Epilepsy Warriors ~ A Force to be Reckoned With!

It is my great pleasure to introduce you to a non-profit foundation dedicated to helping our kids with epilepsy, and their families. Founder and president of The Epilepsy Warriors Foundation, Susan Noble, has tirelessly dedicated her time and effort for more than two years to get this truly vital foundation the respect and recognition it deserves, as well as providing a valuable resource which "addresses the ever growing needs for advocacy and research as well as lift the societal burdens and limitations brought about by epilepsy".

Did you know...

• 2.2 million people in the United States, and more than 65 million people worldwide have epilepsy
• In the U.S. more than 300,000 people who have epilepsy are under the age of 14; more than 500,000 are over the age of 65
• Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all epilepsy related death; 85% of these fatalities occur between ages 20-50

The Epilepsy Warriors Foundation is made up of parents and caregivers of children, teens, young adults, and adults who suffer from seizures, and/or have been diagnosed with Epilepsy, Dravets Syndrome, LGS.

Impressed? So was I! But there's more! The Epilepsy Warriors Foundation is hosting a Bridge of Hope Gala Dinner in Chicago,IL on Saturday, April 20 from 6-1030pm at the Holiday Inn Mart Plaza.The dinner will benefit University of Chicago Comer Children's Hospital, Northwestern Memorial Hospital, Changing the Face of Beauty, and The Epilepsy Warriors Foundation. Funds given to the Epilepsy Warriors will be donated toward an Epilepsy Research Center to be located at University of Chicago Comer Children's Hospital, and to the Health Learning Center at Northwestern Memorial Hospital to have more resources for Epilepsy families and patients.

Jere's a little teaser for you: not only will guests of the Gala get dinner, but they will hear Joey LaRocque, former linebacker for the Chicago Bears, and president of Guardian Helments speaking about epilepsy, there will be video messages from Minnesota Gophers coach Jerry Kill, and CBS 2 Chicago News Anchor, Rob Johnson, a silent auction, and entertainment sure to delight everyone that attends.  It will be an evening that every guest will be talking about for months to come.

If you live in or around the Chicago area and would like to attend the Bridge of Hope Gala Dinner, you can purchase tickets through eventbrite by clicking here. If you don't live near Chicago, but would like to help promote the Gala, donate to The Epilepsy Warriors Foundation, or offer an item for the silent auction, please contact Susan Noble (susan at epilepsywarriors dot org). 

Image and links property of The Epilepsy Warriors Foundation, and used here with permission.

The Morning After

Good morning, my lovelies! I have NEWS. I have GREAT news.  I have the BEST news ever! After being up with one monster or another all night last night, and finally getting to sleep at 5am, I woke up at 930 to find this text from Jackson's mother waiting for me:

"We Didn't sleep last night. He can't even take a sip of water without dry heaving. Problem (besides that) is that when he sits up the pressure in his brain changes and and the drainage of the spinal fluid changes and puts pressure on his brain. Poor kid! He hasn't needed Dilantin yet but using regular pain meds. Dilantin could make him nauseated so we're hoping to not have to do it. He has zofran and Benadryl on board for nausea. He has moved both legs and hands / arms, and has spoken so we think everything migrated to the right hemisphere which is all we could have hoped for!!!! He's asked for presents. Asked of he did a good job. Asked to watch toy story... His face is swollen, head swollen, and he's sleepy So, generally good."

Now remember, he's only 12 hours post op at the time of this text. And people?  HAPPY DANCE!!!!!!

It would appear we have been given our marching orders, straight from Jackson himself.  The boy wants presents! I have to admit that I had a little giggle fit with that part.

Keep those drawings, cards, letters, care packages, and pictures coming! Our guy is kicking butt and taking names!

If you need the address for sending something to Jackson or the family, or for other ways to help while Jackson is in the hospital for the next 4-6 weeks, please click HERE

And, as I write, I just got a pic message from Jackson's Momma. He's....sleeping! For the first time in four days. *MORE Happy Dance* and, just like that, my heart melts.

Have a good day, everyone. I'm going to go and snuggle some monsters, and color with them.

Today Is Surgery Day

First and foremost, if you haven't done so already, you need to read last night's update from Jackson's site. You can do that by clicking right HERE. After you've finished crying like I have been doing since yesterday, blow your nose and read on. But please... step away from the computer to do so. I have a thing about snot. Sorry, but them's the rules.

Today, at noon MST, Jackson will check in to the hospital for his hemispherectomy. At 2pm MST, surgery is scheduled to begin and is estimated to take between 4 and 6 hours. The family will be updated hourly throughout.

I love this family. I have grown close to Gina (Jackson's mother) over the last 2 years. I have worked with her online, talked with her for hours on the phone, laughed at things her monsters have done, whined with her about the amount of poop we clean up, the amount of sleep we don't get. I have talked to her daughter when she just wouldn't leave Momma alone, and Momma was ready to lose it. That was so. freakin. fun!! I love it when I hear a little tiny voice in the background asking if Mom is talking to Miss Caryn. Totally do. I've heard screaming in the car amidst promises of "We're going to find a train. We're going to find a train! Oh, look, Jackson! There's one!"

And I wish I had words. But I find that tears have replaced words, and emotions have replaced thoughts, as surgery looms ever closer with each hour that passes, and I try to imagine what's going through the minds and hearts of Jackson's parents. And I just can't wrap my mind around something of that enormity. I'm trying. I'm really trying. But I just can't begin to imagine it. And I hate that I live so far away from the St. Aubin family that I can't be there to hold their hands while they wait.

So, instead of holding their hands, I'm writing for you. So that I can feel like I'm helping, even though it's not nearly enough. I'll tell you about the mail flurry again via video (that will make you cry). I will show you a video of ecards for Jackson that people from all over the world sent to another friend friend of mine, who turned it into a movie for Jackson to see before surgery (that will make you cry). And I will tell you the other ways you can help, which are just as desperately needed as the flurry.

So, wipe your eyes (again), and blow your nose (away from your computer, please and thank you), set up those speakers, and prepare to view. Here we go.

Mail Flurry for Jackson **courtesy Beth Wilde**

Jackson's eCard movie **courtesy Deanne Shoyer**

And now, we're going to talk about those other ways to help I mentioned before. You can send gift cards for gas, groceries, and restaurants, because food at home and hospital, and transportation are not optional. So, you'll find a list below, that are actually clickable links (and I tested every. single. link.) which will take you to online sites for ordering gift cards, if you choose to help in that way. However, if you'd simply like to make a donation to the family, you can do that through rally.org by clicking HERE.

The address for mailing gift cards, drawings, letters and care packages is:

Special Happens / St. Aubin Family
9609 S. University Blvd. #630303
Littleton, CO 80163-0303

Gift Cards for local gas stations:

Diamond Shamrock

Texaco

Amoco

7-Eleven

Circle K

Gift Cards for local grocery and department stores:

King Soopers

Safeway

Walmart/Sams Club

Costco

Target

Gift Cards for restaurants close to home and hospital:

Applebee's

Burger King

Chili's

Corner Bakery

Five Guys Burgers

Jamba Juice

Noodles & Company

Olive Garden

Outback Steakhouse

Panera Bread

Papa Murphy's Take-N-Bake Pizza

Pizza Hut

Quizno's

Red Robin

Ruby Tuesday

Starbucks

Subway

Wendy's

The St. Aubin family has told me over and over again how touched they are with the enormous outpouring of support they have seen over the last week. That's because of you all, the online special needs community, and others who have made it their purpose in life to show the family that they are not alone. Please help me continue in this effort of love and support, and help the St. Aubin family by choosing one of the options above.

Hands and help wanted images via the Google images

And Now... The News

Happy Monday, all my dedicated Monster House addicts! There is SO much to tell you today. Firstly, though... a HUMONGOUS standing ovation to everyone who is participating in Jackson's Mail Flurry! Bombdiggity!!! I have heard several times from Gina, Jackson's mother, how touched and truly thankful the family is for all the love and support they feel with each envelope and package they receive. My cup runneth over, y'all. I'm proud of ya!! Keep those cards and letters coming. And, if you need a flier about the mail flurry to post on your church bulletin board, at a daycare, a library, your pediatrician's office, OT's office, whatever... shoot me an email and I'll be happy to send you the PDF.

Speaking of the mail flurry.. there is a completely awesome giveaway being hosted by my friend Deanne over at Small But Kinda Mighty. Here's all the info. What you do is, click on over to her site using the "completely awesome giveaway" link above. Create an ecard for Jackson using any iOS app, and then email it to babyomum@live.com .If you do not have an iOS device, no worries! Create a paper card, and scan it or take a digital picture of it, and email the pic to the email address above. Now, the cool part about doing this is, THEN you can enter some of her giveaways and gain extra entry points for emailing her the card! What could you win?? 

• $10 gift card to iTunes, Target, or Amazon
• One app of your choice from KidsAndBeyond, and a copy each of 123 Kids Fun All In One and 123 Kids Fun Alphabet.
• Copy of 123 Kids Fun All In One and 123 Kids Fun Alphabet

Seriously.. how cool is THAT?? So, when you're done reading the news report from the Monster House, click on over people!! Deanne wants to collate all the cards that are emailed to her and get them to Jackson so he can see them before his surgery. And people? Surgery is this Friday. Get on it!!!

Next in the news, and just as important, is a need that became known to me late last week. Jackson needs a weighted blanket. And he needs it now.  Any of you that have little monsters, or even big monsters, with sensory issues know how helpful a weighted blanket can be. And you also know how seriously expensive they are.  Carl from Why Not Fathers has posted about this and has a great idea for getting them the blanket they need. Check it out by clicking the "great idea" link above. In case his idea doesn't work(and it might not), we are running a little fundraiser. We need to raise $300 pretty dang quick. It's not a lot of money, and it will purchase the weighted blanket Jackson needs. Please help, whether you donate $2 or $20, your contribution is enormous. Your help in promoting this fundraiser is greatly appreciated. We need to get the word out, and we need to do it quickly, so I'll ask you to please share this to facebook, twitter, google +, whatever social media you use, please post. Donations can be made through rally.org, and the info can be found in the next paragraph.

This brings me to the last bit of news for today. Sober up, y'all. And pay close attention. This part isn't going to be all fun and glitter. Here we go. Jackson's surgery is this Friday. As in, four days from now. That's quite a reality check, isn't it? On Friday afternoon, the halves of Jackson's brain will be separated. And no one is really quite sure what the outcome will be until they see it. And this is where it gets real. On Jackson's official site, there are not only daily updates, but also links for donations to the family through rally.org, and a page full of resources for those of you who would like to send gift cards for gas, meals, or groceries. Addresses for care packages and other resources can be found there as well. Remember, these needs start happening this weekend. THIS WEEKEND. The hospital is 30 miles away, which will make their gas costs soar. Gina and Hubs will be spending all the time they can at the hospital with Jackson, and will need to eat. The sibs will be tended while Gina and Hubs are at hospital, and there will HAVE to be groceries in the house. I think of it like this: if it were one of MY monsters having this surgery, I know Gina would be posting things like I am. I can't do any less for her, Jackson, and her fam.

I am continuously astounded at your generosity. I am regularly brought to tears with all you do for others. I know it's a lot that I'm asking. But, I'm asking. Because you would do it for me.

Broadway standing ovation image via The Producer's Perspective

Answering The Question "How Can I Help?"

If you would like to know what other ways there are for you to help the St. Aubin family now, during the hospital stay, and after, besides the mail flurry, please read this post. 


The St. Aubin family would like to express their love and appreciation to all of those who have already participated in the mail flurry. They are overwhelmed with the enormity of the number of people willing to help them at this difficult time.

Keep up the good work, everyone!! Don't let up! Don't stop! Keep those cards, letters, banners, drawings, and care packages coming! Need more info? Have an idea for something you'd like to do, but need to ask a question or twelve? Shoot me an email at frazzledmomma@livingwithlogan.com

Video credit to Beth Wilde. I love that Wildel8y!!

Watching Miracles

Yesterday, I spent most of my time on facebook watching miracles happen. I am so overcome with emotion because of this, I simply had to share. No matter how many times I will be allowed to see something like this, the wonder and the awe will never, ever go away. Ever.

Here's how it went down. Yesterday morning. I went to a particular fb group of ASD parents I belong to, to beg for help on behalf of the St. Aubin family, for a mail flurry. Don't know what I'm talking about? Haven't got the foggiest? I can help you out with that. Click here for the skinny. (No, I do not need to know how the previous sentence shows my age. Let's move on.) Okay. Is everyone up to date now? Good. This is the fun part!

Suddenly, all over the facebook was this status update, that people copied and pasted on their personal pages, their blog pages, just... everywhere! It showed up on well known blogger pages. It showed up on pages of people I have never met, but who wanted to help. It generated a LOT of interest. And seriously? The weather report for the Post Office in Littleton, Colorado is now "100% chance of flurries" until further notice. Dress accordingly, postal workers! Also... put in for some overtime. Because love for the St.Aubin family is going to begin to manifest itself through the US Mail. Eat yer Wheaties. Get some rest this weekend. I'm just sayin'.

While I was all giddy and entertained watching this happen, other things started to happen, too! Bloggers started posting for the St.Aubin family. Check out this awesome post over at Seven Yuckmouths and Autism! And it doesn't stop there!

An artist (who was a childhood friend of mine) saw my post on my personal fb wall. Sorry, Jackson's Momma.. you were excluded from seeing that post, on purpose. Some things in life should be surprises!! Because she has epilepsy herself, Jackson's story touched her deeply. She is creating a triple canvas masterpiece custom made for Jackson, with a train and a rainbow. She is enormously talented, and I can only imagine the love and good wishes that will be put into such a gift with each stroke of the brush. The image above is the rough sketch. This is a rough sketch?!?! I'm intimidated by people who can successfully draw stick figures, and this is way more better than a stick figure. Can't WAIT to see the finished product on canvas!

Y'all have really come through.. again.. but I expected nothing less from all the amazing people we call family within our special needs community. From the bottom of my heart, thank you. Thank you for coming together to show the St. Aubin family how very much we all care about them. I know for a fact that they are touched beyond measure. But don't stop now!!! We're just getting started!

If YOU would like to help with the mail flurry by sending a card, picture, care package, or letter, or have other ideas for ways to help, please email me at frazzledmomma@livingwithlogan.com, connect with me on facebook, or tweet me! I'll be happy to connect with you.

Miracles quote by Google images, via everyday-miracles.net

Train image via Amber Tilley

Jackson's Journey

Good morning, Monster House addicts! I have updates for you about Jackson St. Aubin and his upcoming hemispherectomy surgery. If you have no idea what I'm talking about, read all about it here. Okay. Now that everyone's on the same page, here are the updates! Jackson's surgery date has been set for June 27 at 830am. That's not very far away, and there is a lot of preparation to be done. Because so many wonderful, fabulous, awesome, and incredible people love the St. Aubin family (what's not to love? They're phenomenal!) and have expressed their desire to stay in the loop as time goes on, Gina has been working with her web designer fast and furious to get a site up and running with all the pertinent info. This site will remain active throughout  preparation, during surgery, throughout the recovery process, and beyond. You can take a peek at their brand new site, and sign up for email updates to Jackson's Journey by clicking here. Gina will be updating throughout, so you'll have access to all the most current happenings.

In the right sidebar of the Jackson's Journey site, there are ways to help the family. If you are in the Denver area, a Meal Train calendar has been established. However, if you are NOT in Denver, but still want to provide a dinner, a gas card, or send a care package, you can do that too. A page of resources for gas cards, restaurant gift cards, likes of the children in the family, and other important info has been attached to the site and will be updated with Jackson's room number in the hospital when he is out of ICU.

Having the privilege of being Gina's good friend, I get to talk to her late at night about all kinds of things when we're both online and our little monsters are sleeping. During one of these calls, I asked her what she needed most from me~ really, what she needed most from anyone. I loved her two part response.

Firstly, and most importantly, they need a mail flurry. By that, she means they need a flurry of cards and letters for Jackson. Drawings in crayon from other children. Cards with brightly colored pictures. Links to YouTube videos of people wishing Jackson well. There's a reason for this. For the first while after surgery, Jackson will be allowed no sensory stimulation at all. His room will be dimly lit, and there will be no colors or loud sounds. This is necessary for the first little while. Once he is able to be moved to a room out of ICU, his brain will NEED colors, and words, and pictures. Already Gina, being the amazing mother she is, is making videos of his favorite things in preparation of this need. I think we, as the St.Aubin's online family, need to step up to make sure his hospital room is wallpapered in cards, drawings, pictures, and letters. Think of this as therapy for his brain. Because that's really what it is. Gina would love to see mail from all over the country, and even from all over the world, to share with Jackson as he recovers.  Here's where the mail flurry should be sent:

Cards/care packages/ letters:
Special Happens / St. Aubin Family

 9609 S. University Blvd., #630303

 Littleton, CO 80163

Secondly, the family has decided this is the time for a Fun Raiser. In the days before surgery, they are going to have fun doing all the things Jackson loves, such as taking day trips and riding trains... and things the family loves to do as a whole. So, we're fundraising for their Fun Raiser. Donations are being collected through rally.org and can be made by visiting this link. Donations made to this fund will be used for the Fun Raiser, as well as other expenses. This is what is known as a "disposable dollars" fund for things such as gas for trips to the hospital, housecleaning services, babysitting fees for the other 2 amazingly gorgeous St.Aubin monsters, yard care, meals at the hospital, etc.... all those expenses that you never really think about, but which add up fast. By donating, we're making sure that the focus is where it should be ~ on family time prior to surgery, then Jackson's surgery and recovery and proper care for his siblings during that time~ rather than on worry about all the little things that need done and paid for.

If you are a blogger, and would like to help pass the word about the St. Aubins, surgery, the Fun Raiser or  the mail flurry, please DO!! And, we have a nifty neat-o button for you to put on your site just for that purpose! Check it out!




<a href="http://JacksonsJourney.SpecialHappens.com" target="_blank"><img src="http://specialhappens.com/custom_images/JacksonsJourney150x150.png" alt="Jackson's Journey" width="150" height="150" /></a> Okay. I know this is a lot of information all in one place, and I have a couple more things, but I promise to make it as painless as possible. To connect online, visit Jackson's Journey on facebook , connect on twitter @GinaStAubin, or email JacksonsJourney@SpecialHappens.com

Spread the love, addicts! Spread it far and wide! We have 19 Fun Raising days left. Let's raise the roof! I would absolutely be on cloud nine if there were sacks of mail and piles of YouTube links waiting for Jackson before his surgery. The clock starts now. As of today, we have 20 days until surgery. Let's get this done. And let's do it in the way we have shown before. Big, and loud, and POWERFUL!! 

It's Time For The Family Reunion

This week, I heard from my dear friend. A friend that I would do anything for. A friend that I have laughed with, and cried with. A friend who has never failed to be a source of support for me and so many others. Who selflessly, tirelessly does so much for so many, and never asks for a thing in return. She is the mother of a special needs child. And she is my inspiration.

We have had long conversations, and short ones. Talked about kids, men, and injustices of life (most of which involve the cleaning up of poop). We have cheered for each others' children and worked together. She is my "Go-to" person when I need sound advice from an advocate's stand point. You all have seen her work here. You have seen my work on her site. You may know her well, or not at all. She is the phenomenally talented Gina St. Aubin of Special Happens.

Because her writing is second to none, I'm going to let her tell the story, and then go on from there. She is writing about her son, J. And it is ONLY with her permission that I am publishing this very sensitive, very raw, very real excerpt. Read on:

We’ve had a series of appointments in the last two weeks.  PET Scan and MRI (both under anesthesia), NeuroPsych, 2 days of infusions, a LONG appointment meeting the Rehab doc, NeuroPsych again, one of two neurosurgeons and our epileptologist, and the then second neurosurgeon today.  They have had what they call a “conference” and presented J, his EEGs, all testing etc to 20+ doctors, therapists, social workers and more tonight.  

Honestly within the last 2 days, we have been hit with a couple of bombshells that have literally knocked us back and taken the basis of the genesis of all of J’s diagnosis and turned it upside down.  We are taking some time to absorb it all, so if we don’t respond, please don’t think us unappreciative… we are just… overwhelmed to a new level with the enormity of decisions we have to make. 

To make it simple (which it's not), here’s the gist:
It has been said, since J was 9 months old that he had an intrauterine stroke.  It was explained to us by a neurologist that he could see that it was within the 1st trimester because of the development of J’s brain on the left side.  It was explained that it was the left frontal lobe only.
It’s not.

 The MRI shows that the ENTIRE left hemisphere of J’s brain is malformed.  All of it.  There is absolutely NO indication of an intrauterine stroke.  It also did not happen at birth.  It looks to be the true example of “sometimes these things happen”.  And, quite honestly, a miracle that he's here...and functioning as well as he is.

The EEGs have been showing his seizure activity as focused / limited to one area.  That’s not so either.  It’s actually the entire left hemisphere that’s not only malformed but is also constantly seizing.

 One significance of this, besides the misdiagnosis, is that *that* misdiagnosis has lead us and J down a wasteful road that NO medication...NO medication would have EVER touched the epilepsy because of the malformation.  He would have had this subclinical epilepsy since a young age...likely since the age we starting asking doctors why he wasn’t sleeping… 1.5 - 2 years of age.  

Since NO medication will have (or will ever) work because he has a malformation of the entire hemisphere, surgery would have been his only option - this whole time.
Herein, the surgery….the surgery is necessary to stop the left side from it’s constant seizure status.  100% of his days and nights are in subclinical seizures.  Eventually, the one medication that’s holding them to a subclinical level will wear out … again because NO medication will stop it … and J will then be in a full blow constant outward (clinical) seizure.  That - again - no medication can stop

All the activity that this left hemisphere is doing is also keeping the right side (presumably healthy) from functioning properly.  The longer the left hemisphere is there being ‘busy’, the higher the chance the right hemisphere has of taking on the subclinical or clinical seizure activity.  In other words, in order to keep the right side healthy, we have to stop the left side.
Which means…

The brain surgery that we once thought was so serious has become even more serious.  Where we thought we were having to take a sliver of an already unhealthy (but small) section of a hemisphere out…
We have to disconnect the entire left hemisphere from the right.  

That means, a piece of his left hemisphere would be removed in order to reach the central connections (center) of his brain where they would disconnect the two halves.  It’s called a Hemispherectomy.

He has been approved for this operation this evening.  However, the conference doctors have requested that the entire team sit down with us one more time and really go over the pros and cons.

Obviously there are a number of side effects and possibilities.  These are all being weighed out.  In the end, the choice we are faced with is to watch him deteriorate slowly, eventually needing this brain surgery or a brain surgery that also involves removing a portion of the right side too… or give him a chance.

It’s late tonight. We’re exhausted.  I’ll email the rest...but basically, we will be looking at 3 days to 1 week in ICU.  2-4 weeks of intensive rehab IN the hospital Monday - Saturday, then another 6-8 weeks of intensive rehab at home.  He will be lethargic.  He will be unable (and likely un-wanting) to swim, jump, run, play…).

We won’t have a date until after we speak with the team again, which is thought to be able to happen early next week.

Please rest assured that this decision is not light, but the heaviest, most difficult, "unfair" decision we can make.  This has been reviewed heavily by the ONLY 6 pediatric epileptologists in our state, a number of neurologists, a neuroradiologist, all neuro-whatevers, therapists, 2 neurosurgeons... this is not a fast decision.  

J is now 9 years old. And he will be undergoing major brain surgery very soon. This summer, in fact, though the exact date is unsure. It goes without saying that you will be reading a lot more about J in the weeks to come. Since this email (written 5/15) was sent, many have expressed a desire to help the St. Aubin family before, during, and after the surgery takes place.

This is something that will affect their entire family. And here's what I know. I know that the special needs community via blogs and social media is strong. I know that this community is a family just as much as any family is. And it's time for a family reunion. It's time to band together again. To show our strength, our support, our love and friendship. It is our time to shine. We've had a nice hiatus, now it's time to get back to work. 

We have done this before. We have really made a difference. So there's no question about whether we have the means necessary to be successful. We all remember Deeds. We all fell in love with him and his family. This time, it's even more important. There are things that will become necessary while J is in the hospital. Things that will have to be taken care of that Gina and her husband will be unable to accomplish, because they are taking care of their child. That's where we come in.

Over the next week as plans take shape, I will post and ask for help. Other bloggers will post and ask for help. I will ask every blogger I know to consider posting about the St. Aubin family's story on their sites. I will ask their readers, my readers, and Gina's readers to leave messages of comfort and strength. I will ask for... everything. Because it. is. necessary. This family needs the support we have to offer. And I won't apologize for asking. 

At Gina's request and mine... please keep them in your prayers. Whatever your religion, whatever your opinion, they need peace. They need comfort. If you have ideas, or questions about efforts to be made on behalf of the St.Aubins, please don't hesitate to toss me an email at frazzledmomma@livingwithlogan.com.

Images in this post from the Google

Jackson's Smile

There's something about a child's smile. The look of wonder and delight all over their face that makes you smile in return, and feel better for it.  The freshness and innocence of youth that allows them to find magic in things we take for granted. Their absolute trust in us to take care of their every need. Think about it. When you were a child, did you ever worry about a house payment, whether there was enough money left in the bank for groceries, or how expensive this year's round of school clothes and supplies would be? Of course you didn't. You were busy being a child, working at the business of taking life in and enjoying every  drop of it. That is, after all, what children are supposed to do.

As we grow up and shed the innocence of youth little by little, we become more serious, more saturated in the  stresses and drama of life. More focused on being a responsible adult.  And then there's the day that we become parents ourselves. We suddenly realize that the fate of this tiny little person we hold in our hands directly after birth is completely dependent upon us. And we are thrilled to have the responsibility. There will be times that we wish our child came with a manual. We will lose sleep, worry about the silliest things, and carry pictures in our wallets. We will cry with pride in their accomplishments, and we will cry in sympathy when they hurt.

We already know that there is nothing we wouldn't do for our child. But now we've learned that our child needs special attention. He is diagnosed with Cerebral Palsy at nine months old. In the next couple of years he will also be diagnosed with Autism, Sensory Processing Disorder, and global Developmental Delays. Finally, after a long road traveled trying to find answers for his sleep disturbances, Landau-Kleffner Syndrome turns out to be the latest diagnosis to add to the list at 6 years old. And we tell ourselves to be strong. We accept the diagnosis, because there is no other option. At least we have something to go on now. And we, as parents, continue to go about the business of taking care of our child's every need. We have more, and newer stresses, and we start to forget the magic and wonder.

The medical bills add up. Some the insurance covers. Some, it does not. You apply, and are denied, SSI. The  only silver lining is that you have the option of medicaid as a secondary insurance resulting from being declined SSI for your child. This all sounds great, right? Medicaid to cover co-pays and the portion of procedures, testing, and therapies that your primary insurance won't. It's not great. You've found something that will help your child. An IV infusion called IVIG recommended by your epileptologist. It's scarily expensive. And it's not covered.

Let us pause in our story. I want you to scroll up to that picture at the beginning of this post. Only this time, I want you to think, "This is Jackson." Now. If Jackson were your child, could you look at him, witness his wonder and his smile, and then say you wouldn't move heaven and earth to get him the infusions he needs to calm his seizures? Of course you wouldn't. You would take out a loan on the house, you would work all the overtime hours humanly possible. You would do anything... ANYTHING.. to help your child. And that is just exactly what his parents have done.

Everyone, you have just met Jackson, son of Gina, who writes over at Special Happens. Isn't he just gorgeous?? I'm completely in love (don't tell the Daddy).  I'm introducing Jackson to you today, because I just can't deny him the infusions he so desperately needs. Can you?

Gina's family is starting a fund for Jackson's medical expenses, and we need YOUR help to spread the word.  Please tweet, post to facebook, blog, or donate. There are a multitude of ways to help this family, including submitting a guest post to Gina's blog so she has one less thing to worry about when Jackson starts his first round of infusions, beginning this coming Tuesday.

This will be an ongoing commitment on my part, to do everything I can to make sure Jackson, Gina, and the rest of the Special Happens family is taken care of. What will your commitment be?