled. I hung up from talking to the teacher and bawled.

She called tonight before dinner asking for a paper I was to sign. Even though I had signed it and sent it back today, the last day of school before summer break, she hadn’t seen it. While we talked, she realized where the paper probably was so she said to disregard her call.

Then she stopped. She said, “No. Don’t disregard my call. It gives me the chance to say thank you for my necklace — I wore it today.”

And then she went on to tell me how much Chloe means to her … how much Chloe has changed her … and what a tremendous blessing it has been to have her. “I love Chloe and will always love Chloe.”

She mentioned the note I wrote to her that I stuck in the bag with her necklace. It meant a lot to her; she took it to heart, which is good because I wrote it from my heart.

The phone call was a bit awkward and incredibly emotional (and those who know me know emotion is not my forte!). The words came awkwardly, if at all. I feel speechless and forever indebted for the care this woman has taken of my daughter this school year. I assured her that the note I wrote to her was indeed heart-felt and that I would never be able to express to her what this year has been for our family — for Chloe.

Hoping it’s not too personal to share, I’m choosing to share it here since this is where I share my heart most of all and really paints a picture of my family’s gratitude for the team that taught Chloe this year:

We have no words to express what this year has been for our family — especially for Chloe. To be valued, to be appreciated, to be loved, to be held to standard, to be included, to be listened to and taught … and all the while be healed from past hurts. Your heart for teaching and for my daughter is gold and healing balm for us. Thank you for an amazing year!

Yes, it’s from the heart. And truly understated, if you ask me.

She went on to say that there’s no way Chloe benefitted more than she did this year; the teacher said she was the one who was blessed. And she was so glad that Chloe landed in her room this year.

The end of the phone call with the teacher is what pushed me over the edge to tears and sobs. She said she didn’t know what our summer looked like, but that she would like to write letters to Chloe and hoped that they could be pen pals. She also said maybe she can come over or meet us at a restaurant and hang out while Chloe plays … “so that you can stay connected to teachers who care.”

And I said, “Yes!”

I said that I would like it very much.

And my heart is full. My heart is full and overflowing — overflowing all down my face and dripping onto my shirt.

The crazy thing? Just a few hours before, Chloe’s aide made pretty much the same offer. It’s as though they can’t imagine the whole summer going by without getting to hang out with my kid.

And I’m finally letting myself believe it. After an entire school year of my precious girl being valued and cared for, I’m finally letting it really sink in. It’s trying to sink in as the tears are welling up. My daughter is truly valued, sincerely liked, and genuinely missed by folks who love her at her school.

I will refrain from asking what planet I’m on!! It’s crazy, indeed. Crazy good!!

Stage Fright

Butterflies, cold feet, stage fright, nervous tummy — we’ve all experienced it. I have come to expect that sort of nervousness from Elliot before a big day or before a performance. He feels it, and he talks about how he’s getting nervous, etc. Zippy doesn’t really care that much to get very nervous — maybe he doesn’t even realize the potential of messing up on stage and doesn’t really care that people are watching him…, and Chloe has always seemed like it doesn’t really matter to her since in her viewpoint she’s the only person on the planet — and when you’re the only person on the planet, it doesn’t really matter that you are on stage.


Last night at Chloe’s cello recital, she experienced and expressed nervousness for the first time ever. And it was so severe that she was frozen in her steps!

I must say it was the funniest, most exciting thing I’ve watched in a long time. Stage fright is so amazingly typical for kids on recital night, and quite frankly, Chloe and I don’t have many typical experiences, especially when it comes to her emotions.

You will get the pleasure of watching the video below — just over 2 minutes of video of a girl scared stiff and refusing to hold her cello and her bow followed by her 6-second musical performance on which she did a fantastic job.

I am proud of the job she did! She pulled herself together for her recital piece. But it’s the 2 minutes before her piece that totally fascinate me. Had Paul started the video a couple of minutes earlier, you would have seen her less-than-speedy trip up the 3 stairs to the stage. Her nervous legs and feet were like lead refusing to move. I coaxed her up the first 2 steps, and then she just stopped– a frightened, frozen statue destined to a life forever stuck on the stairwell. The teacher came over and joined in the coaxing, “Just one more step, Chloe.”

She successfully, finally made it to the top of the stairs, both feet planted on the stage, and again she froze. Absolutely frozen stiff in her boots. Fear, anxiety, nerves almost visably wrapped around her skinny little legs, making it impossible for her to proceed a step further. When my coaxing and begging no longer worked, I gently lifted her little feet off the ground and scooted quickly and smoothly to the bench in the middle of the stage where I gently plopped her scared little body.

She sat, growling, with her arms wrapped tightly around the top of her head and refused to touch the dreaded cello which would play the dreaded beautiful music which would cause the audience to explode in dreaded uncontrolled applause. In the video, you will see the teacher and me working hard to convince Chloe to hold her cello and bow. You will see Chloe repeatedly wave Hello to the cello, to the bow, and to the piano, one time even greeting the bow that she’s wearing in her hair — bow, bow … see what she did there? You will see the very expensive and fragile cello nearly crash to the floor; you will see me finally, desperately tell the teacher to just go to the piano and start playing in hopes that Chloe will snap to it. Thankfully that plan worked. Chloe played her piece, jumped up for a bow, and even graced her patient audience with a second sitting bow. Success.

Sweet, entertaining success. I. Loved. It.

And Chloe survived (if just barely) her first solo recital.


Not My Deal, Really

This is not a new thought for me. In fact, the idea was first spoken to me when we still lived in Grand Rapids, MI so the kids would’ve had to have been younger than 3 and 2 years old. And I’m reminded of it now and then. I was recently reminded of it when I was belly-aching about how tough life is for ME.

Oh, brother.

Seriously. It was a day when things seemed especially difficult: I am still doing some of the things that all my friends stopped doing when their kids left the “baby stage;” I am having to carry all these supplies everywhere I go when others only have to remember to grab their kids; I am frustrated and sad that I couldn’t figure out what my daughter was trying to tell me. You get the picture. Just all of a sudden one day I was tired and frustrated and thought my life was so much worse than everyone else’s. I was mourning and fighting that I have such a load to carry. How could I carry on? Poor ME!!

And then I was reminded. This thing — this life, these disabilities, these hardships — are not unique and they aren’t mine. They aren’t mine.

When I remember that I’m just the one supporting my children with disability labels, I also remember that this whole deal is really their deal. They are the ones who really have to carry it. Chloe is the one who is stuck inside a body that doesn’t work like she wants it to work. Zippy is the one whose behaviors are so often out of his control, and then he’s stuck with the hurt that his actions have caused his loved ones. They are the ones who live everyday and every moment with their disability.

It puts it in perspective and helps me not get wrapped up and warped up into thinking it’s all about me and about being the mom of a child with disabilities. Ummmmm, no. It’s not about me. It’s about them, and it’s theirs.

Don’t get me wrong, parenting a child with disabilities is lots of work. It is work that takes over your life, mandates your every plan, highjacks every conversation, and monopolizes nearly every thought. True.

But it does me some good when I remember that it’s not about me. It’s about her. It’s about him. And it’s my job to support them in the very best ways I can. And I need to care for myself so that I have enough energy and emotion left to spend on them. But it’s really and truly about them.

It’s not mine. And it’s not about me. So I’m choosing to get over myself and get back to work.

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