See Christian and Lola's ISR video!

Sunday, December 28, 2014

Catching Up

Yes. We are alive!

We survived the holidays and now we're spending a lot of much needed "do-nothing" time. 

But let me catch you up...

In August I got to see some of my fellow Near Drown Tribe Mommas! Looking beautiful and strong as ever!

And then...AND was Halloween.

And you know how we do Halloween!

Christian gets a lot of attention and a lot of staring because of his wheelchair and the way he looks. But on Halloween we get a lot of stares because everyone wants to know about his costume! All the kids want to walk with him, they come up and say hi, his wheelchair costume is a real conversation piece. As a matter of fact, maybe we should have a wheelchair costume year round. It really makes people feel comfortable talking to Christian and talk to us. Hmmmm....

Christian was a Florida Everglades Park Ranger. Gramma and Grampa got him a little park ranger uniform last year from Florida (hence, the specificity) and so it only made sense to get that boy a jeep!

Christian also gets to participate in Special Olympics with his school. And he participates in the bowling portion.

He's a pretty happy boy. Mostly unimpressed with a lot, but happy nonetheless.

He's still standing!

And he and sister are best friends.

A few weeks ago we went to Disneyland for the first time during the holiday season and it was magical! It was our first time back since Disneyland changed the rules of accessibility. They were still just as accommodating and we still had a separate entry in most of the other older rides. But for the new rides in California Adventure, we did still need to wait with everyone else because the lines are considered handicap accessible. Otherwise, we could get a fast pass and come back later. It was fine and it all worked out. And it truly does weed out those who don't really need handicap accessibility. 

With all these excursions and the trip to Disney I think what makes him happiest is hanging out at home in jammies or in Mom's bed all day snuggling. He did get sick a few weeks ago and I was really worried about it because it was probably caught from me and sister. And it hit us really hard. So when Christian had the fever and signs of laryngitis I'm not going to lie. I was scared.

But this kid...he got the fevers, sounded hoarse, got sick, but then bounced back in record time! I swear by my apple juice flush! As soon as I see signs of sickness I hook him up to the pump for a 24 hour continuous drip of apple juice, Gatorade, and extra water. Apple juice for a few calories and Gatorade to keep hydrated. No blends or regular food. I run this for about 2 days. And I swear it works every time. Colds that would drag for 1-2 weeks are in and out within 3-4 days. 

And then I have a happy boy again.

And I think this might have been Christian's most active Christmas morning. I would hook his finger into the fold of the paper and tell him to pull and he did! I think he really liked it and I can't remember a Christmas where he was that active.

Christian has been out on school break and we have caught up on a lot of snuggle time. It amazes me how much of a silent connection we have. His favorite place to be is in my arms. 

Merry Christmas and Happy New Year!!!

Thursday, August 7, 2014

Turning Six, Starting First Grade, and Riding the Bus

Our lazy summer is over!

Christian is back at school and just started the 1st grade on Monday. More on that in a second.

FIRST, I have to announce that someone turned SIX YEARS OLD last Friday!

Whenever Christian's birthday comes around I try to think outside of the box a little. I don't really like traditional birthday parties for him because he doesn't really get the full enjoyment out of them like we do. We had one birthday party for him a few years ago where we did all sensory stuff with some of his buddies and that was really cool but I can't repeat that every year! 

Of course, I did make him a cake and have family over on his actual birthday. Because everybody needs cake on their birthday. EVERYBODY. 

So this year I decided we should go on a staycation. Because we live in a very hot place, all of the local resorts and hotels offer really low rates for the summer because nobody in their right mind would consider visiting here during the hottest months of the year.

I also wanted Christian to be able to sit in warm water. Even though it is really hot here, all of the pools are still cool. Obviously, so it's refreshing. But Christian doesn't like it. He stiffens right up and gets goosebumps everywhere. So I booked a place that had several hot tubs.

And it was so nice! I'm so glad we did it. As soon as I took him into the hot tub he melted. He just loved it! It was the perfect birthday celebration. It even rained while we were in the hot tub and he didn't even care. He was in la la land.

After the birthday staycation had come to an end it was time to get ready for school! It wasn't going to be such a transition because his kindergarten teacher moved up to first grade with him and so did a lot of his classmates that already knew him. Last year I decided to make a "Meet Christian" booklet to read to the kids on the first day of school. I wanted to let the kids know about him, what he likes, his wheelchair, his g-tube. Nothing fancy, but I didn't want the kids to be afraid of him. This was his book from last year.

There were a few other pages that told the kids his favorite colors, his favorite toys, and about how he eats through his tube and tastes with his mouth. 

This year I made a new booklet all updated for 1st grade.

I forgot to take a picture of the finished product but his aid read it to his classroom.

Aaaaand, Christian is now....TAKING THE BUS TO SCHOOL AND BACK!

I feel like he's so independent now.

Yeah, so that was a big step.

It has gone well, though. His teacher texts me a picture of him when he gets there so I know he made it okay. He seems unfazed by all of it. Like he's an old pro.

And all of this - the birthday, the staycation, starting school, and riding the bus - it all happened within the last week!

No complaints, though. Just excited for Christian because he loves being around other kids and I know he's happy seeing his aid and his old buddies.

Here's to a happy school year!

Tuesday, July 8, 2014

What Five Years Later Means Today

It's quiet here.

Coffee is half full. (I'm an optimist.)

Lola is asking for more Lucky Charms. (I know, I know. But she's content. I'll make her all natural smoothies for the rest of the week to make up for it, okay?)

Christian is watching TV. (Yup. Just checked. He hasn't turned away so he's still watching and engaged I think.)

He yells.

Lola - "Mom, I hear Christian singing. I think he's singing along with the cartoons."

I hear him, too.

This is what five years after a drowning looks like. This is what five years after the worst and best day of my life looks like. This is what five years after thinking I may never be happy again looks like.

This is us. We've reached normal.

To be honest, we've been at a normal for a while. It's a fine place to be. We obsess over stupid, unimportant  irritants of everyday life. I fuss about stains on my carpet. We discuss whether the monsoons will hit not because it reminds us of that day but because we are genuinely concerned for our water hungry trees in the back yard. And because monsoons are pretty awesome. We binge watch our favorite Netflix shows and whine about work. I mean, I whine about work.

These are all of the things normal affords.

It was five years ago today that my son drowned. He was eleven months old. Not even walking. He was too nervous about taking the first step. So he'd stand and bounce until he sat down and crawled to his desired destination.

His desired destination that day, five years ago, was the pool. I closed my eyes for what seemed like just a minute. I let my guard down for what seemed like just a minute. And the next sound I heard was my older son saying Christian had gotten out...pulled out of the pool...laying lifeless...totally white. There was dead silence. It was like all the people in the whole wide world had disappeared and I had no idea what to do.

He had no pulse and no heartbeat. The hospital called us in to "be with him." Nurses ran out of the room crying. It was a nightmare. A fucking nightmare.

I went to my little boy that day and I put my hand on his little chubby leg. There was so much going on. People rushing. The whining of a flat pulse ox. They were about to call his death. I said Christian's name. And then there was a pulse. Then there was life.

He drowned. He didn't nearly drown, although that's what we call it so people will understand. But what really happened is that he drowned. He died. And then God sent him back. Or he came back on his own will to live. Or both. Either way, it was miraculous.

I'm honest here about what happened. Five years later in the corners of my heart and my brain there is still grief and guilt and I'm not sure that will ever go away. I always had fierce opinions about what it meant to be a parent. I was a breastfeeding advocating - attachment parenting supporting - daycare loathing opinion machine. I always believed I was born to be a mother ahead of anything else. I judged other parents harshly and swiftly. Nothing would ever happen to my children because I watched my children. I watched them and cared for them and loved them too much. Surely they'd be safe. Especially if I judged other parents. That would for sure make my kids safer.

Until it didn't. And something near fatal happened. And then I was the person who was judged. Rightfully so, my old self would say.

If I've learned anything in the last five years, it has been compassion. We hear of children drowning all of the time. And we scream, "Watch your kids!" because it makes us feel safer. Christian wasn't playing by a pool. He didn't accidentally slip under while I wasn't paying attention. He got out of a house that I believed a crawling baby couldn't jailbreak. I was so wrong.

As another near drown mom said perfectly, ask yourself - have your kids ever been alone in the house long enough to draw on the walls? Make a huge mess while you were tending to another child? Hide from you thinking it was a game you didn't know you were playing? What is your child doing while you're posting in comment sections about the irresponsibility of other parents? That's about how long it takes for catastrophe to happen.

We didn't get out of it unscathed. Christian is a different child, yet the same boy. Baby pictures of him will always be bittersweet. I will always look at them with sadness, as if that baby died. Because he kind of did. We had dreams for that baby. We walked on the beach while he was still in my belly and talked about how we would bring him there to play in the sand and soon he'd be walking with us with his little feet.

We just got back from taking the kids to that very beach over the weekend. I sat with Christian at the shoreline. He can't walk in the sand. But I helped him feel it. I thought about the plans we made for him on the beach and felt a little pain in my heart. But the pain was quickly squelched by gratitude. I would rather be sitting at the shoreline with him on my lap describing the waves and dipping his toes in the water than staring out at that giant ocean morning and missing him. That I know with 100% certainty.

My boy is here and alive. He is the cutest blond-headed almost six year old with big curls that grow out if I let his hair go long enough. Everyone who spends time with him loves him. He teaches the world, the doctors, the skeptics not to count him out. Thank God he's healthy. He's content. He makes happy sounds and annoyed sounds. After two years of nonstop crying in the beginning he rarely cries now. Only if he's truly upset or hurt does he cry now. He loves to be snuggled.

I love Christian to a depth that scares me. Maybe it's because I have the acute knowledge that he could be gone at any second. He is my perfect baby. I see him as perfect the way he is. That doesn't stop me from wondering what he would be like. I'm not really into babies anymore but I have a weakness for baby boys with big heads like him. And I observe six year old boys as if it's something I've never seen before, like they're in a zoo, trying to process and understand what Christian would be doing.

Over the past five years I've changed. I'm not as patient as I'd like to be. I think everyone must think I'm so patient and understanding. I'm probably less patient and understanding than you realize. I'm not afraid of questions about Christian. I'm happy to teach. But I'm not as helpful as I'd like to be with new parents who are going through the same thing we went through. In all honesty, we've moved so far beyond that and I just don't really want to go back.

We are thriving in beautiful normalcy. We didn't get here alone. We have so much support from family and friends that helped carry us here and they show up every day. Whether it's through being physically present, sending an email, a message on Facebook, or just praying for us. They all help us stand and move forward.

Christian's journey isn't over. Our story still continues. It's one of faith, redemption, compassion, forgiveness, grief, pain, beauty, and hope.

To my forever baby.

I feel so strongly about ISR lessons for babies as young as six months old. Barriers of protection and supervision are key but ISR saves lives. When all barriers fail, ISR gives babies the instinctual skill to save themselves. If you are so inclined, please consider donating to the ISR scholarship fund so that cost will not be a factor in children obtaining this skill. To donate click on the link below. Donate in Christian's name.
Tuesday, May 27, 2014

Christian Graduated Kindergarten

Christian graduated kindergarten!

And it was such a big deal.

Probably really only to me. I know a lot of people think we make too big a deal about celebrations and graduations and kindergarten is hardly worth celebrating. Those people might think having a graduation for kindergarten might be too congratulating for accomplishing nothing but kindergarten - play dough, ABCs, and snack time. Big deal. Those people might think graduation ceremonies should only be reserved for completing high school or college. Surely not for little kindergartners smelling of graham crackers and sandbox.

I completely disagree.

My little boy graduated. And he had a ceremony and everything. We were there in the front row and leading up to it I couldn't help but remember almost five years ago the first night in the hospital when the doctors told us there was nothing.

We aren't transporting him unless we can get a pulse.
The EEG is flat.
He is probably brain dead.
We should consider letting nature take its course should, say, his heart start to give out.
We don't know if he'll make it the next twenty-four hours. 

And then I'm sitting there in the front row watching him receive his little graduation certificate and a token for a free scoop of ice cream from Culvers.

His aid, who loves him so much, dressed up just for him. 

Everyone loved and kissed on him. People I didn't even know but that had come to know Christian. He has got his own crew now. And when he finally received his lei like all the other kids and his aid, dressed up in her pretty skirt, wheeled him away, and everyone cheered. Even people in the back of the cafeteria. Other kids' parents came up to us when the ceremony was over just so they could say congratulations to Christian. 

I had tears but I didn't let them go. The ugly cry could have happened, and trust me, it was there beneath the surface, but I held it in. I didn't want to embarrass Christian in front of his friends, ya know.

No, it's not what I pictured. And seeing him sit in his wheelchair next to his friends - "peers" that are his age - a typical five year old is so foreign to me. See, Christian is like this really cool baby who likes to snuggle and makes baby sounds sometimes. Only he's five and big. So he's a big, cool, baby. But those kids in his class? They're That's what he's supposed to look like? There's no way. Those kids looked way too big. And active. And they probably smell like graham crackers and dirt.

The end of the year, as I found last year, is bittersweet. There's always a moment that pronounces just how not like the other five year olds he is. Last year it happened when we went to the zoo and all the other kids ran off and the other mom, running after them, chatted about play dates and what their kids were doing for the summer. We were on our own path. It became our own zoo trip, split from the crowd. Oh, yeah. I forgot for a second that we're different. 

I mean, obviously I know we're different. We live it every single day but little things will remind me. Not just the chair or the g-tube or the obvious things. But the little things that divert and separate our paths from the rest of the crowd catch me off guard without me realizing what's happening. This year it was watching him next to his friends - these active, ants in their pants five year olds. Oh, he's supposed to be acting like that? He's supposed to be that big, stand that tall? There's no way. I don't believe it.

Christian doesn't smell like graham crackers and dirt. But he smells warm and snugly. Like a big baby. And he had a really great year full of field trips and friendships just like all the other kindergartners. Even more so with his SPED class. 

What I know for sure is that he is loved. He is loved by all who meet him. He exists and he breaths and he smells like a baby. He smiles and adores his aid. He might not play in the dirt or eat graham crackers but I've picked him up from school with a red tongue from strawberry Eegees and he might still have some green paint on his toenail from a class project. He's part of that school and they embrace him and love him. He has done so well transitioning and tolerating a full day of kindergarten and next year he'll be riding the school bus! 

So my baby graduated kindergarten. And nobody can tell me it wasn't worth celebrating. We didn't think we would have this. However different it might look from what we pictured, he is here. He is alive. And he is totally worth it. 

First and last day of school.

Monday, May 5, 2014


I went to a funeral last week.

His name was Santana. He nearly drowned about seven years ago. After his near drowning he struggled a lot. Santana's was one of the first stories I followed.

Fresh out of our trauma, his story scared me.

Wait. You mean these kids don't fully recover? You mean they'll be profoundly disabled? Suffer seizures? Their bodies will transform and their faces will look different?

Not my son.

I thought.

Then my son was profoundly disabled. He had seizures and his bodies twisted and toned. His face looks different and somewhere along the way I realized there was so much about Santana that I saw in my son.

At first it terrified me. But after learning to love and accept my son as he was going to be it wasn't so hard. I went to meet Santana while he was sick in the hospital a few years ago. He had soft skin, warm from a fever. I wasn't terrified. I just felt connected in some strange way. Those big brown eyes - they were filled with life. It was a life of struggle but it was life, nonetheless.

His mom, Lindsey, and I have attended the retreats for near drown moms in Seattle. Over the years I watched Lindsey offer support to other moms and kids, no matter their ability, even though Santana had a rough go of it. Even though Santana suffered botched surgeries, long hospital stays, and crippling seizures, Lindsey still found it within herself to offer supporting comments to other mothers.

And when I met her in person she was so goofy and bubbly and fun! Although her life with Santana was full of pain and struggle, she managed to be all those things.

I waited over a week to write about Santana's funeral even though it's been brimming since. He passed away peacefully in his mom's arms after getting very sick and his body showed signs of shutting down. He was tired on this earth and it was time for him fly.

So I drove up to his funeral service. It was an unseasonably rainy and windy day. The service was held in a building of windows so we could see our beautiful desert. The windowed room was packed wall to wall, standing room only. Dress code was Superman shirts or the color purple for drowning impact awareness. There was a sea of Superman, Christian and I joined in our Superman shirts, as well. It was a sad day but there was hope in the air. Santana was free. I'm sure everyone in that standing room only building was visualizing Santana running free. It was surely not the end for him. It was just the beginning.

He passed away on the morning of Easter Sunday. The day of Resurrection. No better a day for such a Superman.

The service was beautiful. And after it let out everyone released purple balloons into the grey sky. There were so many! Santana had a motorcade escort to his final resting place. At the grave site I heard his grandmother whisper, "I love you so much," before she put a flower on his tiny coffin adorned with a hanging Superman cape. Through the wind and the traffic and the chattering kids, everything was silent in my ears except for his grandmother whispering.

You don't understand. You might think our life is hard, that these kids have such painful lives but they are filled with so much love. And if you think of all of the people out there who go through their entire lives feeling unloved and like nobody cares about them, isn't it amazing that these kids will never feel that?! They will only feel complete and unconditional love, no matter how short their lives might be.

I live in a world where kids die. I say this often, probably more as a coping mechanism so I can protect my own heart. And Santana isn't the only child like mine that has passed away over the last year. I think there might have been five more children and two that almost made the flight but decided they wanted a little more time here on earth. I'm well aware that Christian's life might be short. But, dammit, if he doesn't feel love and adoration every single day, every second of his life.

I was talking with a friend one day about this subject and she said, "Isn't it better to feel loved, even though your life is short, than to go through a long life never feeling loved at all?"

I believe with 100% certainty that Santana was loved every day of his life. And that funeral service, fit for a Superman, was filled with so much love and sadness and joy for his freedom.

I often wonder about parents who post really benign complaints on social media about their children having minor issues or fussing with really unimportant aspects of life. I wonder if they know what it's like to give your child's body back to the earth. To have to walk away. To be the mother of three, when on this earth there are only two children. Every family picture is missing a child. The observation about family pictures isn't meant to be shallow but to understand what it's like for a mother and a family suffering such profound loss.

I can also tell you that where Santana's journey ended, we were beginning ours. Pulling out of the church and into the motorcade I noticed right across the street was where Christian had his first HBOT session three weeks after his accident. The irony was not lost. And I don't know if irony is the right word. Coincidence, maybe? It was sobering. But all of our journeys start and end somewhere, don't they?

Santana's journey was filled with love. This I know for sure. There were hundreds of people in attendance, including some of my near drown moms! From Las Vegas, from Oklahoma, from Tucson, we came from all around and when the service ended we waited for Lindsey. These Mamas right here are the strongest I know.

And sweet Santana, you touched so many lives. You were one of the OGs! Now everytime I see someone with a Superman shirt I think of you. Everytime I brush a tiny mohawk into Christian's hair, I think of you.You paved the way for some of us and for those that might unfortunately come into this world. I know you are playing and laughing and watching over your family. They are blessed by you. We all are. 

"I would rather have thirty minutes of wonderful than a lifetime of nothing special."
-Shelby, Steel Magnolias

Sleep softly, Santana.

Thursday, March 27, 2014

Am I the only one who thinks IEP meetings aren't terrible?

We attended our annual IEP meeting Tuesday.

Am I the only one that doesn't think they're terrible, horrible, stressful meetings? Maybe it's my nature. I don't know. Maybe I would feel differently if I was going to meet up with a bunch of neurologists and doctors every year. That would be seriously depressing.

But IEPs? They're actually not bad. In fact, they're borderline enjoyable.

I think this is true because first, and most importantly, I truly believe his team at school - his teacher, therapists, administrators, his SPED teacher and his aid - all care about Christian a lot and they all want to see him succeed and thrive. Going into the meeting knowing this helps.

I always to to bake. Or at least bring something (like this last time because I completely forgot about the meeting). I learned this from my friend, Jenny. And from one of Christian's early interventionists. She had mentioned that a mom brought something to the EIP meeting and it set the tone for a more positive meeting and she always remembered it. Sugar neutralizes everything. I've been doing it ever since and, at the very least, everyone is excited to see you. How can they argue with someone who just brought them cookies?

Our IEP meetings aren't terrible. This may sound, indeed, terrible but I think it's because nobody really knows what to expect from Christian. Not even me. This time last year I would have put money on Christian learning to communicate and give us yes answers with his eyes. I thought this was the way we were going.


Christian had other plans and so did his voice. He actually started intentionally looking at and away from things and using his...VOICE. Who would have thought he'd use his voice to communicate anything other than crying? This kid. The one who didn't make a peep for six weeks after his accident. And then did nothing but cry for two years afterward. And now he makes sounds when we ask him if he wants something. And it's pretty damn consistent.

So everyone pretty much expects nothing from Christian, which may seem bad, but it's really because nobody knows what to expect. Especially looking at him. I'm sure if you read this blog you've seen pictures of him. He doesn't look like he can do much. But he's got you fooled, people.

Back to the IEP, because nobody really knows what to expect from Christian, everyone is always very pleased with his progress. He has grown leaps and bounds this year. When he's evaluated for goals he is rated from 0-5. For example, he has made a choice using his switch 3 out of 5 times. And it's measured every quarter for consistency. What his team is discovering is it's not whether Christian can do what is asked. It's about time. He just needs extra time.

And his kindergarten teacher reported that everyone loves Christian. All the kids want to read with him, choose him as a partner, sit with him, and I had to bite my lip so I didn't cry like a baby. That's what I want for him. Love and acceptance.

So we made some goals for next year. And I think we might try the...b...b...bu...bus. I'm not sure I'm ready for it but he is. He already rides the bus to and from field trips. It's me who needs therapy for this.

I'm just so pleased with his team. His SPED teacher is amazing and fights for what we want and makes sure it is written in the IEP. And his aid? Don't even get me started on his aid. She speaks Christian.

She sent me these pictures from her phone.

He's in excellent hands. I'm sure of it.

Wednesday, March 26, 2014

Still not sorry.

It was Spring break last week so we stopped for Gelato and headed off to the park. I like this park because it was refurbished so it was more special needs friendly. There is a set of swings that are made over-sized with extra support just for kids like Christian. There is even a sign on these swings that explicitly says that the swings are meant for children with special needs.

We've been to this park before. There are usually two swings available but this time there was just one. Literally one. Well, actually none. There was one swing occupied by five able-bodied kids and one swing was missing.

We sat down on a blanket with Christian and watched all those kids climbing all over that swing. I was fine waiting until they were done and just hanging out while Lola and my friend's children played. We watched the kids get rough and one girl fell off and got caught under the swing, started crying, and ran off. The ring leader, a girl of about eleven, kept on swinging the rest of the kids in that one swing higher and higher. Then she got on the swing and stood up on it with the other kids in it at the same time.

Seeing as how the other swing was completely missing, probably because of the same type of activity, and seeing as how I had just seen a little girl fall off and get hurt, I yelled over at the girl to stop standing on that swing and that's not how that swing should be used.

She got down but kept rough housing with the swing, pushing three other kids on the swing at the same time higher and higher. We had been waiting for them to finish with the one swing meant for kids with special needs. There was another regular swing set in the park, by the way.

I finally just got up and walked over to the ring leader and said, "Okay, you need play on this swing appropriately. This swing is meant for children with special needs and there is a regular swing set you can go over there and use. I've already seen you stand on this swing and I saw the other little girl fall off and get caught because of how you were playing on it. So if you're not going to use this swing correctly, you need to get off." Or something like that.

She nodded her head "okay" and then left. I went to sit down and another blanket of moms that had been watching this ring leader and all the kids swinging mouthed to me, "Thank you!" I gave them a thumbs up.

See, I wasn't just the crazy lady at the park. There were other moms looking along and thinking this ring leader had to be stopped.

I picked up Christian and walked over to the swing. We got to swing! He smiled in one position, cried in another, and almost fell asleep in the final position we tried.

Then came the summer camp kids. A kid with a green shirt about eight or nine years old ran up to our swing. He positioned himself closely on the side, almost in front of our swing so that we might hit him.

And this is what happened:

Kid: "Hey! Can I swing on that swing?!"

Me: "When we're done swinging."

Kid: "What's WRONG with  him?!"

This is the part I usually do one of two things. I either explain that Christian is different, he has a brain injury, etc. Or I ignore it. And I bury it somewhere inside or cry about it later.

But instead I chose a new route.

Me: "Nothing is WRONG with him. He has special needs. Now, back up."

He ran off to play elsewhere.

And I didn't feel bad about it at all. In fact, I felt like I was standing up for my kid, who surely can hear what other kids say about him.

I felt so NOT SORRY for what I did that I announced it. To Facebook. In a triumphant roar, I told our story, like I've done so many times before.

And you know what? Someone had a problem with it. I think I was accused of complaining and basically being unkind to a child who was just a wittle baby of eight or nine years old who didn't understand and that I should have taken the time to simply explain to him why Christian is different. There were harsh judgements made about how parents of children with special needs should act from someone who has zero children with special needs.

So this lady obviously DOES NOT know me. If she knew me she'd know that I educate people about Christian on a daily basis. A DAILY BASIS. And sometimes it is too hard to respond to the hurtful words of others so I just ignore it and feel bad about it later. This time? I stood up. I wasn't as patient as I should have been. I'm human. But guess what. It's not my job to teach all the time. I'll teach nineteen times. The twentieth time I'm tired.

But you know what else? My friends, my loved ones...they know me. They spoke for me when I couldn't and didn't know any of the commentary about my post was actually happening. They know I rarely, if ever, complain about our lives. They know that we educate, we connect, we try and support other parents - parents of all types of children. They know me. They know I'm not perfect. These are my people. And they roared for me.

Out of all this I realized three things:

1. Never, ever make judgments about how parents who have children with special needs should act IF YOU DON'T HAVE A CHILD WITH SPECIAL NEEDS.

2. We have a bad ass support system.

3. I'm still not sorry.

Thursday, February 27, 2014

Moving {On}

So we moved.

When moving commences things are unearthed from the dark corners of the closet. You repeat phrases like, "How did we accumulate so much stuff?" and then you pack it up and move all that accumulated stuff to the next house's dark cornered closets. Or am I the only one?

I was pulling stuff out of dark cornered closets and out from under dressers where I'd shoved old memories I didn't know what to do with. The whole process of moving makes you revisit things and decide whether you'd like to keep them as part of your life or toss it and move on. It's tiring, it's lengthy, it always takes longer than you think, but when you're purged and moved into somewhere nice and clean and new it feels good. That's when growth happens.

We never quite unpacked in the last house. We were there less than a year. Let me tell you the story of this house.

Our good friends owned the last house we ended up renting. They bought it to rent out when Christian was just a baby, pre-accident, and when we weren't looking for anything to rent. Manny did some work on the house to get it ready to rent out and I went over there a few times and thought it was a cool house. It had a pool outside and fruit trees, it was tri-level like my aunt's house in Colorado, which I loved. But, again, we weren't looking to rent at the time so it wasn't something I spent too much time thinking about.

Then a few years later, post-accident, when we were looking to rent we asked if the house was available. It wasn't. I think we might have asked every year after that. It still wasn't.

Then last year it was available. Just like that. So we moved into it right away.

But it has stairs.

So? We aren't letting stairs get in the way. We'll just carry Christian up and down those stairs. No big deal! He's not that heavy, anyway.

But the pool? Aren't you scared?

No way! We aren't letting this scare us out of having fun with our kids! Christian loves the water! Now he can have some pool therapy and Lola can practice her swimming skills. We'll have parties in the back yard like before. We'll put up a fence, we'll put an alarm on the door so it sounds an alarm every time it opens and closes. We'll nail the doggy door shut. It'll be fine!

So we did all that. We carried Christian up and down the stairs to his room every day. We secured the pool area. It was on lock down. And, yeah, there was a doggy door that stared me in the face every day. But it had a very symbolic bolt through the latch so it would never be opened. We didn't have as many pool parties as we had long ago, pre-accident. In fact, no matter how big and bad and tough I thought I was when it came to having a pool, no matter how brave I tried to be telling myself I wasn't going to let it stop us from living our life, it didn't stop the ominous feeling I had when I looked at that pool. It didn't erase the imagery. It didn't give me warm, fuzzy feelings.

We tried it. We tried to go back. It wasn't just with the house but with a few other things that came up over the last year where I think we tried to do things like we used to. We thought for sure we could go back and it would be fine. But sometimes you can't go back. It doesn't make sense and it no longer works. We're a different family. And it will be that way forever. The rental became a symbol of a whole lot of trying to go back and be that "normal," fun family we used to be despite wheelchairs and therapies. It was a house with stairs that I wanted us to live in long ago but it didn't work. And sometimes when you try to go back, it just doesn't work. You find out that stairs are absolutely ridiculous with a wheelchair and pools just might always be ominous.

When we found out we were finally in a position to buy, it was momentous. We decided immediately we wanted no stairs and no pool. When we finally packed up it hit me that this felt just so right. Like I mentioned at the beginning, we never really fully unpacked when we moved into the rental. So packing up, although it wasn't the funnest thing, it was easier. Because we never belonged there.

Looking back over the past year I realized we had so many tests and circumstances where we tried to go back and we were proven time and again that we didn't belong in the past. We are different. Forever and ever we are different. And you know what? That's totally okay. Moving on from all the things I thought I wanted, moving on from the fear, moving on from things that don't work or things that don't make sense, it all feels very cathartic. And maybe we're not the old "normal," fun family. We're now different and fun. Definitely still fun.

Where we are now? This is home. It's where we fit.

Friday, February 21, 2014

An Update at Long Last!

I can't believe it has been so long since my last blog post. After I lost the domain name for my other blog at Momma Candy, I had to step away from blogging for a second. Not only that but the beginning of this year was like shooting a cannon ball out of a cannon. Non stop!

And we moved!

Yes, again. Yes, it's been less than a year. There are many reasons we moved again but the main one was that we used to rent and now we own! The last house we were in had stairs and levels and more stairs. So we quickly found out that living in a house with stairs was absolutely ridiculous. Know how many stairs the new house has? Zero.

Christian also has his own room now. No more sharing with sister, as if either of them cared. I can't wait to share pictures of everything. But right now we're still putting things up on the walls and clearing out the last few boxes. This is home and we love it.

Christian is doing okay. The insurance he has enrolled him in a clinic that we'd heard of that other children with special needs attended. I've heard of these centralized programs where you go visit for the whole day and you're seen by several different doctors in the same day. Kind of like a one stop shop. When we first got out of the hospital I just started making appointments. I didn't wait around for anything. This created our own network of doctors we handpicked and a scheduled with appointments I scheduled when we needed them - neurology, orthopedics, pediatrician, additional therapies. But I always wished for a place that was a little more inclusive, where other children with special needs attended, with specialists, maybe a physiatrist. This is the place! They also hold wheelchair clinics and a CP clinic that might be helpful.

However, I'm already seeing the downside. They make all my appointments. I forget them all and I don't get upset about it because, frankly, I hate appointments. I feel like I've lost a little control and that bothers me. I purposely shelter us a little so that we can do our own thing. He's a little boy and we're a family. Not a medical patient and a science experiment.

My first impression of this clinic was - Wow! It really was built for children like Christian. And there were other children like Christian there. So this is where they had all been hiding out! It's what I had envisioned and seen from friends in big cities with their children.

On the other hand, I felt a little like we were under observation. Of course, that first appointment is a getting-to-know-you appointment. But we spoke with a new pediatrician (not sure why, I have no intention of changing ours), we spoke with a nutritionist who was whispered to behind a closed door that we were doing the blended diet. Luckily, she seemed supportive. But suggestive. Have you tried this? Have you tried that? We're good. Thanks.

We also talked to a social worker, which is routine for the first appointment, I guess, but it felt weird.

So I'm giving this clinic, centralized, one stop shop thing a go. We'll see how it turns out.

Christian has been doing well in school, working on communication, and he's super tight with his fabulous aid and teacher who would move mountains for him.

I am, however, concerned about his seizures. For some reason they've become stronger and he has even lost his breath a few times. That's kind of a deal breaker for me. The only thing is that it's paired with congestion and phlegm that don't seem to be tied to any kind of sickness. Probably just allergies. So I'm wondering if I should wait to see if it passes or call the neuro tomorrow. I think I'm going to finally call. This isn't passing and I have no idea why. I'm afraid he's going to tell us we need another EEG. For what? To find out he's having seizures? We already know that. Do we increase meds? Great. Whatever it is we have to figure out something. There are seizures we can live with and these aren't those.

Other than that, Christian is plugging along. He didn't get to go to school for Valentines Day because of the seizures and congestion but we did put together our annual 3E Love Valentines and dropped them off for his class. When he came back to school he had a backpack of Valentines and candy!

It's warm here now and we're experiencing some beautiful weather here in Arizona. But back when it was cold Christian could really rock a beanie. Dude.

Christian also got an award at the beginning of the year and we love celebrating this. Sister is so proud.

Despite all the seizure nonsense, we can still be thankful that Christian is doing okay in most other ways. He is still "talking," he still smiles, and he is so loved. 

I've got more to write about like more about our move, what Christian got for Christmas (and my annual gift guide for children with special needs), and some other things on my mind. Promise it won't be another month until I update. See you soon!

Wednesday, January 1, 2014

Take Care of Each Other

We were invited to a birthday party a few months ago of a little boy close to Christian's age. It was at a park.

Christian is getting bigger and not looking like a baby so much so we get a lot of stares. We have a safe little bubble, our family, his school, of people who know him and love him. But when we step outside of the bubble it's glaringly apparent that Christian is different. Those who stare the longest and even make comments or look terrified are usually kids, mostly boys, that are pre-teen, around the ages of 8-10.

So you can imagine why I might have felt a little anxiety about going to a a park...full of kids. This feeling isn't like me. I'm usually brave. But I've started to feel small in these situations. I really shouldn't. Kids get stared at all the time for all sorts of reasons. But when it's your kid - your baby - it's different. It's a knife in your chest.

But I'm not one to let any situation hold us back, even if it makes us uncomfortable. I faced it head on with a little prayer to God to get me through the ordeal and take care of us.

I know it seems like I was making a bigger deal out of it than it should have been but sometimes things hit and you don't know why or when. They're sensitivities that you don't even know exist until you're faced with it head on and it makes you question any and all healing of your own psyche that has taken place thus far. Grief is never truly over. Anyone who has grieved over something will tell you that.

Take, for instance, tonight. I put all of the Christmas decorations away and that always causes such introspection and thought about where we were last year, where we'll be next time we pull all these ornaments out again. But tonight I had to put away all the little Baby Christian ornaments. The one of him on a rocking horse that says, "Baby's First Christmas." The photo of him on his first visit with Santa. Little goodbyes. Of course, any mother gets sad reminiscing about her babies' firsts but this is different. It cuts different.

Anyway, I'm on a tangent.

Back to the park. We went to the party. I was my happy and merry self so as to make sure nobody was uncomfortable or sad for this child who was clearly disabled. There were so many kids there. So many. It was a park on a Saturday, go figure.

And just when I thought this whole shindig would be okay, no harm done, one of those damn kids had to say something. Not from the party. Those kids were fine. It was a random kid, a boy, around ten. He was talking to his mom and she was talking to him about Christian because her younger son took an interest in befriending him. She quietly asked her older son if he knew why Christian was the way he was (as if she knew), and he said, "Yeah! That's what happens when kids get sick and die."

His mom was embarrassed and tried to correct him in hushed tones and they were a little too far away from me to correct. That, or maybe I just wasn't feeling all that brave.

I swallowed it and headed toward the swings with Christian. They were swings adapted for special needs and another mom was there with her daughter. When she saw us coming she told her able bodied daughter to get off the swing so Christian could get on but she lingered nearby. I scooped up Christian and went to go sit with him on my lap since there wasn't much support in the swing for him. It would be quite the maneuver trying to sit down into a moving swing with him in my arms. I started to back up and out of the corner of my eye saw the lingering mom move quickly over to our intended swing, reach out an arm, and stabilize the swing so I could carefully sit down without falling on my ass. I thanked her and she looked me in the eyes, smiled, and said, "You're welcome."

We swung. We flew. He smiled and the rest of the park kind of faded for a bit.

The rest of the party was fine, uneventful even. We made it through in one piece and the world didn't end. My little prayer was answered, we were taken care of.

In this New Year look around you. Does someone need comforting? Is there a friend that needs you to listen for a little while? Can you do something for someone else just to be nice? Are you kind? Even online? I heard this somewhere else but if you aren't kind on the internet, you are not kind.

Is there someone that needs you to open their door? Maybe there's someone who needs you to hold her swing so she can swing with her son.

In 2014 take care of each other.

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