See Christian and Lola's ISR video!

Tuesday, August 28, 2012


Last week we had Christian's annual check up with his pediatrician. I kind of like this appointment because it's so benign and...normal. Just like all the other kids who turned four, Christian got his four year check up, too.

I was relaxed going into this appointment. But in the back of my mind sat the issue of weight. Did he gain enough?

Gaining healthy weight is a concern for most parents but when your child is fed through a tube, it becomes an entirely new beast. And then when you make the decision to start a blended diet, it's put up or shut up.

Why so dramatic? Well, I think doctors, specifically GI doctors have this attitude that if we are not going to follow their orders or recommendations - the status quo - well, then have at it, crazy parents! At this point, we as parents set out to prove that we've got this! We know what we're doing. But it becomes very complicated with a child with special needs. Because we rely so much on medical advise, when we decide we want to take things into our own hands, there is a need to prove we know what we're doing. 

So when I set out to do the blended diet, I was dedicated, I tried to learn as much as I could, but it didn't prepare me for what happened in the beginning. He immediately lost weight. The former GI doctor was concerned. Hell, I was concerned! Kids aren't supposed to go backwards in pounds, they're supposed to go forward. The GI doctor told me I could never match in food calorie for calorie what I could give him in formula. It was "complete nutrition." Yes, he used the word never. And complete nutrition. I mean with that kind of reasoning, why aren't we all drinking cans of vanilla flavored formula. Sounds delicious, right?

Anyway, I freaked when he lost weight. I took it completely personally. I was, after all, directly responsible for his source of food. I chose the food, I blended it, I added the calories, I fed it through the tube to my son. So I was responsible!

Then I heard weight loss tends to happen initially when switching from formula to whole foods. That was comforting, I think. But when exactly was he going to start gaining again? I mean, with the occasional bouts of throwing up, the initial weight loss, how was this going to remedy itself.

And then it did. I can't remember when, but eventually I stopped worrying. I just kept adding healthy oils and fats along with the rest of his balanced diet. I made him food like I would make any normal four year old food and we kept moving forward.

As I mentioned, Christian's four year check up was last week. The time came to weigh and measure him. I knew he had to have gained because he felt heavier. And then I got the numbers.

34 pounds and 41.5 inches. That's a gain of four pounds and five inches in one year, Ladies and Gentlemen.

Ah, vindication, you are so sweet.

Not only did he have an appropriate weight gain but it was right along with his curve. I was elated.

So there you go. My boy is growing just fine.

And today was picture day at school so it was only fitting that he would wear a new outfit. A button down shirt with a collar. Since he was too handsome to let it only be seen by me (and his school, of course), I decided to snap some pictures while we were bouncing on the yoga ball.

I wanted to get some pictures of him lifting up his head since he is so great at it on the yoga ball. I had to practice my acrobatic bouncing Christian on the ball while snapping photos on my phone skills.

I think I may have captured my favorite picture of Christian. Ever.

This might just look like yet another picture of my handsome son. It's more than that to me. I prayed every day and every night for two years to see happiness in Christian's face. Just a smile, a facial movement, an eyebrow twitch, something. Anything.

I can't stop looking at the picture. I see happiness. I see joy. I see - Mama, look! It's me! I'm here. I know it's taken me some time, but I've always been here and little by little I'm coming out. You'll see, Mama!

The picture above is not just something.

It's everything.
Thursday, August 23, 2012

Orange jacket.

We just finished up Christian's second week of school and he's doing pretty well. There is an extra day this year so now he is attending four days a week. He is a pretty tired little guy at the end of his week.

As Christian is getting bigger, it's more and more obvious that he isn't like the rest of the kids that go to school. Especially when he is a brand new four year old who looks like he's much older!

Christian gets a lot of stares, which is fine. That doesn't bother me. Kids are unconditionally curious. And more than once we get unfiltered, honest questions from the mouths of babes. The number one question is: What's wrong with him?

My brain always stumbles with this one. How much information do I give? Is this two minute meeting with a small child at school really a moment to teach about the ramifications of brain injury or the importance of pool safety? No. So I don't really know where to start. Good thing small children need only simple answers. Although, sometimes those are the hardest to come up with, I've had some practice in the last two weeks.

I usually start with saying that Christian's brain is different than their brain. I say that it doesn't allow him to walk or talk but he can still understand everything. Then I tell them his name is Christian and he is four years old. Sometimes that's enough of an explanation and sometimes I get, "But, why is it different?" This is a moment where I just wish I could say, "Because he was born like that."

Those kids...they teach you something every day, even if just in passing.

Remember when I complained about kids being cruel and mean at the end of last school year? Well, kids can be pretty awesome, too.

Yesterday, while pushing Christian to the car and leaving for the day, we passed a little boy, no older than six. He was alone and probably walking back to his classroom from lunch. He had a very bright orange vest that indicated he had been given some important assignment to lead his class. When he saw Christian and me coming toward him, he stopped in front of us, approached Christian, and gave us his miniature version of an interrogation.

Orange Jacket: "Hey, what's wrong with him?"
Me: "He just has a different brain than you. But his name is Christian and he's four years old. He goes to school here. What's your name?"
Orange Jacket: "Matthew." (Smiles.) "Why he can't walk?"
Me: "Because his brain doesn't let him."
Orange Jacket, peering at Christian and getting closer to him: "Does his eyeball sometimes go to the side?"
Me: "Yes. Sometimes he likes to look to the side. Say hi Christian."

Let me just interject and say that Christian can be totally in tune with kids in his age group and will reach out to them. So when I was telling him to say hello to the little boy he was reaching out toward him.

Orange Jacket: "Hi, Christian!"
Me: "Look, he's trying to say hi to you. He's trying to grab you."

And then Orange Jacket puffed out his orange jacketed chest and moved it forward so Christian could get him. Boom. Acceptance. He would play along. It was decided.

Me: "You got him, Christian!"

And then Orange Jacket got close to Christian so they were face to face and yelled, "You got me! You got me! YOU GOT ME!"

We said goodbye and Orange Jacket ran off to his classroom.

I never know how to answer impromptu questions that come from adults or kids. But I'm learning and I'm sure I'll get better at it. Funny this happened yesterday because my friend posted a link to an article about how to ask questions and how to answer them about being in a wheelchair. (Jenny, you must've been reading my mind.)

How to Answer: Why are You in a Wheelchair?

Thursday, August 16, 2012

Make you see.

I'm not a fan of doctors appointments for Christian, you may have noticed.

Mostly because I go into it with opposing emotions. Part of me wants the doctor to see how much Christian has grown. I want the doctor to see that he can communicate, that he can be interactive, that he will look at you if you talk to him.

On the other hand, the opposing emotion, worries that he won't show them what an awesome kid he is. They won't see it. They'll see a patient. A four year old boy with severe brain damage that won't look at them when they say his name. And, although they try to look as detached and clinical as possible, I can see it. It's the hint of devastation they feel for us. They don't see who Christian is.

So on one hand I look forward to these appointments, but on the other hand I dread them because they tend to cause me this weird anxiety and I couldn't seem to figure out why.

I also feel the same emotional opposition when strangers first meet Christian. I wonder what they'll think. Will they be able to hide how they feel? Will they look sad and devastated? Will Christian make eye contact? Will he give them what they want when they say his name? Will he respond?

Then I read a friend's blog about her daughter and she hit the nail on the head. The anxiety, those opposing emotions, come from the desire to make them see.

I want to make the doctors see him. I want them to see he speaks with his eyes. He communicates with his grunts. And when he is interested in something, he looks.

I want new people to see that he isn't this child in a vegetative state, staring off into space instead of responding to their enthusiastic hello. I want them to see he is really in there.

I think if I'm being really honest and digging deep down, I constantly feel the need to prove that he is worth it, that he deserves to be here, that he was worth saving, and that if you give him a minute, he'll show you.

But, alas, most people won't see. Doctors and strangers only spend fleeting moments with Christian. And I've discovered something about my boy that I suspected a while back. He will not engage if he doesn't know you.

We went to our neurology check up a few weeks ago. These are the appointments I really want him to perform and show off everything...anything...he can do. And he never, ever does!!!

We were in the room waiting for the doctor, I was talking to Christian and showing him my phone. He likes smaller things with light, so anytime I hold my phone up, he pays close attention. I flipped through pictures, having his attention the entire time. I put the phone down and he grunted in disagreement so I brought them back and he stared at each picture as I flipped through. Colorful light and bright smiling faces of his sister, and handsome pictures of him. He was fully engaged.

Then the doctor walked in.

And Christian shut off. He turned his head to the side and powered down. He would not show off. He would not engage. Christian had left the building.

I didn't say anything to the neurologist about how he was just fully engaged in the viewing of pictures on my phone, tracking each one carefully. No use. I would then be seen as the crazy mom who sees things that aren't there. We talked, kept it pretty clinical, they asked how he was doing and I said great and I'm sure they were like - Yeah, okay, lady.

I always leave those appointments thinking - Why don't they see? How can I make them see that he's this completely awesome kid if you just give him a second? Oh, well. It's always slightly anticlimactic and equally disappointing.

Then we started school. The second day of school he seemed tired. When I walked in he was checked out, turned to the side, but when I started talking to him, all of the sudden Christian was back and listening and paying attention. The OT even said that she couldn't figure out what was wrong and wondered if maybe he had stopped tracking over the summer. But then saw that he just didn't want to participate! Because when I showed up, he was looking everywhere I was. Stinker!

So what I've learned is that if he doesn't know someone, if he's in unfamiliar surroundings, or even just tired, he will shut down and won't engage. It's not that he can't. It's that he won't. What a little stinker!

But here's the thing...if you give him a second, if you get to know him, he's in there. He has an opinion. He'll look at you. He'll engage. He'll make you see.

Aaaand he's looking at the phone again.
Sunday, August 12, 2012

Saying goodbye to Car Seat.

Christian not only turned four years old recently, but he also started back at preschool last week. He did great and got right back into the same schedule. He has the same teacher and aid and even some of the same friends from last year. It actually feels like we never took a summer break.

Turning four is a big deal. No longer a toddler, no longer a baby, even though he's still my baby. Four is like an initiation into kid-hood. He is a kid now and with a kid birthday under our belt and the first week of school finished, it's time for some good ol' reflection.

When we were cleaning up for Christian's party, I had to sort through the clutter and toys that have accumulated in Christian and Lola's room. There was also a collection of equipment - a high chair, a play yard, a car seat, a stander, a corner seat, a tumble form - all things I have to make a new home for. All things that are part of Christian's babyhood.

I would keep them all if I could. But we don't have the room. I don't want to let them go and I feel like I belong on an episode of Hoarders. I know they're just things, but when I look at some of those just thing I see Christian.

Getting rid of Christian's babyhood is very difficult when it comes to car seats and play yards.

That car seat, in particular, is Christian's babyhood. I remember so well my fixation on finding a new car seat for him. He was about to turn one and had hit the weight and height limit on his infant car seat. I researched brands and prices, I talked to his pediatrician, I asked other moms, this was part of motherhood. Obsessing over a car seat. That car seat finally came and it was ready for baby Christian to use. I remember being so excited that it had cup holders for his future apple juice.

He got to ride in that car seat one time before the accident. Actually, I think it was that very day.

That wasn't the end of the car seat's journey. In fact, it was still brand new and perfectly acceptable for a 12 month old baby with a brain injury so Christian rode in that car seat up to Hacienda, he rode in the car seat to hyperbarics and back to the hospital for four weeks. He rode home for the first time after his accident in that car seat. And it became his. He rode in it during road trips, he threw up in it, he ate in it, it was a good car seat. We never got to use the cup holders for apple juice so we tucked those in and forgot about them. Christian used the car seat until he was too big and needed a bigger seat.

Which brings us to last week. It was time to part with the car seat. I didn't want to. If it was up to me, I'd keep it forever. A stupid car seat! I would stare at it like a shrine. It's a symbol of how much harder it is to move on from babyhood where things were easier. With Lola, I miss her babyhood but I know there are more stages to get through, she'll have accomplishments and recitals and first dates and everything that makes saying goodbye to baby things worth it.

But saying goodbye to Christian's baby things is hard. Damn hard. Not that he won't have recitals and accomplishments, but looking back to his babyhood means thinking about a time where ignorance was so very blissful, even post accident.

So I finally got the car seat ready, loaded it into the van, and there they were - the stupid cup holders. I drove his car seat, the one I took so much care in choosing, to the Goodwill. I took the long way and thought about how many other stores I could go to first that might distract me from dropping it off at the Goodwill because then maybe I wouldn't really have to give it away. But there I was, at the Goodwill, leaving it there. And I actually got sad.

It's just a car seat! It's just a thing! It's not Christian! Christian is at home peacefully sleeping. What is your problem!

I put the car seat down and the Goodwill employee came out to ask me if I needed a tax receipt. I said no really quickly and turned around to get in the car. Do you know that I looked back to see if the seat was still sitting there? It wasn't. It was gone. He took it right in without even a last glance. Which is good, because I might have turned into a crazy mess of a Mama, stopped the car, and insisted I take it home where it could stay with us forever for no good reason other than that I just didn't want to part with it.

I drove home after that feeling a little quiet and maybe a little sulky. But I had a birthday party to get ready for. We had an amazing fourth birthday party for him. See, he's a kid now.

Goodbye messy car seat with the cup holders. Thanks for always holding my baby safe. Even with your stupid cup holders.
Monday, August 6, 2012

RAWR!!! It's Christian's 4th birthday party!

Happy Birthday, Christian!

We had a dino-riffic birthday bash for Christian yesterday to celebrate his 4th birthday. Yes, that's right, he is FOUR YEARS OLD!

This year I was really excited to throw a birthday party for Christian. I didn't last year and I regretted it. So this year I wanted to make it special and fun and perfect for Christian and his buddies.

Birthday parties for children with special needs can be challenging. Even I can admit that it's hard for me to picture Christian sitting there while everyone else is carrying on, kids are running around, everyone is going about their business. How exactly does that include Christian in his own party?

And I hear about the heartbreak of classmates of other children inviting everyone in the class but not inviting the child in the wheelchair. Or only inviting the child with a disability because it's the polite and politically correct thing to do. Then it's awkward. And how can they participate? When you have a child with special needs, birthday parties, in general, become a sore spot.

So for all of the reasons above I really wanted to put my heart into this party and make it something Christian could be a part of, not just because the party was because of him, but because he could really participate in the celebrating. And I wanted that for his friends, too.

We planned this party for them. Just for them. No other big kids would be running around, swiping things, bumping into wheelchairs, only little brothers and sisters. Nobody would be left out and everyone would be included.


Before we get to the fun, take a look at the spread!

*Dino Bites - Candy coated marshmallow, candy eyes, and Sour Rips for their spikes.

Food for herbivores.

We also had food for carnivores and sweetivores, too. Remember? Nobody gets left out! Even those ont he dessert eating diet are included.

There was also a supply of "Dinosaur Food," which were bags of little humans (Sour Patch Kids) and red fish (Swedish Fish).

And Daddy made this spectacular volcano cake. There was even smoke coming out of the top.

Daddy also made steamy Swamp Punch.

On to the activities! Think's a dinosaur dig! No shovels needed!

I had all of Christian's buddies over an hour before everyone else so they'd have plenty of space and the whole party to themselves for a bit. I hid small dinosaurs in buckets and shallow boxes of sand so the kids could feel around and "find" them. (Side note: Sister went through and found all of the dinosaurs right before the activity. So we had to re hide them. Lola!)

Christian digging.

Lucas wasn't so excited about this part.

Quentin kind of liked it. But he's the oldest and probably way too cool for all of this dinosaur digging.

Lola found a dinosaur...again!

So did Kenadie!

Digging for dinosaurs.

Then after our dinosaur dig we made fossils out of clay by pressing the dinosaurs we found into the clay and drying them in the sun. I wish I would have taken more pictures of this but I was helping Christian and Lola with their fossils. The picture of the very busy fossil...yeah, that's Lola's. Her dinosaurs were fighting and stomping all over the clay.

Even though it was 100 degrees, we had a giant Jurassic Park jumping castle in the back yard and it was going to get some use. Yes, it was hot. But if there is any way any child can participate in a party, it's by going in the jumping castle!

Christian doesn't look happy here but he actually didn't mind it at all. We bounce all the time on the yoga ball so he's used to it. But it was hot! So it was time to get out.

This is Christian's birthday crew!
Quentin, Lucas, Christian, Nic, Kenadie, Lola, and Zac

I just noticed they're all kind of looking toward the cake. I guess we better sing happy birthday!

Happy birthday to you!
Happy birthday to you!

Look at the cake, Christian!

Yes, he tasted the cake and got a cupcake in his blend last night. Lucky dinosaur.

All this fun can really tire a kid out. Time for a nap.

We had family and friends come and I was happy and thankful for the people who came, participated, and celebrated my baby, I mean big boy.
All the kids got to take home their fossils and dinosaur food. I couldn't have been happier with the party. Mostly, I was just happy Christian could participate and enjoy his own party and that he could share it with his buddies.

All together now...RAWR!!!

*Dino Bites, printables, and dinosaur inspiration from Pinterest and The Holiday Snob.
Wednesday, August 1, 2012


A certain terribly handsome boy is four years old today.

I love birthdays. I get excited for my own birthday every year, which I really should get over, but I still do, ever since I was a kid.

I'm especially excited for my kids' birthdays, and exponentially excited for Christian's birthday. They are kind of like my birthdays, too. And each birthday Christian gets is a bonus, in my opinion, which makes them extra special.

We're really lucky in that we only had eleven months after the day he was born to enjoy the old Christian. They were eleven beautiful months but the gift is in the fact that we didn't fully get the opportunity to know and love the little boy Christian was to become. While it's sad, it's also a gift because we know and love this Christian and I can't imagine him any other way. This is who he is and it's easier to accept him as the four year old he will be tomorrow instead of the four year old he would have been.

I can't imagine him any other way, because I won't. It will hurt my heart a little. I don't get sad watching other four year olds run and play or hearing about what other four year olds are getting for their birthday. I'm just so far removed from the life of a typical four year old that the protective defense mechanisms go up, I filter, I emotionally check out, and we keep it moving.

But sometimes those "what ifs" find a way in. Hand in hand with grief, they sneak in through the cracks you didn't know were there.

I was looking at ideas in the party section at Walmart for Christian's party on Sunday. The theme will be dinosaurs. He has a hard, bumpy, blue dinosaur, you've probably seen in pictures on the blog, that he grabs for and seems to really like, so it was decided his theme would be dinosaurs. That's a four year old type of thing, right? Anyway, I was walking through the party section looking for dinosaurs and saw all the characters...Cars, Toy Story, Batman...

And that's when it sneaks in. I wonder what would he be like? Which character would he like? Would he be obsessed with Cars? Or would he like the dinosaurs we've decided he should like?

Just like that it's time to shut it off. You are not aloud in, you sneaky, sneaky thoughts.

Who knows what he would like? I was reading a blog post over at Avi's Page and Jen wrote something about projecting our own grief on to our kids.

The thing is it doesn't matter what he would like. It matters what he likes now. Maybe we're projecting our own grief and insecurities onto Christian. If we are sad because we think he wants to run and play with other kids like him, maybe he could care less about that. Maybe he isn't unhappy at all. Maybe he is just fine with dinosaurs and being held and sung to. That makes him happy. And if he's happy, we should be happy.

Know what makes me happy?

I was drinking my coffee this morning, reading through emails and Christian was still in bed. Lola wandered into their room to play and it was awfully quiet in there. So I decided to go see what she was up to and say good morning to Christian. And what did I find? Lola, in Christian's bed with him. His hands and arms reached out for Lola while she played next to him. Best wake up ever. Better than coffee, even.

Today (and Sunday, too) we celebrate! Christian is four and typing that just made me smile.

Happy birthday, baby! I love you!

This song is perfect for you, Christian!

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