I wrote this follow-up and it’s pretty sweet, which is, you know, good to read from me once in a while, no?

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- First, a big announcement that I’m working with Build-A-Bear Workshop for Support for Special Needs. They’ve asked us to share Quinnlin’s experience with special needs through her eyes with a new pal, Champerina. I have to say, the girl is loving it. She hammed it up for the first post, which is here on their brand new blog. Go and read and comment and share. They are helping support Support for Special Needs and that allows us the community that helps special needs parents and kids, so I want to make sure our supporters tell them thank you! We have some other work we’re doing together in the future and I’m so proud.

- I spent much of last night in the E.R. because of kidney stones. It’s not a good story – certainly far from the story above – because I had two stones in a very sensitive place and it hurt quite a lot. It was the worst pain I’ve experienced and so, it wasn’t so much fun. I’ll be getting them blasted and that involves pain meds, so there you go. Why would I tell you that? Just to illustrate we’re all kidney centered around here. DO NOT DRINK OUR WATER.

- As a result of the work I did last year for the BlogHer Special Needs Mini-Con I’m proud to say that BlogHer has asked me to be on a committee with some fabulous women to plan this year’s special needs track. The track is expanding to the day before BlogHer and it’s part of their HealthMinder Day. The great thing is that I’ll be able to participate more in BlogHer this year than last and that’ll be cool. I’m so excited about it and thrilled they asked me to be involved again this year!

- Gage tried out and made the track team. I think everyone made it – it’s a small school, but I’m so happy it’s physical, he followed through and he’s happy to have made the team. All good stuff.

- Quinnlin was sick for many days and she ended up at the doctor a few times and then the E.R. anyway and so she got better and now her head is stuffy again. Time for ENT appointment. Again.

- I’m looking for a new pediatrician office. Last APRIL I wrote this letter after a series of incidents. I faxed it twice. Nada. I was in the office in July or August and mentioned the incidents and the letter to the doctor – one of our favorites – and she assured me she would get to the bottom of it and contact me. Not a word. So, we got settled into school and fall and flu shots and so here we are in February. Over the last month or so, we’ve been there three times (or 4?) times for regular sick kid stuff. The last visit I was handed a survey for the visit before the (new) doctor came in and I was able to list my issues. I literally wrote “Generally I am not satisfied with the practice right now and considering leaving because of incidents in April I’ve tried to address three times.” (or something similar). I felt bad for the new doctor, was apoligetic, telling her I realized she had nothing to do with my feelings but explained the situation. I watched her hand write a note, attach it to my survey, and walk it to the founder’s door. That was over two weeks ago. I’ve heard nothing from the founder. As much as I hate the thought of changing peds, it must be done. I’ve talked to one office and ruled them out in about 3 minutes. I have a message into 2 others and have a couple more to call, thanks to good friends who know people.

Obviously I’ve not wanted to switch, because dang, I have enough stress than going through a new search for a team for the next 8 or so years but look I must.

- Gage is still steroid free. We’re doing weekly labs, hopefully that’ll end soon. Even if he goes back on them, I’m so happy we tried. I’m so happy right now it seems to be okay.

So I’m ending this with a photo that I love because it seems like a good day for cuteness.

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You know what? I think you are amazing and this is my love letter to you.

I love how fierce you are about your kid.

I love how you protect them and when you have to, I love how you fight for them.

I love how you distract them from noticing the people who stare.

I love how you take their most humiliating moment and you breeze through like it’s normal; how you don’t even flinch.

I love how you memorize medications.

I love how you research symptoms and treatments.

I love how you work with people to get Whatever-Has-To-Be-Done handled.

I love how you maintain other relationships in spite of the 18 directions you are pulled in any given day. Or hour.

I love how you juggle 22 things in the 18 different directions and you make it look easy.

I love how you stay strong enough to talk your kids into shots, needles, and tests. Without crying in front of them.

I love how you look proud and supportive for your kid during their 5 evaluations (this year) even though you are dying inside.

I love how you have become who your kid needs and let go of any preconceived notions.

You are amazing, you parents and caregivers. We are amazing. Happy Valentine’s Day to you. Thanks for being on this journey with me, with our family. You’ve changed my outlook, my path. I appreciate you and all you do.   And I hope you have a wonderful day.

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Dreamer, smart, kidney recipient, collector. Happy, sad, mad, funny, energetic, demanding. Brother of Quinnlin, in Atlanta. Animal lover, environment protector. Owner of Lucy, The Wonder Dog. Friend, silly. Witty, resilient.

1st Year of LIfe (8 months old)

A teenager. There, I said it.

You’re 13 and alive! Not only alive but living a very fine life, indeed. Along with being 13 you are about to hit your 5 year anniversary of your kidney transplant. It’s a big year. There’s some research somewhere that says if you make it to 5 years post, it means you have a greater chance to have the kidney longer. Or something like that.

It’s been an interesting 13 years raising you, technically, I mean. In some ways I think you’ve raised me. You know what that means?

It means I’ve morphed into the kind of mother you needed and not the kind I thought I would be. You’ve raised me to reach depths in myself of love I didn’t know I had. Love for you, love for myself and love for life in a different way. Life in a way that looks “different” than the norm, where incremental progress is worthy of celebration. You’ve helped me see that is important too.

You’re amazing. You have more guts and more resiliency than anyone I know. I’ve seen you in as much pain I’ve seen anyone in and yet, you are embracing life again. I’ve seen you literally fight your way back from death in more ways than one.

Thank you thank you for letting me be on this journey with you. Whatever life brings you I will be next to you as your biggest cheerleader and hopefully I’ll be the grounding you may need when the time comes. I will never leave you. When things get tough, we’ll get through it together because we know you can survive anything.

As your confidence comes back as you enter your teenage years I feel privileged to be witnessing your journey firsthand. You can do unbelievable things when you put your mind to it and your life so far is proof.

Happy Birthday Gage! May your teenage years be kind to all of us, most of all you!

Love,

Mommy (you still call me that and I love it so)

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He amazes me, still. 

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This picture has nothing to do with any of these quotes except that they were having a good time. Which often is happening when we are making a Mutant Saying.

Quinnlin, telling us about her substitute: “We didn’t have to learn anything all day and she was so nice!”

—–

Gage, texting with his BFF on the day he was in the hospital. She asked the time of his procedure.

Gage: “I told Laura it was ABOUT 12:30 because at the hospital, time is not normal.”

——

Gage, in the hospital and hungry. Playing with new iPhone.

Gage: “I’m so hungry.”

Me: “I know, I’m sorry, but you can’t eat.”

Gage: “All I need is a food app!”

——

Gage, grinning: “I can tell we’re not going out for dinner tonight.”

Me: “Why?”

Gage: “Because you took your bra off.”

————-

Me: Loud sigh

Quinnlin: “I know. (Pause and Sigh) You’re having a sensory overload.”

————

Quinnlin: “Do I have autism?”

Me: “No, you have delays because of your vision disorder and you were sick for a long time. You have developmental delays.”

There is a pause and for a brief moment I think she is disappointed.

Quinnlin: “Oh, I just thought I would ask because a boy said I probably had autism and I have heard a lot of kids have it.”

Me (thinking…make it positive!): “Well, having autism isn’t original…there are only 3 kids in the world who have what you have!”

————-

Me: “I sure am going to miss you. I have to get the kids up for school for so many days in a row.”

Julian: “Are you going to miss anything else?”

Me: “I’ll miss you taking out Lucy and the trash, too. Oh, and you!”

————

Me: “I love you.”

Julian: “Love you, too.”

We kiss.

Quinnlin: “Ewwwwww. Do you guys have to do that?”

Me: “You mean kiss? Are you kidding me? I just want you to see us doing something other than doing stuff for you!”

Quinnlin: “Why would you want to do that?”

————-

Julian: “So, are we going to do anything for our anniversary?”

Me: “You mean our 1st 17th, since we celebrate two 16s?

Julian: “So, our 18th. Yes.”

Me: “I don’t even know why we have to put years on it, it’s just one long period of bliss.”

Julian: “Yeah. That’s what you call it!”

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May 09, never afraid, risk taker.

Two years ago tomorrow (around lunchtime) my beloved and I drove our son to a mental hospital to admit him for an unknown amount of time. It was for his safety. It was for his mental state. It was the most gut-wrenching thing I’ve ever done.

He was not well and we couldn’t help him any longer. We literally did not know what else to do. It was, by far, miles harder than facing kidney failure, dialysis and transplant. For those aliments, largely accepted in mainstream media and our culture as not being the patient’s or parent’s fault, we knew what to do. We knew what the treatments were. Not so with mental health.

Last year, One Year after Driving Away, I wrote this about how I was sitting at my desk even 12 months later weeping about what Gage and we all went through. Two years later and I’m still not finished crying, but I suspect some of my tears are relief that my son did not follow through on his wish to kill himself.

When I talk or write about suicide and our nine year old hurting boy, I always pause for a few seconds and wonder if I should. I wonder if the world is ready for these stories. I wonder if he’ll be accepted for his unique charm and view at life or if he’ll face hate placed on him by people who do not understand that mental health issues have nothing to do with a person’s ability to not just “feel better” or to “be happy.”

I use words like “die” and “kill himself” and “suicide” because if people can’t even read them, hear them or say them it enables a breeding ground for people who suffer from depression to hide away when they should be reaching out. I think it’s easier if we talk about it. Say the words. Attach those words to people like Gage.

When I talk to Gage regarding blogging about that time in his life when he wanted to die he often says, “Yeah, it was bad.” We constantly talk about how us telling his and our story will help someone like him one day and how much compassion he is creating from people who just didn’t understand before we shared his depression and recovery. Until we – and those who judge him – acknowledge that mental health is as important as his medical health there will be people who don’t and will never want to understand.

A perfect example is a parent of a former classmate of Gage’s who constantly judged him (and us). Not only did she, she encouraged her child and others to do the same. She placed less value on Gage’s life than that of her children and other typical children. She made Gage’s life harder by treating him differently when she came into contact with him and other kids because of his behavior and attitude, which was due to his mental and physical health challenges. She passed on her bias and lack of compassion to other people, making it even harder to educate and change minds.

You know what though? There are so many people that tell us they’ve learned from knowing Gage’s story. They’ve said they judge less and let in more compassion. Why? Because they’ve been able to see Gage’s transformation from sad, suicidal boy, to thriving teenager. They’ve seen his transformation was possible with proper treatment. He’s gone from wanting to die to wanting to do. Do what? He wants to invent things and learn about history. He wants to go outside and ride a bike, he wants to go through trash and find a treasure. He wants to hold his hamsters and read interesting books about adventurous boys.

He says, “When I grow up.”

There was a time when he couldn’t say it because he couldn’t picture it for himself. When he was 6, as he told me recently, he overheard a doctor tell us he could die. I think his survival depended on not thinking about the future. I think he held tight to the possibility he could die and quit thinking about the future, then PTSD and depression set it and it was too much. He moved from thinking he could die to wanting to die in a matter of 8 months.

He’s not that boy anymore. I recently ordered a brick to be placed at his new school and the words speak to the new boy he is; one with hope and happiness. I wrote a lot of iterations of it before we all decided on the following…

In Honor of Gage * Smile Maker * World Shaker

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“How was your day, honey?” I said, like I do every day she bounces in my car.

On this day she is holding stapled sheets – like most Tuesdays or Wednesdays – along with her jacket and messenger bag. She isn’t in the car more than 5 seconds before she pushes the stapled sheets in my face, she says…

“I hate that they blow up my work like this because it makes me feel dumb and no one else has to do this and why can’t I just be normal?!!”

Sigh.

She’s 10 now and is noticing how she is different from her friends in her everyday life. Gage doesn’t have these issues, because he largely does not care what other people think of him. It is a characteristic that has served him well and likely will in the future. Quinnlin isn’t like that and as soon as she noticed she had accommodations that her friends didn’t have she’s hated it.

• Her removal from the class to work one-on-one? “I’m so stupid.”

• Modifications made to worksheets? “Everyone will think I am stupid when they see it.”

• Sitting close to the board so she can see better? “Why can’t I be normal, like everyone else?”

• Printed out sheets from the board so she doesn’t have to track back and forth to work? “I hate my stupid, stupid eyes and what they can’t do!”

• Testing in a different room with a small group? “Why can’t I just be like everyone else and NORMAL?”

To any of the above questions I ask the ever-present questions, most likely asked by every parent of a kid with differences, either to the child or privately to themselves: “Did someone say something? Did someone make you feel bad about it?”

I asked those questions on this day too, as she pushed the stapled sheets in my face. “No! It is just me, me, ME! I FEEL STUPID when people can see the sheets blown up! I keep telling the teachers I DO NOT NEED my work blown up but they say they can’t!” (because it’s in her IEP)

Huge tears fall. Unusual is the fact that in my car there is not an abandoned napkin for me to hand to her so she keeps wiping her face on her too-long sleeves that are wrapped around her knuckles. He breathing is quick and rhythmic. This cry isn’t the one that we normally hear when we’ve offended her by rules or her brother has wronged her.

This cry is painful. Deep. It’s the cry we know is inevitable as a parent, but we wish we’ll bypass due to some cosmic intervention. It’s the cry that seems to go on longer than it is in real time because it represents the deep pain of lack of self confidence.

It’s the cry of the pain of realizing you’re different.

When we can make a Quinnlin Modification to a modification currently in place, I’ve wanted to try. So we will try to do the worksheets of math at “normal” size and she’s agreed to have language arts work blown up because there are 4 others that also have theirs blown up.

One of the hardest things about helping Quinnlin navigate growing up and realizing her differences is trying to get her to understand we’re all different. That is little comfort when the differences hits you in the face daily. It is little comfort when you know others know you’re different. It is hard to teach there is beauty in difference to your daughter when one hand holds stapled, enlarged worksheets and the other holds a too long shirt wrapped around her knuckles wiping the large tears.

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Please note the on the floor because “models have fans blowing on them.”

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I’m also thrilled to announce that they have a new blog coming (Yes, I’ll let you know when to goes live!) and we’ll be sharing Quinnlin’s journey, and a very special friend will be along for the ride.

When I asked Quinnlin if she wanted to share the story of her and a very special friend on a new blog for Build-A-Bear Workshop she said, “That’s so cool! It’s like I’ll be famous!”

Until then, you can see some cute pictures over at this post sponsored by Build-A-Bear Workshop!

See? This is Quinnlin, enjoying having just created one of her many very special friends at her 5th birthday party!

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