My Holland My Italy

I came across Holland many months ago. It's an excerpt by a woman explaining what it's like to have a child with special needs. It is so, so accurate in it's description and it frequents the new subscribers to the special needs club. Please read...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This is pretty much our life. But instead of detouring from Italy to Holland, we were living life perfectly happy in Italy and woke up in Holland.

One of my very favorite blogs questioned why we can't go to Italy. We can go to Italy any time we want!

I really think this is true. So I make it a point to go to Italy.

I know, just follow me on this one.

Going to Italy is really just a metaphor for going to "normal."

I make a point to do this.

I get up every morning and put on a little too much makeup and take a little too much time to do my hair. Especially when all I have ahead of me are therapy appointments, daytime television, unreturned messages, and dinner to make.

I gossip with girlfriends...a lot.

We watch Wednesday night television (Modern Family, The Middle) as a family on our big couch with too many pillows.

Speaking of television, I watch trashy reality TV and eat cookies at midnight while everyone is fast asleep.

I try to go out of my way to go to Italy. I really try. But I'm only visiting because I have a permanent residence in Holland.

And then there's my Lola bird. She's my Italy. She wakes up happy and smiling and doing new things, grabbing for toys and rolling around and...my cup runneth over. This is Italy. God knew exactly what he was doing when he sent her to me.

And then I'm sad. Because my heart is in Holland. As much as Holland wears me down, I miss it.

I went to see my old friend, Target. (They have Targets in Holland, too.) I noticed all of the Easter necessities - plastic green grass, chocolate bunnies, translucent eggs that will be filled with candy or maybe even money or broccoli (funny story for another time). I decided to pick some things up for the kids because in my household, EVERYONE gets an Easter basket. When I was little we didn't have much, but we always had Easter baskets or Easter umbrellas or Easter purses left by the Easter bunny. He was good about that.

So there I was with my old friend, Target. And I was in Italy - just so excited to be there picking things out, um, to assist the Easter bunny, of course. I was almost in a delirious frenzy. I got matching shirts for my boys and a new sun hat for Lola. I picked out small things to fill Gabe's basket and then traveled to the isle in the baby section with all of the sensory toys and rattles and...BAM!...

You don't belong in Italy! Go back to Holland!

It was a small stab in my chest. What do I get for Christian? What kind of basket does he get? Damn Italy.

I reminisce about Italy for a couple minutes while searching for something for Christian. Last Easter, Christian was in his long john pajamas, so sleepy and unaware of what was taking place. He just knew he was being propped up next to fuzzy things. He wore a collared jumper and hated when his feet touched the grass. He tasted a cupcake.

I guess he's not too far from that. He'll still probably be so sleepy and unaware of what is taking place. Not so bad, I guess, but a harsh reminder that we live in Holland now.

Both Christian and Lola will have a tiny basket with a rattle in it. Lola's will be pink and Christian's will be black and white - good for his vision. Christian got a new outfit for Easter, as I mentioned before, a plaid shirt that will match his big brother's. Gabe will be thrilled.

I pick out the clothes more for me than for Christian. And they all say Made in Holland because these clothes won't rip or tear or be rolled around in. They won't have grass stains or crusty mud. These clothes won't fall victim to a terrible two year old. It's not like that Holland.

Am I struggling to adapt to Holland? Not really. We're all making it work. But sometimes I put on just a dab of perfume to cover up the baby throw up smell and I close my eyes really tight and I feel a little...Italian.

On Sunday, we'll celebrate Easter - the girls with their dresses, the boys with matching outfits. We'll make sure to put on our wooden shoes because although Italy is and was so much fun, we belong in Holland.

It is, indeed, slower here and it's a new way of life. But it is also so very lovely.

My Holland and My Italy

"Don't worry, brother, I'll save you!"

"I'd rather play piano."

Auction Time!

The time has come!

It's auction time, baby!

Well, at least it's auction preview time.

We were able to get a lot of awesome donations! I am always so pleasantly surprised by those who are so willing to simply...help.

The auction will begin April 3rd at 12 noon, central time and it will continue for one whole week, closing at 12 noon on April 10th.

The auction is blog style (I call it a blogction). Which means it's run much like this blog only instead of placing a comment, you'll place a bid! So easy!

We've got some really cool items including hand made jewelry, beautiful prints, cool children's clothing, glass fortune cookies, and tons more stuff.

Here is the link...http://christiansjourneyblogction.blogspot.com/. I will also have one in the sidebar to the right.

We'll also be adding new items every day until the auction. So not only is what you see available for bidding, but there will be more! Yes, more!

Why are we holding an auction?

I promised Christian and I promised God that I would do whatever it took to help Christian recover. I intend to follow through with that promise if it takes my entire life. Because I take this promise seriously, I'm always looking for alternative methods and therapies that may help Christian get that much better that much quicker. 100% of this auction will go toward helping me uphold that promise.

A big thanks to EVERYONE who donated. And a ginormous THANKS to Pam Nichol for all of her help (this is such an understatement) and putting up with my constant barage of facebook messages. And additional THANKS to Jenny Fischer for being my auction role model and letting me steel stuff from her.

Have fun bidding!

Twenty-Four

"The diaper goes on my butt, Daddy!"

The twenty-four hour EEG is over! The picture above is what they sent us home with. We arrived at around 3PM yesterday and the EEG technician, who was so very interested in talking about himself, was quick with everything. He proceeded to tell me about how much he loved his job, what a people-person he was, and how he was a hard worker. He wore a thick gold chain, was 42 years old, and had band practice after work, which he mentioned three times. You get the picture.

Underneath the gauze are electrodes that were pasted, yes pasted as in glued, to his head. There are so many, they wrap the entire head in gauze so the electrodes won't be pulled or yanked. They definitely wouldn't fall off with all that putty that keeps them on. But if they got pulled, it would pull Christian's hair. And he just started growing that so we kind of want to keep it there.

Through the span of twenty-four hours, anytime we saw anything remotely suspicious, we had to press a button that was on a box hooked up to the wiring. The box holds a memory card type thing that downloads all of the information into the computer at the end of the twenty-four hours. We were also sent home with a log to log in everytime we pressed the button, why we pressed it, and what we saw. We also had another log to explain our daily activities.

Today we went back at around 2PM to get the electrodes removed. Now a pediatric neurologist will read the EEG, compare it with my notes and everytime I pressed the button, and he'll formulate a report. I'm actually excited (yes, excited) because the neurologist that will be reading the EEG is supposed to be the best at pediatric neurology and seizures. Wanna know why we can't go see him? Because we've already seen the other less than favorite neurologist (Dr. Death anyone?) and they have a policy at their practice that once you've seen one doctor you can NEVER see another one there. Lame.

Oh, it was a glorious twenty-four hours. Pretty much non stop crying and whining. I think it's fair to say he HATED it. I don't blame him in the least. He was up all night so I didn't get too much sleep. And then he cried all day until we went to get it removed. As soon as it was all gone - silence.

The gauze "hat" finally loosened from his head and wouldn't go back on. So we changed it up.

Instead he wore a winter beanie with a chin strap. Why don't they distribute these instead? It was way more efficient and way more comfortable for Christian, even though the picture doesn't look like it. It was so snug (as you can tell) that it didn't allow for any pull. So we got some peace.

Even though the crying and whining are absolutely mind numbing at times, and I would even go so far as to say it burns a hole through my heart, it is good!

Everyone keeps telling me that and I only halfway believe them.

But it is really good. This is the only way Christian knows how to communicate. And, dammit if he's not going to use his only mode of verbal communication to tell me when he doesn't like something!

We won't have results for about a week. I'm okay with that. That means they'll be thorough. No room for guessing or interpretation. I'm not so much nervous anymore as I am anxious for more information so we can move forward. Dare I say, excited? I actually did say that to the full-of-himself EEG tech.

I've already primed my brain. I've already prepared myself for the worst (remember my whole self preservation thing), but, of course, I'm hoping for the best.

So I'm off to enjoy my last week of ignorance.

And if it is seizures, we're going to kick seizures' collective ass.

Jerks

I know my son doesn't like to travel through the night. I know this about him. He can travel in his carseat all the live long day. But he's used to lying down to sleep at night, so he clearly hates to drive through the night because it's hard for him to fall asleep. Now we know, so we will only be taking road trips during the day.

I know my son hates the hyperbaric chamber. Don't get me wrong, we're still doing it because it's helped him immensely. But he absolutely, without a doubt, hates it. He cries as soon as we get in. He's resorted to crying the entire hour and change...loudly. And as soon as we get out, he stops crying. Doesn't take a genius to figure it out.

I know these things about my son.

What I don't know is what is going on in his brain. Specifically, what is making him jerk.

These jerks and possible seizure activity have been one of the biproducts of Christian's injury that I just can't figure out. It's a puzzle I have no idea how to solve it.

We've had EEG's but they've only been snippets of what is really going on. The jerks didn't show up on the EEG. Not even a blip. These jerks have evolved. They started out with just his eyes jerking up to the right very quickly. Then the jerks included his head. The jerks used to be extremely frequent - a reaction to any sound or movement that was sudden, like an exaggerated startle. Now he's not nearly as sensitive so the jerks aren't as frequent. But they've evolved into something harder. And they bother him. He cries when it happens, even if they only last about 3 seconds.

So the time has come for a 24 hour EEG. This will monitor Christian's brain activity for an entire 24 hours. The good news is he is hooked up to electrodes and then comes home with them attached to his head. So no hospital stay. We like that.

The not as good news is that it isn't a video EEG. It's not the end of the world, it just means a little extra work on my part to mark times and take my own video to correlate with possible EEG findings. But the EEG report won't be ready until next week. Boo. We don't like that. I hate to wait and I'm so impatient, especially when it comes to medical stuff.

As for what we'll do...well, the verdict is still out. The medication, Keppra, that Christian has been on since his PICU stay hasn't done a damn bit of difference, in my opinion. And all the while I've always wondered what Christian's jerks or seizure activity would look like without medication. I wonder this because while Christian was on Versed and Fentinyl, drugs that were supposed to calm him, he was agitated and not very calm at all. When Christian was on Baclofen to relax his tone, he was at his highest tone. My point is that Christian tends to react the opposite way for which the medication is intended. So why not see what happens if we choose not to medicate? If I don't at least try, I'll always wonder.

This would be awesome if it was successful. That would mean Christian was off ALL meds and only on vitamin supplements. And if we chose the opposite - to medicate, whether it was to increase the dosage of the current medication or add a new seizure med in addition to the current medication - we are basically heading toward the spiral of medication hell. I hate this idea. It is my least favorite option.

I'm really pulled to trying our hand at not medicating. But it's really scary. It feels like such a gamble. But, then again, so is introducing more medication, right?

I'm heavily considering not medicating now, but what about after receiving the results of the EEG? What if it's messy? What if it's horrible? What if he's having all of these seizures I can't recognize? What if he's having seizures that cause further damage?

That's my worst fear.

You know, when we were in the PICU, a nurse told me, "It's okay if he has seizures, because you can control those with medication." What a dummy. I know that sounds mean but I don't think she could have been more wrong, as I've discovered.

Usually I have some confidence about where we're going, but I'm admittedly totally lost when it comes to seizures or the possibility of them. They scare the crap out of me and I have no gut feeling about them. So I guess ask me if we'll choose not to medicate after I receive the results. I may feel differently about the whole situation. I'm preparing myself for the worse for self preservation purposes.

Ugh, I'm nervous. We need thoughts and prayers! I'm okay with it being status quo. I just don't want it to be worse.

So if you have a second, please say a mini-prayer for Christian - that the EEG process doesn't horribly agrivate him, and for me - that I can handle whatever results we get and make the right decision for Christian accordingly.

To be continued...

After ABM

So what did you think?

This is what everyone wants to know about ABM after our trip to Denver.

Manny and I both agreed we definitely saw more focus and attention in Christian than we've ever seen in any therapy session Christian has ever done.

What it looks like...

Well, the ABM practitioner, Andrew, did a lot of small movements that were meant to encourage Christian to initiate movement on his own. He's been more interested lately in rolling so this is what Andrew was working on - encouraging Christian to roll. I think the ABM therapy built on that new and existing desire, definitely. This is, really, how a brand new baby learns to move - by rolling.

But back to the focus...Christian was so engaged. His eyes were wide and he'd look for Andrew sometimes if he heard his voice behind him. You could really see Christian trying to figure things out. And even though the movements seemed small, Christian seemed like he was trying so hard. It's really hard to explain.

Another thing that happened when we would visit Andrew is that Christian would start moving his arms. He does this pretty regularly, but it's kind of random. If he feels like it, he'll do it. But every time I took him to see Andrew, his arms started flapping and waving his arms like he was going to take flight.

He is such a little blackbird.

The little movements are slow, but very important. See, Christian can have therapy all day and all night. But can he retain it? Can he remember it? Can he get there himself? These little questions, these little gaps of information, are what ABM looks to fill.

After what I've seen and heard, I think we're going to pursue this therapy. I found a practitioner in Tempe, which is about an hour away. So next month, if things go as planned, we'll be visiting Tempe for a week for another intensive ABM session. This means twice a day for five days.

So, as mentioned before, we're planning an online auction so we can pursue this therapy. The auction is set for April 3rd and there will be more details to come soon. But for now, if you're crafty, if you make things, if you have any unused gift cards, or just want to donate a service, please send me an email gabriels_mama@yahoo.com. 

Say It Ain't Snow!!!

Say it ain't snow!

The time has come. We are forced to leave snowy Denver and head back to sunny Arizona. Rats! We had a wonderful week of ABM therapy, family, friends, good food, and...snow. Well, I asked for it, didn't I? And boy did the weather deliver today. I don't think there was a time I looked outside when it wasn't snowing.

The funny thing is that it was warm and sunny two days ago.

On one of the not-so-snowy days, we got the best gift. It was a day at the park with my mommy friends and a photo session by Mary Elizabeth Graff Photography. She's a friend of my mommy friend, Jenny, and she took the time out of her day to come and take pictures of us with our (sometimes uncooperative) beautiful children. When I say "uncooperative," I really mean "pissed off because it's sunny and windy." And when I say "children," I really mean Christian.

Anyway Mary did an A-MAZ-ING job! So without further ado, presenting the work of Mary Elizabeth Graff and my beautiful mommy friends and their super duper babies!

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Brave Little Souls

So I guess the weather in Denver reads my blog! We woke up to snow on the ground yesterday. And then today was sunny and warm. What is this place?!?!

Sunny or snowing, this place we call Denver houses two very new and very cherished friends of ours. I guess they're not so new anymore. But these two friends were the first special needs Super Mommies that guided me out of the darkness and into this new special world. There have been talks of g-tubes, seizures, movement, stem cells, therapies, and the like through facebook, email, and the on the phone. We've discussed guilt and grief. I've shared troubles and triumphs and rejoiced in the smallest and largest obstacles our babies have overcome. These two friends gave me stepping stones and shared what they had learned so I could find strength to advocate for my son and learn to live this new life.

They are the Super Mommies of Makenzie and Cici.

I know I've mentioned them dozens of times. But we finally had the pleasure of meeting today! All three of us. All three of our special babies. And we all met in a "special" place called Casa Bonita. I'm not going to say why this place was so "special" but just know that there were cliff divers and gorillas involved. I'll leave it at that.

We met at noon for lunch with our kids in tow. Our brave little souls that brought us together all in their modified chairs, each one in and out of awareness of what this meeting of the moms actually means to us. I clumsily pushed Christian in his stroller through isles of waiting area surely meant for busy days. Lola was in her carrier slung over my free arm while I navigated Christian in his chair, bumping into all kinds of objects within a 2 foot radius of the moving stroller. After ordering food we went to be seated, hopefully somewhere accessible by our brood. Usually, I would get a little warm in the cheeks wondering if our seating could be accommodated.

But this time...this time I wasn't the only one that had a child who needed special seating. I wasn't the only one who needed extra room. This time I wasn't the only one with a special needs child. There were THREE of us Super Mommies with our Super Babies right there with us. I'm sure we were a sight, but it didn't matter because we were there to stay...for almost FOUR hours!!!

It was an awesome time and all the kids seemed to fair pretty well. Christian tasted honey and lemon wedges. I had about four Cherry Cokes and I didn't want the lunch to come to an end. But, alas, there are lives to get back to and Christian had ABM therapy.

Here are some pictures of our excursion...

Super Mommy Jenny with Super Baby Cici

Super Mommy Pam with Super Smiley Big Girl (Not a Baby), Makenzie

The Gang

Left to Right: Cici (she's got something to say), Makenzie (there's something way more interesting over there), and Christian (a picture looking into the camera, few and far between).

Proud Mama's.

My little guy.

All of our babies different, and yet, the same. They are brave little souls that fight every day to move, stay healthy, and just be.

I received the following story from a list serve I'm a member of. It was right after our lunch and reminded me of our kids - our brave little souls.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.