Listen to Your Mother (the video)

A couple of months ago, I was honored to participate in Little Rock's Listen to Your Mother show. It was an amazing show, an amazing experience, and featured a lot of really amazing people. Well, the videos are now up! Here is the link to the YouTube channel featuring the whole cast: https://www.youtube.com/playlist?list=PL5oPQWgVdsDk2FBvDL5xLJPW0nIy6I9PD

If you have some time, you should definitely check all of them out!

Here is a link just to my story:
https://www.youtube.com/watch?v=rZ9xx3i57gE&list=PL5oPQWgVdsDk2FBvDL5xLJPW0nIy6I9PD&index=10

If you notice, I only look in one direction. All of my family and friends were sitting on one side of the auditorium. I knew if I looked in that direction, I'd lose it even more than I did. So i just kept looking away from them.

Also, here are some pictures from the evening. Thanks Jabob Slaton (http://www.jacobslaton.com) for the amazing photography!

I am terrible at pictures like this.

Power posing. Obviously. 

The cast! 

Actually giving the talk.

The big finish! 

These are my people. So happy they were there to support me! I couldn't do life without them.

Kid's Menus Make Me Want to Punch Someone in the Throat

Have you looked at a kid's menu lately? You know what's on 90% of those menus? Fried food, rice, and macaroni and cheese. My kid LIKES vegetables. So do most kids, until they get exposure to kid's menus. It's 2015. Parents want to feed their kids vegetables, fruit, grilled food, etc. I want Semmes to continue to explore food, to continue to try new things, to continue to be interested in healthy food.

This is the kid's menu from P.F. Chang's. Yes, there is a vegetable option, but look at the Kid's Chicken Fried Rice. They actually seem proud of themselves for taking the vegetables OUT of the fried rice! Honestly...

I have a friend who has two elementary-aged children. They eat mostly fried food, french fries, etc. And she thinks a large reason for this is that whenever they went out to eat, that was what was available to them. Kids are people too. They want variety. They want to be challenged. They want to eat real food! Let them!!

Acts of Kindness

Honestly, I've been pretty lucky as a special needs mom: no real confrontations with assholes, not too much "advice," etc. Some of this I chalk up to dumb luck, but I think a lot of it is who I choose to surround myself with. My friends, the people I have chosen to grow close to me and our children, are awesome. A couple of things that have happened in the last couple of weeks have made me realize just how lucky I am.

We went to a friend's daughter's first birthday party last weekend. It was a great party and both boys had a great time. My friend's dad, who had never met me or either of my children, made a point of going over to Cooper, sitting next to him, and then had a little conversation with him. It was amazing to watch. And I realized just why Rachael and I are such good friends: she comes from good people.

Last Sunday, Brad was working nights. So I took both boys to church by myself. Semmes loves communion; he wants to "eat the bread." So I always go get him from the nursery before communion. It's hard to keep Semmes quiet and occupied in church and sit with Cooper. My friend Sydney and her mom have just made themselves the bonus moms of my children on Sundays when Brad is on nights. They go to the nursery with me, they hold Cooper, they let Semmes play with their son/grandson's toys and read his books, they walk Cooper to communion while I walk with Semmes, and after church they help me get everything to my car. They are everything church is supposed to be: warm, welcoming, supportive, helpful...I'm so thankful for them every week.

So, my friends, thank you for being you. And being awesome. And for never making me feel different or that there is anything wrong. You people rock, and I'm so thankful for you!

Saturday Happenings

Today has been surprisingly busy. We got up this morning and went to The Toggery to get silhouettes of the kids made. They turned out really great!

We also got Cooper a tooth fairy pillow while we were there. When he went to his 4 1/2 year dentist appointment, the dentist told us that two of his six year molars were already in and his two bottom, front teeth were already loose. He should loose them in the next few months! Crazy!

After naps, I took the kids on a short walk, then Semmes and I painted. I'm becoming quite the Pinterest mom (ha, yeah right!). The "paintings" turned out pretty cute!

The Lie

Sometimes, parents lie to their kids. It happens. You know, "Your face will freeze like that," "They're out of cookies at the grocery store," that kind of thing. Yesterday, we told Semmes his first lie: that alligators live in the sewer drains.

We were on a walk and he was eating a banana. He had rubbed a banana peel all over his car seat the day before, and it had to be cleaned. So I didn't want the same thing to happen again. Brad took the peel away and went to throw it in the storm drain. Semmes was crying and carrying on about "his banana peel." So I told him that we were feeding it to the alligators that lived in the storm drain. For the rest of the walk, every time we passed a storm drain, he would point and say, "agilators (his cute word for alligators) live there." I was kinda hoping he would forget about this, but he's STILL talking about it. And how alligators live in swamps, ponds, and storm drains. I've scarred him for life. 

Listen to Your Mother show

On Thursday night, I participated in Little Rock's Listen to Your Mother show. It was an amazing cast, an amazing experience, and I am so honored that I was even allowed up on stage with the other 12 people. I had a great time getting to know them all (and getting so distracted by each other that we got stuck in an elevator), and all of their stories will remain with me.

LTYM is in 39 cities across the country, and there will eventually be a YouTube video of my talk. But that won't happen until mid-summer. So for now, I'm posting my talk so you can all read it. Happy Mother's Day, and enjoy!!

"Two Mothers"

I am two mothers.  I am a special needs mom, a label I never imagined I would have.  And I am a “typical” mom.   I am as comfortable with pulse oximeter readings, feeding tubes, and seizures as I am with play dates and the complex rules of toddler sharing.  It’s a complex balancing act that requires both children to have a little less of me, but isn’t that true of all mothers of more than one child?

I became a mom in August of 2010.  What should have been one of the happiest days of my life quickly turned frightening when Cooper wasn’t breathing well.  Plus, he was born looking just a little different than a typical baby: enough that he was almost immediately tested for genetic variations, but not enough that anyone could pinpoint what, exactly, was wrong.  Cooper was rushed to the NICU to be fed and breathed for, and we went into a holding pattern until his test results came back.  We discovered, a few days later, that he has a random, genetic mutation.  He doesn’t have a defined syndrome and his deletions and duplications are so rare that the doctors could literally tell us nothing about what we could expect for his growth and development.  We were, and still are, flying blind.

Cooper is now four and a half.  He’s been hospitalized 22 times, been in the ER 20 times (8 of those visits were in a six month period), and has had more than 10 surgeries.  He has 12 separate diagnoses, from chronic lung disease to infantile spasms, and we see 14 subspecialists.  It’s quite an ordeal.  

But Cooper is happy, and I’m thankful that Cooper is happy. Even though he can’t tell me that he is happy, the signs are all there. He smiles, he laughs, he’s ticklish, he gives the best hugs, he loves to snuggle. Plus, of all the consonant sounds he could make, the only one he says with regularity is mama.  I’m thankful to be loved like that.

In the midst of all this craziness, we decided to do something even crazier: I got pregnant again.  We found out at eleven weeks that we were having a perfectly typical baby boy. And my reaction to this news was that of terror.  I was just figuring out how to navigate the complex world of Medicaid, seizure medications that had to be ordered from other states, and early intervention preschools.  What was I going to do with an infant?  One that was going to be rolling over and sitting up on a pre-defined schedule?  How was I going to deal with an infant while going to bi-monthly doctor appointments?  And then, he was going to grow up!  He was going to talk, and have opinions, and throw tantrums.  I was definitely not ready for any of that.

But you know what happened?  I figured it out too.  And Semmes, my precious second son, did everything early.  He sat up at four and a half months, crawled just after six, and was running by a year.  At two, his vocabulary is huge.  He knows all his colors, most of the letters and numbers, has memorized countless books and songs, and loves his big brother.  He’s in the helping stage.  He wants to help give Cooper his nasal spray, he loves sitting next to Cooper and “reading” him a book, and if you ask him what Cooper says, he says, “mamama,” just like Cooper.  

Cooper goes to school from 8-3:30 year round, so I get to be just a regular, old mom Monday-Friday.  And let me tell you, it is just as stressful.  Semmes tells me no when he doesn’t want to do something, throws huge, fall on the ground tantrums, steals toys from his friends (and cries when someone takes something from him), and in general behaves like a typical toddler.  He also gives kisses if you’re sad, yells “Hold, mama” when he wants a hug, and is just so sweet.  

I love my life and I love my kids.  Is my life exactly the way I pictured it when I was younger?  No.  But I have come to realize several things about being two moms:

1. We’re not super heroes.  The learning curve for a special needs mom might be steeper, but we’re just doing what all other moms do: figuring out how to do this mom thing the best way we can and doing what is best for our child.  

2. A good support system is the best thing you can have.  Thankfully, my husband is a pediatrician, so we have been surrounded since the time of Cooper’s birth by an amazing team of doctors that love Cooper, and us.  None of our family lives in town, or even in the state, so I’ve been so lucky to find an amazing group of friends that I wouldn’t know what I would do without.

3. I’m thankful that Semmes will grow up with a sibling with special needs. I hope that it makes him more empathetic, more willing to stand up for those that are weaker or have less. I think that some of the life lessons he will learn from Cooper may not be easy ones, but I’m glad that he will get to learn them just the same.

My life is filled with more laughter, love, and joy than it is with struggle and pain. So I call that a good life.

Not all who wander are lost

That title is a cliche in many ways, but it is so true of toddlers. I think one of the best parts of being a parent is getting to see the world from the point of view of a child. Everything is new. Everything is exciting. Everything is fun. Semmes is happiest when he is outside, exploring something new. And his excitement is contagious. When you hear, "look, mama, ants!" the ants stop being pests and become something amazing. 

I've become friends, of a sort, with the garbage men that work in our area. I'm constantly pointing out school buses, firetrucks, trolleys, and excavators as I drive. "Semmes, don't put that rock/stick/pinecone/etc. in your mouth," is said often. And it's all fun. 

Every experience is new again. It's been so great getting to learn the world all over again. And Semmes, don't listen to me about one thing: stay off the trails. Life is much more fun when you go off-road occasionally. 

Conversations with Semmes

Semmes is at the point, talking-wise, where he can have very basic conversations with me. He doesn't really have a whole lot of new stuff to offer, but he can repeat things, answer yes or no questions, and seems to really take everything in. Here are a couple of examples of conversations we've had over the last few days.

Semmes got Corduroy goes to the Doctor last weekend in Memphis. He loves it and has memorized the whole thing. The other day, out of the blue, he says, "Mama, I want to get a shot."
What?! I'm thinking to myself. Obviously, he has no idea that a shot hurts. "Why do you want to get a shot?" I ask him.
"I want bandaid," re replies. Of course, such a logical reason to want a shot. I tell him that the next time he goes to the doctor he doesn't have to get a shot; he's finished until he's four.
"Want bandaid."
"I'm sure you can still have a bandaid when we go to the doctor."
"No. Shot then bandaid."
"Oh," I say, remembering he still has to have a flu shot in the fall/winter, "you will have a flu shot in a few months and you can have a bandaid then!"
"OH! OK!" Never thought I'd have a kid so excited to be getting a shot. Hope this actually lasts until then!

Today, we went to the dinosaur exhibit at the Clinton Library. Semmes got to pick out a small dinosaur to take home with him. He chose a black triceratops (which is currently in the crib napping with him). I was putting him down for a nap and asked him what color his new dinosaur was.
"Black."
"That's right. What kind is it?"
"Triceratops (in kid speak)."
"Good! Did you know that they eat plants."
"OOOHHH (I wish I had recorded this sound)!! Dino eats plants! Dino loud! Dino roar roar (roar roar??)!"
"Yes, your dinosaur was loud. It roared."
"Red dino (at the museum, all the dinosaurs had different colored lights on them) say roar roar too! So loud!"
"What is the red dino called?"
"T-Rex."
"That's right. He eats meat."
"My dino eat plants."
"Right."

And then I put him down for his nap. That kid. He's hilarious.

Shut up about the "mommy wars"

Dear media, I know you really like to talk about the "mommy war." That thing where every type of mother hates every other type of mother. But really, shut up. There is no such thing (or if there is, I've never experienced it).

Here's why it does not exist.
1. No mom has enough time or energy to worry about what some other mom thinks or is doing. Unless they're asking for help or assistance. And then every mom I've ever met will give you all the advice and help you could ever want.
2. There are no "types" of moms. Yes, some moms work and some don't, some moms exclusively breastfeed and some only do formula, etc. But most moms do whatever they can to make their kids happy and kinda sane. At some point, I've tried things with my kids I never would've imagined. I've washed my cloth diapers in grapeseed oil extract, I've used coconut oil on a diaper rash, I've used tons of buttpaste and disposable diapers, I've bottle fed, I've given my kid formula, I've given my kid breastmilk from a bottle and from a breast...I've done it all. I'm not crunchy, I'm not holistic, I'm not a firm believer in everything my doctor (or husband) says, I'm a little bit of everything. If something is going on with my kid, I will try pretty much anything to fix it.
3. I'd rather have an open dialogue with another mom than a fight. The other day, a mom friend and I were talking punishment. She uses time-outs because they work for her. I don't because it's not really my thing. That was it. There was no war. No one tried to convince the other that they were right. It was a statement of facts, a revelation of our truths. Do I think she's wrong and I'm right? No. I think we're both right, even though we're doing two different things, because we have two different kids. And thank goodness for that!

And I don't think I'm in the minority of moms who feel this way. So can we just drop it now? Thanks.

Wheelchair

In the next week or so, Cooper will be getting a wheelchair.  And, while this is super exciting for Cooper, it means that I will have a child in a wheelchair.  And that's a little painful, if I'm being perfectly honest.  Things are about to get a little selfish up in here, but I'm a real person with real feelings that are sometimes ugly and not always correct, so deal with it.

In our culture, wheelchairs almost always have the negative association of "handicap," so much so that there's a whole "handicapable" campaign to disspell this belief. I don't want to have to defend Cooper.  If he's in his cool stroller thing, and we're just walking along, it's easy to imagine that Cooper is just a "normal" kid, but with a wheelchair, it will be obvious, even from a distance, that Cooper is far from "normal." I know, I'm being whiny and selfish, believe me, and I know that he will hopefully like it and be motivated to use it himself, but still...it kinda sucks.

I know that Cooper has no idea if someone looks at him funny or makes an ignorant comment, but I know.  And I somehow feel that having Cooper in a wheelchair will draw more of those looks and elicit more of those comments.  And I just don't want to deal with it.  I don't want to be nice when people are stupid.  I don't want to pretend not to notice that you're giving my child (or me) pitying looks.  I just don't.

But Cooper's physical therapist is super excited.  Brad is super excited.  And I will pretend to be super excited too.  Because, no matter what, he's my little guy.  And at the end of the day, when he snuggles up to me and says, "mama," I just melt and give him my heart all over again.