And the horse they rode in on.

We throw the term “quality of life” around a lot. But what does it mean?

I’ll tell you. And if you don’t agree, come stay at my house for a little while. It will convince you I’m right.

Quality of life is finding joy and purpose in the ordinary. It’s waking up every day excited to be alive. Ready to do what you love. Feeling purpose. Feeling content.

It’s feeding your passion. Even if you are still looking for it.

It’s finding happiness in the people that surround you. It’s different for every person, but we all have the potential to have a beautiful quality of life.

Sometimes we may have trouble feeling happy, and enjoying life. It may take something extraordinary to give us a little push in the right direction.

That’s where Grant comes in. He has much to teach us about this. He has found his many passions, and he wakes up every morning excited for the day. When he discovered art at age 4, he found his passion and reason for living, and scotch taped it all over his beautiful little soul.

Our respite provider, James, says it is impossible to not be happy around Grant. He literally squeals with happiness sometimes. I love that sound. It is like a giggle and a squeal that bubbles up from his precious little heart. He is so alive and present. He just is.

But some may not understand that he does, in fact, have an amazing quality of life. They may feel because he is “mildly to moderately mentally handicapped” that he isn’t capable of that.

They would be wrong.

It is just a stupid label, in a world full of stupid labels. Like, for example, “retarded.”

This blog post is my emotional outpouring after reading something that really upset me, and made me think hard about the definition of quality of life. A three-year-old child named Mia was denied a life-saving organ transplant because of her label. A label of “mentally retarded.” Which supposedly reduced her quality of life.

I want to clarify that it is the viewpoint of her parents that this was the reason she was denied. I was not there, and I don’t know the details of the situation. I very much understand and acknowledge that the selection process for a transplant is very complex. Also, I acknowledge that a transplant itself is no easy thing, especially for someone who already has health challenges.

It is also important to me to say, for the sake of fairness, that I cannot imagine pediatric healthcare providers taking such a stance. In my very vast experience of nearly every pediatric specialty, these individuals have a calling to care for children. And they find joy and wonder in every child, no matter their abilities.

Before I go on, I want to provide you the link to Mia’s story. If you google it, you will likely find many, many articles. Her story went viral. Here is another link from a news station that includes the hospital’s response.

I will leave it to you to form your own thoughts and opinions.

But here is mine: if Mia’s care team even factored in her mental disability when denying her a transplant, it is despicable. From all I have read, Mia had much joy in her life, and without a doubt brought much joy to her family.

And that is where quality of life comes into play. Who is to say that Mia had a lower quality of life, than, for example, someone without a mental disability? Isn’t that basically saying that happiness is only reached if an individual meets society’s standard of “intelligence?”

Horseshit.

But I do want to clarify something else here. I don’t feel that “labels” are all bad. These diagnoses are crucial for several reasons. When you know your child’s diagnosis, for example, it can help you find resources for support. It helps you connect with other parents, and better understand your child’s challenges and leads you to ideas to help your child overcome those challenges. Diagnoses help early interventional therapies be more successful, because they provide more information to your child’s care team. I know this firsthand, as we didn’t have a diagnosis for Grant for the first 13 months of his life.

These positives should not be underestimated.

But that is where the value ends. A label can’t define you. Or your child. And it sure can’t stop you from finding your joy. Your passion. Your happiness. Your quality of life.

Those that think otherwise?

Fuck ‘em.

And the horse they rode in on.

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The difference seven minutes makes.

Did you know there is a secret society of badass moms called the “Second Shift Wives Club?” Yep, there is. I’m in it. I am hoping they don’t take away my membership card for outing us. We are hardworking mamas who have hubbies that work non-traditional shifts, or who travel. We have a secret handshake and everything.

But this blog isn’t actually about the Second Shift Wives Club. It’s about my dishwasher. Naturally.

Keep up, y’all.

Because, you see, there is secret war waging at the Meyer house – and it was started by our dishwasher.

But before I get into this, I need to make some statements. They are heartfelt and very true. I appreciate my husband very much, and understand that when he is at work from the hours of 1 p.m. to 10 p.m., he is working hard for his family. He would rather be home. But he works in distribution and logistics, and second shift is our reality. He does far beyond what many dudes do when it comes to household chores. He does almost all the cooking, loves to cut coupons and grocery shop, and uses his vacation time to either take Grant to Riley or help out on nights where the kids have conflicting sports practice schedules.

That said, he is driving me bat shit with the dishwasher situation. Every day, he finishes lunch, and before leaving for work, he starts the dishwasher. That means that every evening when I arrive home from work at 5:45 p.m., there is a clean load ready to be unloaded, and the counters are full of dirty dishes that have accumulated since the kids got home from school.

I have kindly explained to my loving husband that this means I can’t even begin the nightly onslaught of shit I have to do until I have unloaded the thing and cleared the counters. Because, as you and I know, children think they need to eat dinner every single night. They are funny that way. And I need space to fix said dinner.

I probably sound totally evil. I mean, how long does it take to unload and load the dishwasher and clean up the counters? About seven minutes, give or take. But I don’t have seven extra minutes. Here is the timeline of the average weekday evening at my house. Note: this is an easy night, aka a night with no sports practices (this currently only happens twice a week). You tell me where there is seven minutes to spare:

5:45 p.m.  – arrive home from work and debrief with my fabulous sitter, Breanna, who has been with the kids since they got home from school.

5:55 p.m. – go into the kitchen. Discover full dishwasher. Curse my husband.

6:02 p.m. – realize I don’t know what in the hell to cook, and that I need to start a load of laundry or else I won’t get it done before bed and everyone will have to be naked tomorrow.

6:04 p.m. – gather up dirty jeans and start a load.

6:08 p.m. – stand in the door of the pantry and scowl at its contents.

6:09 p.m. – stand staring into the freezer scowling at its contents.

6:10 p.m. – discover spaghetti sauce ready to heat up that my hubby made Sunday. Praise his name. Feel guilty that I cursed him over the dishwasher.

6:11 to 6:29 p.m. – thaw/heat sauce, boil noodles, heat bread, nuke some veggies and get plates out, all the while shooing Grant out of the kitchen as he attempts to come in every five seconds to nose around.

6:30 p.m. – call kids to dinner.

6:31 to 6:44 p.m. – stand at the kitchen counter shoving spaghetti in my mouth as I simultaneously go through the mail, start washing pans, check homework folders, sign nightly school agendas, give dog her meds, and start packing lunches for tomorrow.

6:45 p.m. to 6:52 p.m. – clean up kids’ dinner dishes. Loading the dishwasher reminds me I am pissed at my husband. Grrr.

6:53 p.m. to 7:25 p.m. – check homework, practice flashcards and frantically google the five main persuasive techniques of speech and prime factorization because I don’t understand my sixth grader’s homework.

7:26 to 8 p.m. (in no specific order) – call Lily up for her bath, start Lily’s bath, go down and bring up clothes left in the dryer, fold them and start putting them away while Lily is playing in the tub, call Grant up for a shower in the other upstairs bathroom, turn shower on for the water to warm up, leave him to get ready for the shower while I check on Lily, hear him yelling for help, run back to find him standing there with his shirt stuck on his head covering his face and his pants stuck down around his ankles because he can’t get his shoes off by himself from a standing position without falling over.

Let’s take a breath, shall we. Only about 10 minutes have passed at this point.

Okay, then I help Grant into the shower and leave him to soap up and rinse. But meanwhile, while I was helping Grant, Lily got shampoo in her eyes and started freaking out – causing her to get out of the tub, blinded by the bubbles, and run into her bedroom because apparently wiping her face with the drapes sounded like a great idea. But on the way to her room, she tripped – soapy, naked and blind – over the dog. Which scared Sara so bad she peed on the carpet. And Lily is now wet, soapy and covered in Golden Retriever fur. And there is pee on the floor.

Then, I help these two into pajamas and proceed to have the millionth discussion of my life with my 11-year-old son about why he needs to take a shower, and what very specific parts needs to be washed in said shower. Because if you don’t tell him every single time, soap may or may not be used.

8 to 8:09 p.m. – go downstairs and change laundry over, and get the kids’ “midnight snack” because even though they just ate, they are starved again.

8:10 to 8:20 p.m. – go back upstairs and finish putting away the load of laundry. Then I lay out clothes for the next day. Because if you think this timeline is hectic, you should see our mornings. My husband, who I dearly love, can only manage to sit half-awake in the Lazyboy each morning, clutching a Mountain Dew and looking for all the world like he has no idea where he is and how the hell he got there. But in his defense, it’s like 3 a.m. to him.

8:20 to 9 p.m. – for the life of me, I am not sure what happens now. I can just tell you it goes by really fast. I usually get on the computer and check our home and my work email one last time. Lily and I read out loud for her nightly school requirement. If it is Wednesday, we watch the Middle (I mean, who doesn’t love Axle, Brick and Sue?) and maybe Modern Family. If it is Thursday night, I try and watch Vampire Diaries while pretending there are no children in the house.

9 to 9:10 p.m. – I drag myself back up on my feet and fold the load of laundry that is now done in the dryer. I consider putting it away, and decide that is crazy talk. I get Grant his meds.

9:11 to 9:27 p.m. – tell children to go upstairs and brush their teeth and get into bed. The only one that goes up is the dog. Tell children again to go upstairs. Start turning off lights and electronic devices. Hear children shriek and run up the stairs because they have now figured out I actually meant it and they don’t want to be downstairs alone in the dark.

9:28 p.m. – panic sets in. What happened to my evening? I once again failed at my attempt to get kids in bed at 9 p.m. Run around like a crazy person to get everybody tucked in and then go brush my own teeth. Probably the cause of my lateness was the seven extra minutes caused by the damn dishwasher.

9:30 to 10 p.m. – Grant yells from his room for me to come give him a hug and a kiss. Then he has to go the bathroom. Then he needs water. I am now in an exhausted stupor.

10:20 p.m. – Mike gets home from work. I hear him coming up the stairs to change and take out his contacts. I prepare to rip him a new asshole about the dishwasher. But I may be too tired. Not sure. Then, he walks into the room and says, “Hey, I just put your coffee creamer in the fridge. I noticed you were out and stopped on my way home and got some. I knew you would want it in the morning.”

Damn. Now I can’t rip him a new asshole. Because he is awesome. Oh well, I was too tired anyway.

When you are married to someone who remembers your coffee creamer, who gives a shit about a dishwasher anyway.

Which was totally my point from the beginning.

My week of awesome.

 

“A hero is somebody who is selfless, who is generous in spirit, who just tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.” Debi Mazar

Through my journey as Grant’s mom, I have been touched by the kindness of many people. This week, one particular person kinda blew me away.

She’s this itty bitty thing with cute brown curly hair. She is a mom of five little ones, including three triplet boys. She is a super fast runner … like the kind of girl who can outrun boys – which ya just gotta love. Our friendship is pretty new, as I have only known her a little over a year. Of course, I met her on a trip to Vegas to run a half-marathon, so that bonds people pretty quickly.

The thing I have noticed about this particular chick is she seems to not realize her insane fabulousness. She is so beautiful on the inside, and equally so on the outside. She is hilarious and quite the blogger. She is also an awesome mom.

Here is what this amazing woman did for me … every day this week I had a special card with a handwritten anonymous note. All of the messages were uplifting. There was a gift card enclosed in every one. I don’t want to say specifically because I know she would be embarrassed, but I do want to say she picked places that were so awesome. For example, the movies and my family’s favorite restaurant.

While I loved every card, my favorite was the one with the Boston Terrier that said, “Times are tough. Yesterday, I had to sniff my own butt. This stinks, I hope it gets better soon.”

People often ask me what to do for a friend or loved one going through a hard time, such as a medical issue. From now on, my answer will be to read this blog. Every single day I felt like I got a big bear hug when I opened the card. It was so much fun. I felt so loved. It was like my crap sandwich had a chocolate shake with it. With whipped cream. The real kind. Like at an old-fashioned malt shop.

CHRISTY BOCCONE you are all that and a bag of Sun Chips – with a side of fucking awesome.

Love you girl.

Grant’s Scoliosis Story – Diagnosis and Brace Fitting

For readers of my Crap Sandwich blog, I wanted to update you on Grant’s scoliosis journey. I also blog on a hospital’s blog community, so I am including that link here. I chronicled our experience with Grant’s diagnosis of scoliosis and the molding of his brace. If you subscribe to me here because of my special needs parenting topics, you might want to subscribe over there as well. You will find my posts a little less “colorful” (ahem), but still with some crap sandwich flavor.

Not to worry, there is more crap coming soon. But for many of family and friends that want the latest Grant updates, I didn’t want you to miss this post.

And just for fun, here is a list of all my blogs written on the hospital’s community blog. Happy reading!

Curvy spines really piss me out.

I have to warn you, this post is totally like my brain threw up. With that out of the way, here goes.

As you may know, one of my favorite Grant memories is when he told his dad (after being told no about something), “Mike, you’re really pissing me out.”

And truth be told, I am totally pissed out myself. Today was our appointment with Riley Orthopedics. We left here at 10:15 a.m. to give ourselves plenty of time to get all the way to Carmel for our 11:30 appointment. And even with the Garmin, I got lost. Which is saying a lot. Who does that shit?

But we made it in the nick of time. To wait. Forever. And I lost my cell phone. But really, it was in the car, where it had slid to the very back on the floorboards. And I had to search frantically for it because I had typed in question for the doctor and they were in my memo app on my phone. Stupid phone. Stupid technology. Stupid Garmin. (In all fairness, I love my phone and the Garmin, and it was user error on all of the above. But I am still pissed out, so I am throwing some blame around just for the hell of it.)

We finally get into the exam room about an hour and 40 minutes later, and it goes from bad to worse. Grant and Lily, who were teetering on the edge by this point anyway, totally had meltdowns. And when the specialist finally walked in, they decided it was a perfect opportunity to begin arguing over a drawing game and literally kicking each other. Well, Grant was trying to kick Lily, and she was running around the exam table attempting to get in a few good kicks as she passed him. It was fucking lovely.

Now onto the ‘ologist. I give him props. Instead of glaring at the children or looking at me as if I am a horrible mother, he smiled and pretended all was serene. Love him for that. Then he pulled up Grant’s scans and proclaimed they were not detailed enough and we needed to redo them. So we did. Meanwhile, the children are still behaving like monkeys that have had too much sugar. Which they had not, I might add.

He begins to look over Grant’s medical history. His exact words were, “Wow, he has had a bit of a … ummm … packed health history.”

No shit.

And God bless him, we recapped as fast as we could, and he got onto the nitty gritty.

What are we going to do about my kid’s jacked up spine that is growing to the side while the rest of him grows straight up?

Unfortunately, the options all suck.

So, we are going with the less sucky option. Grant’s curvature is significant at 33 to 36 degrees. His scans show that although he is already 5 foot 10, he has significant growing left to do.

The choice of “waiting and seeing” is a bad one. He and I agreed completely. To not act would be, according to him, “playing with fire.” If his curve reaches 50 degrees, surgery would be needed to prevent major health problems such as respiratory distress. And Grant is a very bad surgical candidate due to his immunodeficiency and and other health conditions.

So a rigid brace is the only option. And there are no studies on how autistic children/those with sensory disorders handle this. The specialist is worried and so am I. But there is absolutely no choice. I am going to have to rely on my peeps on Grant’s team to help desensitize Grant to the brace and to give me skills/techniques to help him as well. We will have to work up to 23 hours a day of wearing the brace, likely until he is done growing.

OMG. Deep breath.

Another twist (no pun intended) is the fact that Grant’s curve is not a typical one (why would it be?). Instead of side to side his is kinda front to back (that is totally not a proper explanation, but hopefully descriptive). I asked if that could be because of chemo/steroid use during cancer treatment or perhaps Grant’s very low muscle tone he has had since birth, and he thought perhaps the low tone could have contributed. He wants to do a full neurological work-up to make absolutely sure we haven’t missed any other issues with his spinal cord. I am totally fine with this and happy he is being so thorough. We will be doing a spinal MRI under anesthesia as soon as we can get in.

Next steps include going back to AOI, who made Grant’s shoe orthotics as a toddler. They are very skilled with scoliosis brace fittings, so that is our plan. Then, after he is in the brace for two weeks, we will go back to the specialist. At the time, we will have all of the diagnostics back and can make a plan for moving forward.

Tomorrow, I am going to know that this too we can handle. That Grant has been through so much worse and came out smiling on the other side, drawing penguins and platypuses and loving life. That he is a total rock star that rode a horse for the first time at Camp Little Red Door this week. That handles medical tests like a champ. That says he loves you even though he won’t ever remember your name. That gave every boy on Avery’s basketball team a fist bump after practice last week, yelling “You guys are great at football!”

Tomorrow, I will know that it will all be fine. That we got this.

But today … today is not tomorrow. Today I am angry that he has one more thing to deal with. And I am sad that he continues to have challenges thrown his way.

Today I am just completely, totally, overwhelmingly pissed out.

The truth about Sheldon.

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Photo credit: the Sheldon Cooper facebook fanpage

Sometimes it’s as if I live with Sheldon Cooper. If you don’t know who Sheldon is, that means you haven’t discovered the CBS hit comedy The Big Bang Theory. (So get on that. Right away. It’s hysterical.)

Sheldon, played by award-winning actor Jim Parsons, is a brilliant physicist characterized by his quirky OCD tendencies, total lack of social skills and inability to grasp social nuances such as sarcasm. His over-the-top adherence to routine and inability to show emotion are central to many episodes.

Sheldon has Asperger’s syndrome, an Autism Spectrum Disorder. Okay, the show’s creators have never said officially that Sheldon has Asperger’s, but trust me, he does. Oh, how he does.

To clarify, Grant does not have Asperger’s. He was diagnosed with an Autism Spectrum Disorder called Pervasive Developmental Disorder Not Otherwise Specified. And no, I am not making this shit up. That’s really what it’s called.

Three years ago, he was reassessed at Christine Sarkine Autism Treatment Center at Riley Hospital for Children. Dr. Christopher McDoogle changed his diagnosis to Autism after observing and interacting with Grant for several hours (plus about a billion other tests and an interview with me). Grant is not classically autistic in my eyes because he can be quite social. But Dr. McDoogle gently reminded me that there is no such thing as classic Autism. Well, outside of Hollywood.

Speaking of, plenty of parents to special needs kids get upset over the portrayal of Autism Spectrum Disorders on the big screen.

I am not one of them.

Sure, liberties are taken. I know that. But because of shows like NBC’s Parenthood or The Big Bang Theory, people know these disorders exist and have some understanding of the challenges they cause. And that’s a start.

And I promise you – there is some Sheldon in my Grant. Take the recent haircut episode. Sheldon discovered his regular barber was hospitalized and thus unavailable. Missing his haircut “day” caused a tragically funny spiral into chaos for Sheldon. That has totally happened to Grant. Not that he gives a rat’s ass what the lady’s name is at Great Clips that usually cuts his hair, but if she is not there, he flips out. He needs at least a week to prepare for something like that, and even then, it is hard to bounce back.

And the hilarious scenes when Sheldon knocks on Leonard’s door repeatedly, saying his name again and again – not realizing how annoying it is? Grant did something similar last night. He was finished with his shower and called out “I am done!” This is supposed to be my cue to instantaneously appear to help him out (because a Grant on one leg is not an upright Grant).

I had a few things going on and couldn’t get right there. So for about 3 minutes he yelled, “I am done,” over and over without hardly a breath in between.

It’s a lot funnier when Sheldon does it.

Let’s take slang or common social phrases. Like Sheldon, they mean nothing to Grant. Here are three real-life examples I’ve heard Grant say:

Us Grant
“For crying out loud!” “Cry me out the door!”
“You’ve got to be kidding me!” “You’ve got to be joking to me!”
“You’re driving me crazy!” “Lily made me drive crazy!”

And the best ever was when he once told my husband, “Mike, you’re really pissing me out!”

I think it’s okay that The Big Bang Theory creators haven’t labeled Sheldon. In a way, it helps viewers appreciate him for his Sheldon-ness instead of a diagnosis label. Because as we all know, a label is only that. It doesn’t define us.

If you’ve read my blog before, you know humor is big for me. I hope I haven’t glossed over the not funny stuff, though. There’s a lot of it. My best friend’s little girl was recently diagnosed with Asperger’s. She’s a beautiful little first grader with fabulous corkscrew curls. Anna is as smart as she can be. And because she’s such a smart little cookie, she’s been able to compensate pretty well in school for the developmental and social areas where she struggles. That’s why the school says she doesn’t need an IEP (special education plan to address her Asperger’s). She’s apparently doing just fine.

But she’s not. Everyday is hard for her. For example, Allie just told me that she doesn’t eat at school anymore because the noise in the cafeteria is too overwhelming. She waits all day without any food and then scarfs down her lunch in the car on her way home. And when her routine is changed at all, she just shuts down.

It’s atrocious to me that Allie may have to get an attorney to get her daughter the IEP she needs and deserves. Asperger’s is very real, and can be devastating. I see Allie struggle and Anna struggle and the impact on their family.

Asperger’s isn’t funny all the time. Sometimes it’s frustrating. And other times it breaks your heart. It completely, totally, devastates me to think of this lovely little girl sitting in the cafeteria unable to eat.

Here is what I will tell you though, about Allie. She does still laugh. All of the time. And so do I.

This is the woman that I remember sharing with me a concern over a developmental milestone her son hadn’t met yet. Grant was a toddler at the time. I responded, in a reassuring tone, for her not to worry because Grant hadn’t met that milestone at that stage either.

We paused in silence for a moment, letting the absurdity of my statement sink in.

I can’t remember her exact response, but it was probably something like, “Care bear, I’d give that child a kidney today, but I gotta say, he’s not exactly the poster kid for childhood development.”

True dat.

And Allie, if you’re reading this, I’ve known you for 25 years and I know where your organs have been. So I am not so sure I want my child to have one of them. But I love you for the offer.

And now, back to Sheldon. Maybe by understanding that Sheldon has to sit in the same spot on the couch every single day, you will better understand that Grant has to sit in the same bus seat every day. Or that when Anna gets overstimulated she might start doing a weird dance reminiscent of Elaine on Seinfeld.

Or maybe you never gave it that much thought. Maybe we should all just watch Sheldon and laugh.

Because if there is one thing I have learned from all this – if we stop laughing, we’re totally fucked.

And that, my friends, is the truth about Sheldon.

I’ve got people.

That’s right. I’ve got people. After all, it takes a village to raise a Grant.

But not because raising a special needs child is hard. Um, scratch that. Raising a special needs child is super hard.

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Angela, our behavior therapist

What I meant to say is this – it takes a village because exceptional children deserve exceptional people to help them be the best they can be. And as parents, we can’t always be exceptional at everything for our kids, no matter how much we wish we could.

Come to think of it, this is true for parenting all children. And every child deserves exceptional people in their lives. I am so blessed that all three of mine have had their lives enriched by some of the coolest damn people in the whole wide world.

Grant began early intervention services when he was 16 weeks old. Since that time, he has worked with many, many amazing people – speech therapists, developmental therapists, behavioral therapists, physical/occupational therapists, physicians, nurses, case managers, teachers, educational aides, daycare providers and more.

I wish I could introduce you to every one of them. Miss Stephanie, his developmental preschool teacher, was so excited she cried when Grant finally went potty in the big potty for the first time when he was 5.

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Lindsey, our main nurse

Maggie, his first-ever physical therapist that literally taught Grant to walk. It took 3 years. God bless her, she cried too. Probably from the back pain.

Then there was Lori, the occupational therapist that helped Grant learn to eat solid foods. And our other Lori, his speech therapist, who taught him sign language, then a picture communication system (PECS), and eventually, words.

Still in his daily life are Mr. B and Mrs. P from school. He has been with them since first grade. Then there is Cindy and Don (“Cinny” and “Mr. Don” to us) who provide respite care for us, and in years past, daycare. They are our family who just happen to have a different last name.

And speaking of names, Grant almost never knows the names of the many folks that are a part of his life (with a few exceptions). He can tell you about some obscure bird in the rainforest, but he only knows 13 names. And two of those are dogs. One of which died 5 years ago.

The whole name thing is not personal. It doesn’t mean he doesn’t love you. He just doesn’t get the point. I am pretty sure he thinks names are a fad.

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Andy, our music therapist

As a little guy, he would look at us in confusion when we tried to reinforce names. The look in his eyes clearly said, “Just tell me what I need to call you lady to get a bowl of goldfish crackers to come my way.”

I am working on flashcards to help him learn some new names. So I thought I would introduce a few of  “my people” to you.

Pictured 1st is Angela, our behavioral therapist. She’s been with us for years and is the little voice on my shoulder helping me along. Not to mention she is super cute and when she comes to pick Grant up for an outing all the boys in the neighborhood are wondering how Grant gets all the pretty girls.

Pictured 2nd is Lindsey, our main nurse when Grant goes for his infusion every four weeks. She’s also a cutie, and has been caring for Grant for years. What I love best about her is how she is firm and loving at the same time. She always reinforces good social skills with Grant, and never lets him slide by without behaving as she knows he can. Yet she has a laminated piece of his art under her RN badge at all times. She’s never brought it up to me, and I’ve never asked her about it. I just notice it when her badge has flipped over. It makes me love her even more.

And then there is Andy, our music therapist. He once followed the Grateful Dead, now he makes music in our living room every Thursday evening. Avery and Lily come running down the stairs when he arrives to chatter with him. And he always, always, lets them play music with him when he is done with therapy. When he was at our house last week, I noticed before he left Lily hugged him and told him “I love you Andy.” When he is in our house, everything is just better. I can’t be stressed or frustrated when he is playing guitar. It is simply impossible.

So there are some of my people. But I’ve got lots more. I wouldn’t trade them for eleven billionty dollars.

A broken “leeber” and other ramblings

So we were at one of Grant’s ‘ologists recently. More specifically, we had an appointment with his peds neuro (translation: pediatric neurologist).

As ‘ologists go, we like her quite a bit. She is a bit older and very sweet. She is always kind – to me, to Grant and to her staff. I want to give her fashion advice because she dresses likes she’s Amish, but that’s another blog entirely.

Anyhoo, you can’t help notice this doctor’s German accent. And while I hail from the same mother country, it has been awhile since my peeps were there. Like 200 years.

And since then, they’ve been in places like Louisiana, where I was born. And as my husband will tell you, when I get mad or stressed, the N’Orleans just pops right out. Add a little flavor from my hometown in the Southern tippy-tip of Indiana, and this adds up to a helluva language barrier.

So she was asking lots of questions, and I was answering her best I could. We both had to repeat ourselves several times, making the appointment a tad lengthy. (Translation – extra time for Grant to become bored and start getting into shit. And trust me. If there is shit to be gotten into in an exam room, Grant has had ample time to discover it.)

So we are talking about Grant’s attention span (or more specifically, his total lack thereof), when I heard the familiar “puff puffing” of the blood pressure cuff attached to the wall. Double damn, Grant is taking his blood pressure (on his ankle).

Now I am trying to continue the conversation as I attempt to disengage said blood pressure cuff from said ankle (how the hell did he even it get it to stretch that far?!?!).

And then I accidentally pull the whole thing off the wall, after which I trip over a rolling stool trying to catch it before it hits the floor.

So then I compose myself, sort of, and continue the conversation.

Have I noticed any changes in his sleep, she wants to know. I am giving her the low-down when I catch Grant out of the corner of my eye and now he’s got the otoscope. I totally know what’s about to happen … yep, I called it. Straight up his nose.

I am now thinking, dear God why must they have all this medical equipment hanging all over the place in here (I mean other than the obvious). Can’t the doctors wear that shit around their waist like a tool kit?

And just as I am about to take the otoscope away, she mentions something about blood work and Grant’s “leeber.”

Wait, what did she say? His leeber? What about his leeber? Wait, what the hell is a leeber?

And even more importantly, why does she think my kid has something wrong with his?

Now I am sweating because it’s a thousand and eleventy degrees in there, medical equipment is going every which way and up the nose, and there is something wrong with Grant’s leeber and I have no fucking idea what that is.

Things can’t get much worse and then she is right up in his kool-aid measuring his head.

Oh God, why have I never noticed how bad her teeth are? Oh shit, Grant is totally, most certainly going to say something. Because this is the kind of social faux pas that autistic children may occasionally make.

Sure enough, he has now completely focused his attention on her mouth, and he is staring very intently. He starts to point, opens his mouth to ask something, and I begin a violent coughing fit, trying to drown him out.

It’s no use. He doesn’t care if I cough to death. He just wants to know what’s wrong with her teeth.

Finally, the longest appointment in history ends. Turns out, Grant doesn’t have a leeber after all. But he does have a liver.

And it’s just fine, thankyouverymuch.

The problem wasn’t his underwear.

Every mom has her own style. Some moms are the kind that bring adorably-decorated baked goods to their kid’s school in coordinated Tupperware (that they labeled with a cute little sticker with their name on it that they probably ordered online from a website run by moms just like them). I am not that mom.

Other moms have a carefree style of mommying. You know, they sort of let their kids do their own thing, be their own person, etc. They may or may not worry about things like multi-vitamins, clothes that match and developmentally appropriate toys. I am not that kind of mom either. Hell to the no. Although I occasionally daydream of what that must be like.

So what kind of mom am I?

I’m the kind that overreacts.

You see, I worry about all manner of things like multi-vitamins and developmentally appropriate toys. I painstakingly tracked all of my children’s milestones, progress on the growth charts, and can whip out vaccination records, medication lists and emergency contact numbers (laminated of course) from my purse.

This may just make me sound well organized. But when my children get sick, this overreacting gene really goes into high gear. I once took Lily to the pediatrician because she stopped bearing weight on her legs, convinced she had bone cancer. Turns out she just wanted me to carry her. Which is apparently quite normal for a two-year-old.

And I remember when Grant was five, and undergoing chemotherapy. I had all of the possible side effects of every single medication he was on memorized. So when his tooth fell out, I went into full-fledged panic mode. What the hell?!?! I knew his hair would fall out, but his teeth? I paged the oncologist at 9 p.m. on a Sunday. Turns out that losing teeth is quite normal for a five-year-old. Even one with cancer.

I would like to say that I am this way because I am a parent of a child with special health needs. But have you met me? I am (happily) high-strung. A low-key, laid-back Carrie just wouldn’t seem right, somehow. I mean, what the hell would I do all day? I don’t have time to be laid-back, people. I’ve got shit to do.

But there was this one time, a couple of years ago, that I didn’t overreact.

I can picture it like it was yesterday. I was about to put Grant onto the school bus, when he mentioned to me that he felt a pinch on his side. He sorta pointed in the direction of his waistband. Grant is no complainer, so for him to even mention pain is really unusual. That should have tipped me off.

But nope. In a completely un-Carrie like manner, I didn’t leap to conclusions. Or overreact in any way. I just calmly decided that the reason he felt a pinching pain on his side was because – wait for it, this is good – his underwear was too tight.

I know, genius, right?

So what did I do? Why, I changed him into boxers and sent him out to the bus of course.

And then two hours later, I received a phone call from a hysterical school nurse that Grant was urinating blood, screaming, and projectile vomiting. Imagine, if you will, that the nurse’s station at Grant’s school is in the administration area, so everyone from the principal to the secretary was also hysterical.

Apparently, the problem wasn’t his underwear.

An ambulance was called, and Grant was rushed to the hospital. His principal and teacher’s aide followed behind in their car. My co-worker drove me to the hospital to meet them. Because I also was hysterical and couldn’t drive myself.

Let’s review.

We now have a hysterical Grant, hysterical principal, hysterical teacher, hysterical mother and a hysterical school nurse. And an ambulance. And bloody pee.

Definitely certain at this point the problem wasn’t his underwear.

A bit later, it was determined that Grant had three kidney stones. Because he has the worse luck ever and turned out he has a kidney diagnosis we had not yet uncovered. But the good news is he quickly passed the stones, and he now takes special medication and eats a low-sodium diet to prevent this from happening again.

But my point is, look at the shit that happens when I don’t overreact.

So now I am back to overreacting.

It’s just better for everyone that way.

Help Mr. B and 16 Exceptional Learners!

Hey y’all. For those that are now fans of Mr. B, he could totally use your help. Actually the 16 fabulous kiddos (including my Grant-man!) in the Explorer’s program could use your help. They are raising money for a special trip.

The Neil Armstrong Elementary Explorers Program is a group of students with special needs from kindergarten to sixth grade. These exceptional learners have a variety of disabilities ranging from Downs Syndrome, Autism Spectrum Disorder to other physical and cognitive disabilities.

The educational team of the Explorers Program hopes to continue the tradition of an annual class trip. They hope community businesses and other fabulous folks like you, my blog readers, will help support this worthwhile endeavor.

In the past years, they have taken the kiddos to experience the Shedd Aquarium in Chicago and the Magic House in St. Louis. These hands-on-learning experiences have encouraged creativity and developed problem-solving skills in children who have faced leukemia, a heart transplant, and numerous surgeries, just to list a few, while also serving as an enticement to further learning. I personally helped on the trip to Chicago, and it was, in a word, MAGICAL.

So here’s what you can do:
“Like” the Neil Armstrong Elementary Explorers on facebook to show your support. They have wonderful photos of past trips that you will love to see!

Consider donating to the trip online at this great, totally secure site that the school put up.

Photo is of Grant on the St. Louis trip, excitedly pointing!