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

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!!

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?