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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

Busy!!!!!

I have been busy working on orders as well as new stuff lately. I am working hard to add things to Etsy in an attempt to sell things outside of my city. I have discovered facebook as many of you know. This has been my new form of keeping in touch. I promise not to let the blog get cobwebs and be pushed aside. Abigail will be starting Kindergarten in less than two weeks. Yikes!! Yet I may have more time to get things accomplished. We will see, there will still be two little ones at home. Caroline has figured out how to roll over. We are so proud of her. I have forgotten just how quickly they catch on. Jackson was doing some half rolling of his own but watching little sister must be inspiring because he has taken off. Literally off the bed and across the room. He is now mobile. YEAH!!! I was hopeful that Caroline would be able to teach him things but I had no idea it would start this early. Family life is great right now.

Things are looking up

Life has been a little better lately. Things are starting to fall into place. Such as Caroline has slept through the night for three nights in a row. That is huge. She may be getting herself into a routine and that makes my life have a routine which is so necessary to me. Lots of new stuff with Jackson and his services have been looking up as well. He is still on the same program but I am learning all kinds of new things that so one bothered to explain. I have been feeling alone in all of this lately. I have wonderful friends but.... at the end of the day there struggles with their kids are not the same. I found myself at the doctors office bawling and have a breakdown when he simply asked how life is going. Needless to say a prescription for happy pills was written as well as a strong suggestion to find friends with similar lives.
This is the part where God intervenes. Someone I hadn't talked to in about a year called me by accident. Seriously she was trying to call someone else named jennifer in her phone. She took care of her special needs grandson by herself until he passed away. She has been through it all. See what I mean about intervening. Wait it gets better. She left her job as a teacher after her grandson died and went back to school to pursue a masters in social work. Realizing her heart belonged to helping special needs families. She just got hired to be the case worker for the program Jackson is on. She is now in charge of helping me. Someone I know and trust is going to make sure we get everything we need.
God is Good!!!!!!


My mind is still trying to warp around this amazing new development.

Etsy!

New Etsy shop up and running will be adding items like crazy the next few days. Take a look. Link on the side bar.


Love Ya!

45 Life Lessons

Got this from another blog and thought you might enjoy it as much as I did.
Have a Blessed Day!






1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words 'In five years, will this matter?'
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles.
34. God loves you because of who God is, not because of anything you did or didn't do.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative -- dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's, we’d grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
44. Yield.
45. Life isn't tied with a bow, but it's still a gift.

A Few Completed Projects

Priceless Peptalk

I Love Peyton Manning! One of my all time favorite commercials

Respect the Van!

Just bought a new black Honda Odyssey Loaded! What more is there to say. Now who's going to make the payments?

Big Sisters are the Best

Abigail is serious about him doing his "homework" things the therapists want him to work on. Jackson is finally able to sit in the bumbo seat without falling over constantly. The first picture is to show the marker that is all over his hands. Abigail is working with him to learn to write. He is doing pretty well, and enjoys putting marks on the paper. I don't know where he would be without her. They have a truly amazing bond.

Sounds Like Hi To Me!

This is for all the grandparents who live to far away to enjoy in person! Hint Hint


You might want to pause the music at the bottom.

feelings

All of the things we were trying to get for Jackson have been approved! He will have a new bath chair, the britax special needs car seat and an amazing stroller wheelchair combo thingy called the kimba stroller. This is like Christmas. Our next big thing will be to try for the sleep safe bed. This is a twin size bed that has plexi glass railings like a crib. He really needs something since he is getting more mobile. I really think his congestion would be better if he had a bed that elevated also. So we will try.








Not much else going on school is now out so everyone is home. It will be nice to have the extra help around the house. Speaking of extra help Jackson's nursing hours have increased from 17 hours per week to 51 hours. Yeah I know quite a jump. I still haven't decided if I will use more hours or not. Mommy guilt has kicked in and I can't seem to just give in and have the nurse come more often. Post pardum is rearing it's ugly head these days. I am dealing with a lot right now. Nothing major just having a hard time with knowing this is the last baby. I realize I made this decision but that really doesn't change the emotions of it all. It's funny I can remember telling my mom that I wanted to do more with my life than just be a mom and here I am with three amazing children wanting nothing more than to just be mommy.

I'm Obsessed

This is what I do I am an obsessive personality. I love spray painting furniture. I now look at everything and want to paint it. Only now I am running out of things in the house. Now I want to search for things to paint. But what am I supposed to do with it after I am finished? I really don't know. That's when you realize you are obsessed. I went to the habitat for humanity restore yesterday. Lots of junk but I now can see the possibilities. I am wanting to go back. See obsessed. Couldn't sleep thinking of all the things I saw and want to refinish. I have been looking for a piece of art to finish our front room. I can't find anything I like. I bought a set of swinging doors to hang on the wall. They will of course be re finished. Wish me luck.

space for crafts

When Caroline needed a room I lost my craft room. The things we sacrifice for our children. I had attempted many spots only to end up with stuff everywhere. The kitchen table has not seen us eat there for a few weeks now. Things were getting out of hand. Then the brilliant idea came to me. Honestly I was expecting Chris to shoot it down so it was a half hearted idea. Only much to my surprise he not only like the idea he started moving things around immediately. We have a very large bedroom. So I thought what if we pull the king size bed to the middle of the room and create the wall behind the bed as a craft area. I then want to have a curtain run the 16 feet across the room to become a backdrop for the bed. Sounds great and things are completely torn apart now but how the hell are you supposed to have a 16 foot curtain run the width of your room? That part I am very open to suggestions. If this project works go us otherwise a lot of work went into a giant mess. Wish me luck and a big margarita at the end of the day.

projects

Just a sneak peek at all the fun projects I have been doing! Aren't I a tease He He

This bench was a nasty yellowish wood with a floral seat. I paid to much 15.00 but really thought it would look good in the entry way of the house. Love how it turned out. A black can of spray paint and a remnant of fabric.