Special Needs Causes – A Personal Cause – Jackson’s Journey

Special Needs Causes – a Friend Needs Me & YOU

Jackson St. Aubin Scheduled for Hemispherectomy Surgery June 27

Note from Kat: With her permission, I pulled in the second post my pal Caryn posted on her site about our mutual friend Gina St. Aubin’s family and her son, Jackson, who is undergoing hemispherectomy surgey later this month. I published her last post about the Need for an online Family Reunion within and for the Special Needs Community to help support this family and Jackson, who is 9 in a post late last week.

I can’t ask for your help with this family’s needs any better than my friend Caryn can, and what follows in the bulk of her post from her own site, Living with Logan, regarding Jackson’s situation. I’m joining with this cause in the hopes that YOU will also join in. Read all the way to the end, because helping ISN’T always about money, a card as part of the mail flurry would be a great thing as well. I’ll publish a special post later today about a project the mini-Moodys and I will be doing and hope you can help me with that as well.

Now, here’s Caryn.

Special Needs Causes - Jackson's JourneyI 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 .

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 at the New Jackson’s Journey Website.

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:

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!

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!!

 



Katrina Moody

 

Katrina Moody

I’m a Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Writer; Editor; Blogger; Advocate; Friend. NPO Founder: @therarelink @A_RAssoc

Website: http://katscafe.org

Twitter: KatrinaMoody