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Help Jackson meet other kids just like him:

Emanuel's syndrome is very rare. My Jackson is about 1 of 200 in the world. We are having a "family" reunion in Dallas the last weekend of June. Many of these families live far away and travel is expensive. The day to day living expense for a child with special needs is high, and vacations are sometimes rare. Imagine never having met another family who has been through the same things you have. Imagine never having seen another child in person with the same disorder. I can't describe such a thing accurately. It would mean the world to us, to all the families to get a weekend of feeling "normal". I have set up this donation button to help other families with traveling expenses, and hopefully be able to provide catered food so they are not worried about that expense. Below is an itemized list of requests I have received for money. Any amount would be greatly appreciated. Thanks for all you do to support our journey.
With Love,
Jen

Air Fare: Flight from Oregon to Dallas $464 a person (three tickets needed)
Flight from to Dallas

Gas: Family coming from Georgia $300

Rental car: Mini van two families will travel together $450

Hotel: group rate of $69.00 a night

Food: Pizza for about 50 people $150
Subway for about 50 people $150

Caroline

I feel as if I have neglected to really talk about the most adorable, sweet, loving girl on the planet. Caroline is now 21 pounds (which is one pound more than Jackson) she has the cute look of a chubby baby but really is kinda petite. She is serious most of the time studying everything. This is a lot like Abigail except Caroline is more willing to try something (by that I mean put it in her mouth). Most of the day she is exploring the house happily playing with whatever she can find. She is quite attached to me and doesn't let me walk past her without picking her up. Her first word was Bubba. That is what we call Jackson most of the time. She has a special bond with him and has been the best therapy he could have asked for. She loves her big sister and considers it a huge treat to get the play in her room. Abigail has to keep her door closed except on Friday after the cleaning lady has been there. She loves everyone and isn't shy. Willing to let others hold and play with her. I blinked and suddenly she is a year old. The months have run together. We have been very fortunate that she has not been sick at all. Caroline has added so much to our family and we are blessed beyond measure to have her :)

Newest Member of our Family

Meet Suzie Q she is a Pug-Zhu

Mean Girls

At a very young age Abigail has already had to learn about how mean girls can be to each other. Last year there was a girl who made her cry nearly daily. She would say things like "your dolls name is stupid" "if you really want to be my friend you will...." It was constant. So at the ripe old age of five she learned to deal with the fact that words can hurt and people who say mean words to you are not really your friend. I gave you that story only to tell you another. Our neighborhood is filled with kids. That is both good and bad. Her very best friend lives across the street and we love the family; that is the good. There is another girl a few houses down that is not so nice. I haven't witnessed her do anything that bad she just isn't that nice. She knocked on the door a few minutes ago and Abigail asked me to tell her that she couldn't play. I am thrilled because I don't like the girl that much but I think just maybe a valuable lesson has been learned. Only surround yourself with people who are nice to you because life is just to short to be treated like CRAP!!!!

I have been inspired to come back!

More on that later! Ha Ha See I haven't lost my wit. Which might or might not be why you read this. Serious update coming later today.

Surgery

The surgery I have found a way to avoid for almost two years is finally set for Thursday. He will be having his cleft palate repaired and ear tubes put in. I have hopes that this will lead to being able to eat by mouth and speak some words. I am cautiously optimistic. What I really want is for this to help with drainage. Whether it will do anything at all is the real question. I have heard mixed reviews from people who have had it done. The nerves and anxiety are almost too much. I just want it to be over. Abigail is staying with her grandparents so she doesn't miss more school. She is excited and I know things will go well but it is hard to leave her. Caroline is crawling now so keeping her contained will be a challenge as well. The hope is that he is only in the hospital 24 hours. I don't mind taking an extra day if that means he will feel a lot better for the 6 hour ride home. Life is definitely moving to fast. I wish we could just slow down. Chris will be having knee surgery on the 19th. Yeah I know we are crazy, but we have met all deductibles so it was important for him to have this done this year. The doctor was actually being generous getting him worked in before Thanksgiving so he can recover for a week before having to go back to work. If you are reading this and live anywhere near me HELP! I am not good at asking for help I want to believe I can do it all by myself well I am finally realizing I can't. I think the saying is it takes a village.... well the village needs to show up. I am going to need it. i promise to not say I have it covered. If you offer I will take you up on it. All that being said life around here is really good. Caroline is her own way has been the best therapy for Jackson. He is mesmerized by her. He wants to do everything she is doing. I had hoped this would happen and sure enough.. more movement, more eating, more organized playing, they are just adorable together. Abigail likes Jackson better. I say that because he is happy to hang on her every word and play along Caroline is to busy to slow down and do what her sister wants her to do. Business is great. After three years of being in the store I am finally making my goal money wise. I am waiting for that to be constant before raising my goal. Again I will say God is Good and has given us a truly blessed, and hard life. I complain at times but wouldn't trade anything for the lessons I have learned. Thanks for always being my support system I love all you guys greatly.

My Song To Jackson

I pinch myself sometimes to make sure I'm not in a dream
That's how it seems
I close my eyes and breathe in the sweetest moments I've ever known
It feels like home
And here I am I want to be your everything
There you are
Turning winter into spring

And everyone who sees you
Always want's to know you
And everyone who knows you
Always have a smile
You're standing ovation after years of waiting
For a chance to finally shine
Everyone calls you amazing
Yeah
I just call you mine

I fall apart
Just a word from you just somehow seems to fix
Whatever's wrong
Oh, you reach into the weakest moments
And remind me that I'm strong
You've got to know
I'd be a fool not to see you even worse
To forget that you're more than I deserve

Cause everyone who sees you
Always want's to know you
And everyone who knows you
Always have a smile
You're standing ovation after years of waiting
For a chance to finally shine
Everyone calls you amazing
I just call you mine

Nothing makes sense when you're not here
As if my whole world disappears
Without you what's the point of it

Cause everyone who sees you
Always want's to know you
And everyone who knows you
Always have a smile
You're the dream that I've been chasin' after years of waiting
For a chance to finally shine
Everyone calls you amazing
I just call you mine
Everyone calls you amazing
I just call you mine