...Aaaand Send.

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Why, hello there, head control!

We've missed you so! Glad to see you again. You know, I'd really appreciate it if you stuck around for good, maybe plant some roots and hang out for a good long while. Maybe even for good.

K thanks,
Christian's Mommy

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Hey, medical staff/assistants/professionals/people in charge of processing things...could you please please please do stuff in a timely manner? Pretty please? This whole leaving things until the very last minute is really stressful. Failing to complete what you're supposed to fax to the neurology office at Phoenix Children's when you knew about it three weeks ago and now I'm calling you just to confirm things and I find out you never faxed it because YOU NEEDED THE NAME OF THE DOCTOR BUT NEVER CALLED ME really pissed me off today!!! And if you need me to go down there, gather my son's records and fax them myself I'd be happy to oblige!!! Because when I was in the "workforce" I did that stuff for people...in a timely manner...imagine!

I understand things come up and we're not your only patient and I should have patience and all that, but I'm not really buying that mess right now. All of my patience is reserved for my children, most of it is spent on being patient waiting for the next move Christian will make, hoping it's progress and nothing seizurey. So all of my patience is out and, sorry, but it's too bad you don't get any. No patience for you!

Can we get it together, please?
Thanks,
The Pain in Your Ass

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Dear Lady I've Never Met,

Thanks for having the guts to ask the most ballsy question I've ever been asked. When you asked, "Does all of her activity make up for what he can't do?" regarding my disabled son and very abled daughter, I really didn't know what to say. But thanks for giving me something to think about and leaving me at a loss for words for second. But only a second, because this is ME we're talking about here.

No, it doesn't "make up" for what Christian's can't do. It does keep me busy enough not to think about what he can't do so I guess that helps.

I know you meant well,
Speechless and Tired Mommy

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New Dentist,

I really like you. Thank you for being so gentle with my boy for his first dentist appointment. I love appointments where I don't have to be immediately concerned about any particular thing and I don't have to contemplate surgeries or medications or bracing or whatever. Thank you for giving him a new Diego toothbrush just like all the other 2 year olds get.

See you soon!
Happy Mama Bear

The Heart of Life is Good

Pain throws your heart to the ground

Love turns the whole thing around
No, it won't all go the way, it should

But I know the heart of life is good

-The Heart of Life is Good, John Mayer

Oh, I know it's good.

Sometimes that "heart of life" is overshadowed and buried in grief and sadness and worry. And then other times it shines through all the muck and there is beauty.

I experienced some of that heart of life stuff when I received a large envelope in the mail from one of our coolest friends, Jennifer. Wouldn't you know it, she knew I really wanted this book called Just Because, by Rebecca Elliott. It's a children's book about the author's two children - her severely disabled daughter, Clemmie, and her younger son, Toby. She writes about life with Clemmie from Toby's perspective. Here's an excerpt.

"My big sister Clemmie is my best friend. She can’t walk, talk, move around much, make macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because...Clemmie has a great chair. Last Tuesday we went to the moon on it. I don’t know why we didn’t go to Jupiter as well. Just because...Clemmie doesn’t mind it when I bang things really loudly or chase the cat or eat the crayons. Sometimes I do these things just because."

The writer's goal was to highlight the positives of having a child with disabilities. The book is beautiful and the gift Jennifer gave me last week by sending me that book was beautiful. It reminded me of how much good is in this world. It reminded me of that "heart of life" thing again. And I really hope she knows how much it meant to me.

On Rebecca Elliott's website there is an article she did for Practical Parenting (UK) where she offers tips for parents with children with special needs. Her 5th tip pretty much spoke to me and some of the worries I've been having.

"Don't let yourself worry about the future, it will take care of itself so there is no point fretting about it now. Take one day at a time and enjoy all the great things about your child."

Sound advice, Miss Elliott.

So enjoy we did! We seized the day today and visited Mt. Lemmon. It's our mountain oasis just about an hour away.

And loosely quoting the movie The Road, "If this isn't of God, then God never spoke."

We took the kids for their first mini-hike.

(Gabe wasn't there because he was visiting his Grampa. Next time, though, we already have plans for just the three of us, sans the monkeys.)

And since there's always room for sensory stuff, Christian felt his first pine cone...

...and didn't much care for it.

We found that "heart of life" thing and grabbed hold of it today. It was in the sunlight over the mountaintop, it was in the way we wrapped our babies in sweaters and blankets in the cold mountain air, and it was there when we drove down the mountain talking about the next time we'd visit or when we'd see the snow again. It surrounded us today and it was good.
 
I know it's good.

Tales of a Giant Toddler

See the picture below?

I have a giant baby. Well, I guess he's a giant toddler now. I was trying to take a picture of his new boots because it got just a tiny bit cool in the air so we decided it was time for boots!

But, alas, my child is just too big and I am just not talented enough to take a picture and hold this giant child at the same time. So no picture of the boots. But, instead, I got a picture of a child that seems half my size. Yowza! And I not-so-secretly love this picture because look how relaxed he is! No arching, no extension! It's given us some problems with head control BUT (and this is a nice "but") it allows for some very comfy snuggling time.

So guess what the giant toddler got today...a light box!

What's a light box, you ask? It's a big box that illuminates while different shapes and colors are placed on it and light shines through. This allows Christian to use his vision to see shapes and colors using contrasting light. Our wonderful vision therapist from ASDB brought this toy for us to play with for a while. 

Look, Lola helping Christian understand just how it works. Such a good little helper! 

Another great sensory toy that I've known about for a while is the space blanket! No, Christian isn't cold. This is a regular camping blanket sold at Walmart for just over $2. It's huge and it's such a great sensory tool. Christian can touch it, pull it, hear it, and see it. Every time he moves underneath it, he gets some kind of feedback and/or sensory input. I put the blanket on him to get him going and it works every time. He can't resist the space blanket!

And what do giant babies that turn into giant toddlers get to sleep in? A crib? No way! Not anymore! The giant toddler gets a big boy bed! And not just any big boy bed. No. This bed is actually specially made for Christian by his awesome daddy. He built the frame tall enough so that lifting the giant toddler wouldn't be hard on our backs. The base was welded together and painted and allows enough storage for our home hyperbarics chamber. It looks small because it's deflated, but when it's inflated it's bigger. We'll use underneath the bed to store it and roll it out for HBOT sessions (which will be starting again soon).

This giant boy is definitely a lucky boy. I've been noticing some good things lately. Christian now has very different cries. Without looking at him I know his tired cry. He has a different cry for when he's hurt, he has a whimper that sounds like a puppy, and he also whines until he's held. Then he miraculously stops crying when he's being held. Hmmmm. I think he's playing us. He seems to be able to tell us every "no" emotion in every which way. Now if we could just get him to work on the "yes"...

So the giant toddler has a big boy bed to sleep in and he's already ahead of the game tonight as he's off in dream land. During sleep he's been moving a lot, which is interesting. While he's sleeping he can roll from his back to side and back again, he stretches his arms above his head, and sometimes he's found in different positions then where I left him. Can we please do this while we're awake, Christian?

New bed to sleep in, new light box to play with, sensory stimulation from the space blanket...all the makings of a very tired and very beautiful giant toddler.

(He's still my giant baby, but don't tell him I called him that, okay?)

 Look at those big boy kissy lips!

Patience, Play Dates, and Kindness!

Boy, I'll tell ya, this patience thing is for the birds.

I promised myself that we would not do ANYTHING new until after we started the Keto diet and measured the results. This will allow us to see the all important - what's working?! - and keep doing it.

But all this time on our hands, not planning any trips, not making travel arrangements, not organizing a fundraising event, not researching the newest alternative therapy, really leaves a lot of time to think. Maybe that's the reason for all the gray lately. (P.S. Hubby wants me to change my nocturnal nails to something other than gray after the last post. :-\)

And then I find myself on the phone with the local horseback riding therapy program (hippotherapy). I just can't let it be, can I?! Seriously, though, I'm not starting Christian on anything new until we've seen what, if anything, the Keto diet can do for him.

So we sit. We wait. But we only have about a week and a half until our Phoenix appointment! I'm starting to get excited and may even call Monday to see if they've received any cancellations so we can move this baby up!

All this sitting and waiting is really more of a figurative description of my mental state because we really got out this week. In fact, I'm pretty sure play dates saved my sanity.

We first met up with our friends we met at church, including the beautiful little Giselle, who is only one week older than Christian. She had uncontrollable seizures and experienced quite the journey with medications and doctors all over the country and nothing worked. Then they found the Keto diet and it changed their life.

Giselle's mom also told me about The Charlie Foundation. If you want to know anything remotely related to the Ketogenic diet and how it works, go there!

And I would've taken pictures, I mean with it being Christian's first date and all, but Miss Giselle was sleeping the whole time and I thought it might be weird if I took a picture of this nice woman's sleeping child on our first play date. Next time for sure!

Midweek we met up with some more friends at the park. Christian seemed to enjoy being outside and listening to the kids. Lola came back with dirty hands and knees so I'd say it was a success.

Then we finished out our week with a trip to the zoo yesterday and Aunt Pamy coming to visit from Colorado.

I love getting together with other moms. It's good for the soul. These play date things, they kind of save you. I don't know if I've been locked away for too long but I find myself either saying or thinking..."Oh, my God, you're so right!" or "Exactly!" And then other moms kind of join in, moms you've never even met and everyone acts as if they've known each other forever. All because we share a common bond of not necessarily special needs, not necessarily having a child between 6 and 36 months, but just because we're all moms. We all have really funny stories, really sad stories, really annoying stories, and stories that really just make us want to have a drink (or two). And we all get kind of annoyed by the older kids on their field trips bulldozing the playground and taking everything over!

These play dates are cathartic and necessary and I do love this part about mommyhood.

One more thing...you all know how much I love and adore Ben's Bells and how special this organization is to me. Well, I'm so excited and proud to see it grow and spread to Denver thanks to some really super Momma's who want to spread the message. Read about it here!

And here!

So visit, support, and help them spread kindness...

"Be kind...because everyone is fighting their own epic battle."

Gray

I'm testing out a beautiful shade of dark gray on my fingernails. It's by Avon and it's called "Nocturnal." Gray is very in right now and I'm finding myself jumping on gray's bandwagon.

I'd like to say that my attraction for gray is in color only, but that wouldn't be truthful.

I'll just warn you right now that I don't really write about the really tough stuff. Some may think day to day things can be hard or talking to ego inflated doctors is hard or life, in general, is hard. It's nothing compared to the deep down stuff. The really tough stuff that surfaces when you're just left to your own thoughts and dreams.

You'll have to excuse me, I'm at the airport tonight.

I read a blog entry by Kelle Hampton tonight called Grays and Colors. She writes of her daughter with Downs Syndrome and life expectancy.

Life expectancy hasn't really been something I had visited when thinking of Christian's future. Not because I'm avoiding the subject, because there's no reason, at this point, to believe he wouldn't live a long life. I mean, thank God, he's healthy and has no respiratory issues, not even the slightest cold. I'm deeply thankful for this.

But recently, I don't know what set me off on this tangent thought and I'm not sure if I heard the question out loud or if I asked it to myself regarding your children outliving you. But, every parent hopes and prays they'll pass on before their children. I'm no exception.

However, when I dug a little deeper into my own psyche, and really thought about the concept of wanting to pass on before my children, I had a different answer for Christian.

The truthfulness with myself took me by surprise, but it was truth nonetheless.

I had to analyze this question knowing what I know to be true now. What is true is that Christian needs to be taken care of. He is my forever baby. The truth at this moment is that he needs a lot of assistance. Assistance to do everything.

I'm not counting out more healing in the future, but as the truth lies with us right this second, in Christian's current condition of depending on someone else to take care of him for his everyday needs, I can honestly say I'm not sure I want to pass before him.

The sole reason I feel this way is because I'm scared of what would face him if I weren't here to love him and protect him. I'm scared of the unknown. And maybe it's way premature to even think about this stuff, but it's there, floating around in my head.

Tough stuff, I know. I don't mean to get all "gray" on you. But it's the truth. After reading the Kelle Hampton's blog addressing her thoughts and sadness pondering life expectancy for her child, it hit a nerve.

By no means do I sit around thinking about my son dying. Please. After our first encounter with death, I don't really wish to revisit it...ever again. And when I picture these thoughts I picture both Christian and I old and...gray.

Halloween Happy

I really love Halloween a little bit more each year. I liked dressing up when I was little so, to me, it's like one big dress up day. My sister and I used to dress up in mostly homemade costumes, thanks to Mom. We'd get tons of candy, count it up at the end of the night, making sure to check for razor blades and to see who got the most candy. Then my mom would hide it in the freezer allowing us one piece a day. She relied on us forgetting all about the candy, eventually, so she could throw the remainder away.

Halloween is one of those holidays that makes it so much fun to be a mom. Ever since Gabe was little, I've dressed him up and taken him to the same neighborhood, with the exception of a few years, and it's now the neighborhood we live in. And our neighborhood really stepped it up this year!

There were more decorated houses, more strobe lights, more characters, more fog machines, it was so much fun!

You know what else was great about this Halloween? It was Lola and Christian's very first time trick or treating. Last year Lola was in my belly and Christian stayed home with Daddy. And Christian's first Halloween only met him at a few months old.

We started the Halloween festivities with carving pumpkins the night before. Gabe didn't join us because he went to a friend's house and as he put it, "Mom! You have tons of pictures of me carving pumpkins. I don't need to do it again." So I settled on watching I Know What You Did Last Summer and picking out Halloween candy with him before he was off to his friend's house.

But the big kids wanted to do it (i.e. Mom and Dad). And, by far the cutest pumpkins to come from our carvings were the Lola pumpkin on the left and the Christian (Frankenstein) pumpkin on the right.

I guess I love Halloween especially so because there are limitations on a lot Christian can participate in with regular children, so we grasp at what we can. Dressing him up and taking him trick or treating is something we can do. So trick or treating we did!

But first we need a pre-trick or treating pep talk from Dad.

"Okay, I think I'm ready."

Lola is ready, too.

 Another thing I LOVE about our neighborhood is that some of the houses have special treats for kids they recognize that actually live in our neighborhood. It's so sweet. We're met with a, "Happy Hallow- Oh! I know you! You get a special treat!" And from behind their backs appears a little extra something. One of the extra somethings this year was a Halloween bunny for each baby. Christian liked his and "petted" it the entire trip.

"Hold my hand, Christian!"

After we came home,  Lola got to try her first lollipop all by herself, as she insisted, without anyone holding it for her. It ain't Halloween 'til someone has a sugar rush.

So, of course, Christian had to do it, too! With Daddy's help, Christian was able to grasp the stick and taste the lollipop. And it ain't Halloween unless someone is holding a lollipop.

(Look, Miss Kim, grasping the lollipop stick all by myself!)

 Completely exhausted from the whole ordeal, Christian falls fast asleep with Mr. Halloween bunny by his side.

 It was a great Halloween with great family and great neighbors. It was a Halloween that made me happy and excited to be a mom. All of my children had some kind of fun, whether it was Gabe going trick or treating with friends all by himself for the first time, Christian holding Mr. Bunny, or Lola getting her sugar rush on. And that makes this mommy even happier.

Time to put the candy in the freezer.

Seriously?

I finally get a call from the super busy appointment scheduler after about two weeks of trying to secure just one appointment.

I need the appointment for Christian with a neurologist in Phoenix in order start the Ketogenic Diet. It's a formality. And because they have to evaluate Christian to make sure he's a candidate and that he's tried other things that were unsuccessful.

I finally got the appointment...in December...December 14th...Lola's 1st birthday...wait, it gets better.

Not only is the soonest appointment available on my baby daughter's 1st birthday, but the only epileptologist available in the shortest amount of time is THE doctor. That's right, the one and only doctor that our neuro in Tucson suggested we NOT make an appointment with because "we wouldn't mesh well together." No other doctor is available for a single, frickin' consult until January, February, March, or April.

In addition to that awesome news, I was also informed that contrary to what I had been told, they would need to admit Christian to the hospital to start the diet.

Seriously?

I stood in my kitchen a little dumbfounded. Listed above are all things that can be worked around. It was just the sudden barrage of information completely opposite of what I had envisioned. I had to tell the scheduler I'd call her back.

I didn't even know what to say. I just felt that it was all wrong. I'm a really big believer in signs if you haven't already guessed, and all these signs coming my way at the same time in the same conversation was crazy overwhelming.

So I sat down and thought. My dear husband tries really hard to talk me out of my worry, but today I wasn't even hearing a word he said because I was trying to process what to do next. Just go ahead with the appointment with the doctor, the only doctor I was told NOT to pursue?

After processing, I got up off the couch and looked at the myketocal.com website for the list to the other practice I had heard about. The other practice of pediatric neurologists just happened to be the same group along with the same dietitian the little girl I met last Sunday at church goes to. I called, got through to the scheduler right away, and we have an appointment in three weeks for the consult. I spoke with the dietitian and she assured me we wouldn't have to be admitted to the hospital to begin the diet.

Crisis averted.

I know it seems like really small facts and changes of plans that can be worked around, but there were just too many things at the same time not lining up how we had planned for me to continue with scheduling the appointment. This is a big deal and it has to be right.

November 17th, here we come!