What a Christmas

Christmas was a blast! We didn't do anything. No one came to our house we didn't go anywhere and it was wonderful. I wouldn't want this to be the norm but it was great not having to cook a huge meal or smile through gritted teeth at some members of the family. Abigail got up about 7:30 and wanted to check the reindeer food and yes the reindeers ate it all up. She then had to check the cookies she so diligently made with love. They were gone too. Then the big thing she asked for seemed like an impossible toy from Santa, but since Santa is an avid Ebay shopper her fantasy came true. She asked for a My Little Pony Nintendo DS with sparkles. Yeah no joke. Well, apparently you can order covers in just about anything your heart desires and it got here in a very timely fashion. It even has her name on it. We opened the fifty toys over the course of the day. I hate opening Barbies they have too many pieces and they are all attached with rubber-bands. My aunt out did herself this year and surprised us with a Wii. I wouldn't break down and buy one so.... We have had a blast. It really is worth all the hype. Abigail has caught on quickly and will soon out pass us on ability. Jackson thinks it's hilarious to watch us play. He has really been laughing so much more lately. We must look goofy to him. He had gained 1 pound. I was hoping for more but a gain is a gain and I will take it. Chris still has a week off so I am trying to come up with more projects. He isn't impressed. Chris' dad gave us money for Christmas and we decided to buy a wall of bookcases. Well I had no idea bookcases would be so hard to find or so expensive. Needless to say this debate is ongoing in our house. I am so cheap! I think he will wear me down but I'm trying to hang in there. He continues to remind me of my quest to have the house just the way I want it. He is very good at this. Part of the problem is there is a matching office computer desk. We have been wanting one for a while. We have had the Wal-Mart versions that break or are impossible to move without breaking. Anyway. I will let you know who wins this one. Love you all. Be safe Hope you enjoyed your holiday just as much as we did.

Feeling Better

So I didn't want to leave my last post as the most recent one. I am feeling better and just had a bad day. That will happen from time to time. I have thrown myself into my annual holiday baking I have made pan upon pan of fudge, hopscotch, and ginger snaps. I wish I could say I have refrained but....... All the presents have been wrapped and are under the new tree. Chris and Abigail will be out of school tom. for two weeks. Right now I am excited as I have many house plans. I will be 30 on the 23rd. Amazing I'm still standing and doing pretty good for 30. I am treating myself to a haircut in the morning. I hope I like it. It will be quite a change.

One Wish

I sit here with tears streaming down my face. Sometimes you can't escape what is. If I could have one wish it would be to heal my sweet baby boy. How is this the life God wants him to live. Another therapy has come and gone and still no miracle break through. Abigail acted up yet again, wanting the attention. I just can't help being sad at the necessity of therapists. I am definitely having a why me moment. Every day there is something to make me realize just how abnormal our life is. How much I want for Jackson and the doubts that creep in about his ability to ever do things. Just one wish. That's it. I need to somehow believe the possibility exists. Yes I realize I have to deal with what is and not rely on some miracle to change the situation. I am thankful for all the lessons I have learned but not today. I just want to hear him talk and see him run through the house. I want these things more than I've ever wanted anything. I want him to be all boy breaking things and putting toys in the toilet. At times the pain is just too much.

Sweet Caroline

Today was one I had spent weeks stressing over. I had an appointment with the at risk doctor. He has the really fancy equipment and we were to get the 20 week ultrasound done there. I don't think I would have been so stressed if this was not the same doctor who had the privilege of telling us things would be wrong with Jackson. I remember every detail of that appointment 20 months ago. I thought I was going to talk to him about pre-eclampsia and when I was going to deliver early, instead it became what would start the nightmare of fears for our baby boy. One of the things I told Chris this morning was as scared as I am I think if he is the one to tell me everything is fine I will finally relax and believe it. After two hours in the waiting room we were brought back to the same room the room. I was surprisingly calm, nervous but calm. Then we saw her-- she was sucking her fingers, then she yawned and started moving and kicking around. Every measurement was right on schedule. Our baby looked perfect. The dreaded doctor came in to take a look as well. He remembered every detail of Jackson and found a way to show me that all of those things were fine in Caroline. It was an amazing appointment. Our genetics counselor came in to watch the ultrasound too she has been through hell with us and cried with us. Now we got to cry tears of joy. I feel so great right now! Thanks for all the prayers you knew before I did things were fine.

Water for Christmas

Chris and I were just talking about Africa. There was a story on the news about how bad the water was and the amount of people dying from disease. As I was reading another blog she posted about this great organization that drills wells for water in Africa. For twenty dollars you buy one person water for twenty years. My water bill was sixty five dollars last month and I didn't think twice about what that means or how much I am paying for all the long hot baths I take. We have it good people. Consider helping out. You can click on the picture on my sidebar and it will give you all the details. Have a blessed day!

BUSY!!!!!

We have been doing serious clean out around here. This is by far the most nesting I have ever done. I had a guest room that doubled as my craft room. If you have ever witnessed this you know what I mean when I say I could have opened my own store. The stuff was piled high and the closet unable to reach or close that door. I should have taken a picture of all my shame but you will just have to imagine. That room had to be completely cleared out for Chris to paint over the Thanksgiving break. Sometimes being a teacher rocks.(He had the whole week off to work on the house) I threw away countless trash bags and bagged over 20 bags of stuff for goodwill. Abigail's new room is painted and she has been living in it about a week. We are getting new carpet for all the kids rooms on Wednesday, so the rooms are somewhat torn apart because they don't want anything on the floor but the big furniture. Last night Chris primed and painted Caroline's room white. My friend will be adding lots of color so we went back to plain white walls. I guess it took having that third child to make me really get in gear. I have complained about my house being so full for years now. I did most of the damage by my shopping. I think I have had an important break through in the last few weeks. I am finally doing something about my problem house. I thought when we bought a house with almost 3000 square feet we would never fill it. HA HA HA HA HA HA!!!!!! I am trying to take my anxiety about the baby (something I can't do anything about) and put that energy into the house (something I have the power to change) See the break through? I'm feeling really mature right now. Go Me! The only Christmas decoration I have out is the tree. I didn't think I could get away with not putting it up. I just don't want to add to the clutter.

Pics!

A new day

I feel much better. There is something therapeutic about writing your feelings, exposing yourself to others thoughts. I ordered Caroline's bedding this morning and have been busily working to clean out both girls rooms. I have decided to get new carpet while we are at it. I haven't finalized that and am going to attempt to haggle my way into a better deal. I really didn't want to spend more than 2500 for the three bedrooms and the hallway. It is going to cost about 3300 so I may have to go back to the drawing board. I am working hard to reassure myself that what ever happens is by design. Something I know all to well but for some reason I don't think you can completely surrender to that.


I refuse to spent my last pregnancy upset about what might happen. I want to enjoy every moment and realize what a miracle this truly is. I am getting another girl!!!! I have so many hopes and dreams for our family. I try so hard not to give into dreams afraid of the disappointment if they don't come true. This is nonsense. I realize that now. To live a life afraid of the unknown is not living. I will probably slip up from time to time, but I will try hard to keep this attitude up.
Thanks for all your words of encouragement and prayers, they really do make a difference!

Randomness

My crazy life. Where to begin. I have been all over the place lately. Pregnancy hormones not so great. I have found myself in constant panic mode. I have spent the last two years getting myself to the "good place" I had given up the idea that i was in control and had found a way to accept things as they came. Did you notice the past tense in that sentence. I have worried and stressed the last 16 weeks about things I have no control over. I have been irrational and prone to cry. Again I blame hormones. I go to the doctor every other week because of my high risk status. My experience with Jackson and the five months in the hospital not to mention the emergency birth have scarred me in a way I can't put into words. I idea of doing all that again sends me into a panic attack. I thought being told she was healthy genetically would elevate that. I was wrong. I so desperately want to calm down and enjoy what will be my last baby. I want to glow and be ecstatic. I'm having trouble doing that because of fear. I am fine as long as I stay busy which isn't hard but if I ever have any down time I am thinking and worrying. Any tips on how to chill out would really help.

Switching gears. I met with the nutritionist and she says he is getting half the calories he needs. Crazy I know. So we are starting on a new formula and this formula can be ordered through our nursing service which means medicaid will be paying for it. That is a huge weight lifted. Hopefully this will provide Jackson with the much needed energy and nutrients. I am really excited. I have given in and will now have his nurse 16 hours a week instead of five. I love her she loves Jackson things are amazing on that front. I am excited I won't have to get him out as much as the winter weather is starting.

I have picked out bedding and figured out Caroline Rose's room. The bedding is called the John Lennon collection. It has bright colors hot pink, lime green and turquoise. The bedding says All You Need Is Love. I have already bought her a lava lamp as a night light. Tisha will be painting large flowers and peace signs on the walls. It will be so cute. I am losing my sewing room. I am moving Abigail in there and the baby in her room. This is really more work than necessary but the sewing room has better closets and when she's older she will be glad she has that room.

The song in the back ground is coldplay. I heard Chris listening to it the other day and asked him about. He was surprised I haven't heard it and said he listened to it over and over when Jackson was in the hospital. He finds it symbolic in a very different way than I did. As I listened to the words I found myself thinking of it as me talking to myself. Saying as I go through all of this my life I will continue to try and fix you. I hope you find meaning in it for yourself as well. I can so easily identify with music and treasure a song's ability to put my feelings into words. Love you all.


Fix You Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down on your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
If you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Don't forget to pause music at the bottom to watch video!

Barlow Girl- Never Alone ( WITH LYRICS)

weight loss

I am frustrated. Jackson has been steadily losing weight for a while. He is eighteen months old and only 13 lbs and 14 oz. About six months ago he was 16 lbs. The next time we checked he was 14 lbs. 6 oz. then todays weigh in was the 13 lbs and 14 oz. I have been trying to get a nutritionist to see him. Apparently that takes an act of congress. His pediatrician who I thought I loved in starting to frustrate me too. he said that Jackson could move to a new formula called next steps because he is older. I looked at the ingredients and they are the same as what he gets now. I'm not sure how that is supposed to help. Those of you who have tube fed babies please direct me. What type of feeding schedule do you have. I think I am starving him but how am I supposed to know.

Big News!

I am so sorry for the month long hiatus. In my defense things around here are big time changing. I found myself unexpectedly pregnant. Yes I know you just had to reread that word. We have been pretty tight lipped about it for the obvious reason of genetics. We had saddled the fence on whether to have another baby for a while. Should we take the chance and how would we survive having to hear another baby was going to have problems. We had made some hard decisions concerning the pregnancy and were trying to move forward with whatever would happen next. Everyday I found myself thinking I didn't have a miscarriage today, but there's always tomorrow. We then made the decision to fly to Dallas and have a test called a CVS. That tests the placenta and does a DNA test. I had the test done on October 1st. The real waiting began. I jumped when the phone rang and spent hours imagining what the phone call would sound like. Chris who is always the champion in these situations had the best of hopes, while I wouldn't allow myself to be happy. All that being said I still played around with names looked at nursery bedding and made so many plans. I guess you can't stop yourself. The phone rang at 8:15 in the morning as I was trying to get Abigail ready for school. The ID said out of area so I almost didn't answer it. The women said This is vicki from Dr. Weiss' office and thank goodness I was in the kitchen near a chair. My hand was shaking and I'm pretty sure I stopped breathing. She continued to say everything came back 100% normal, would you like to know the gender? I started bawling and shaking harder.





WE ARE HAVING A HEALTHY BABY GIRL!






I for some reason still have trouble believing it. I can't seem to relax even after being told things will be fine. I know too much now I have seen too much. I was severely pre-eclampsic with Jackson and that is why he was two months early. I am trying to stay positive. Things will be changing big time around here. The baby is due April 23rd. Please pray that everything goes smoothly with this pregnancy.

Martina McBride - Anyway

I listened to this song about a million times when Jackson was in the hospital. It brought me great comfort and strength. I saw the video for the first time yesterday and wanted to share it with you.


Click on link to watch video click here



I challenge you to go for it. Whatever " it " is for you. Make your dreams come true. Be an inspiration to those around you. Nothing is impossible.
I would love nothing more than to hear your story as one that defied the odds.

With Much Love
Jen

Defying The Odds

I admit I am one of those people who gets most of their news from the headlines on Yahoo's opening page. I actually stay pretty informed that way. One of todays headlines is doctors baffled by woman's paralysis recovery. For a mother who has heard doctors use words like will never, most likely won't, we need surgery for that hearing stories that defy the odds are music to my ears. Miracles happen. No Explanation Needed!

Branching Out

I am trying something new. I have a new blog where I will feature some of the goodies I make in the store. On the sidebar is the link to sew jennifer creations. I am going to look into doing paypal but I want it to take off a bit first. I love doing custom orders for people and want to make this more available to my friends in far off places.


Life has been crazy around here as Abigail started a new preschool Wednesday. She lovesssss it! Jackson will have a nurse come on Mondays. Verdict still out on this one. I really liked her so we will see. Chris is back from his most adventurous trip to Denver. Lots of stories and lots of parties with big names. That's about as much detail as I care to talk about. Hot water heater went out that was an expensive venture. Business continues to do well and I am still enjoying it so....... the story continues

The Story

Brandi Carlile


All of these lines across my face
Tell you the story of who I am
So many stories of where I've been
And how I got to where I am
But these stories don't mean anything
When you've got no one to tell them to
It's true... I was made for you

I climbed across the mountain tops
Swam all across the ocean blue
I crossed all the lines and I broke all the rules
But baby I broke them all for you
Oh because even when I was flat broke
You made me feel like a million bucks
You do and I was made for you

You see the smile that's on my mouth
It's hiding the words that don't come out
And all of my friends who think that I'm blessed
They don't know my head is a mess
No, they don't know who I really am
And they don't know what I've been through like you do
And I was made for you.

All of these lines across my face
Tell you the story of who I am
So many stories of where I've been
And how I got to where I am
But these stories don't mean anything
When you've got no one to tell them to
It's true...I was made for you

Ohh yea it's true... that I was made for you




Ohh yea it's true..... that I was made to be your friend, your daughter, your wife, and your mother
Thanks for sharing the journey with me without you I would not be me

These Things Will Change!

Doctors and websites all said my baby wouldn't walk, talk, or do much of anything. That is a tough reality to hear. It is a parents worst case scenario. We have watched our baby who had a 2% chance of being born alive fight. He has fought and conquered more in 16 months than we thought he would in his whole life. We are really struggling with how hypotonic he is. He is like a rag doll on a good day. Physical therapy is much more exhausting for me than him, but what we are lacking for progress in physical strength we are making leaps and bounds mentally. We now have about 12 pictures of things that are important to him like toys and family. He can look at a series of pictures and pick out the correct one we are asking for. He is also made the connection between the picture and the object. His communication skills are excellent. He is trying to say the words with the pictures. It often comes out as the first letter sound of the word but very impressive. We are on such a high from the things he has been doing lately. These things so many people said he wouldn't do. There are so few people chosen to have a miracle in there lives. I know better than to think I will wake up and all the obstacles in his life will vanish but .......... I love a good unexplained miracle! Here's to Jackson and all the things that are subject to change!

PHELPS PHAN!!!!!!

Pause music at the bottom of the blog to listen to you tube video. I have never watched swimming, yet I didn't miss a race Michael Phelps was in. He is amazing and a true inspiration. He says nothing motivates him more than when somesone says it can't be done. We need more role models like him!!!!!

8 Gold Medals Michael Phelps Won More Olympic Gold Medals Than Anybody Ever Narrated by Morgan Freeman Bejing Olympics 2008 VI

I feel like Eva Gabor

I spent three and a half hours being pampered yesterday. Chris got me a spa package for my birthday in December and I just used it. This is the life. I feel so relaxed and like a Queen. I don't know why but when thinking what song could I put to a spa entry Green Acres came to mind. I can't explain, other than I live in West Texas and I felt fancy today. I think I was supposed to be born somewhere like New York with great shopping and fancy living. If anyone ever asks you what you want for your birthday always say a spa package. THIS IS THE LIFE!!!!!!

Make an on-line slide show at www.OneTrueMedia.com

Viva Las Vegas!

I have been meaning to post about our family trip to Las Vegas and out of laziness am just now uploading the pictures.  We spent two weeks with my mom and her husband.  We did all the average touristy things like the strip and lots and lots of shopping.  In fact Chris and I both had to send boxes home which was cheaper than pay for another bag on the plane.  We took a direct flight 2 hours and 10 minutes (the kids were perfect both ways) you wouldn't have even known we had kids with us.  Thank God for small things.  Chris spend the first week attending a government conference which according to him was excellent.  The excellent part for me was getting to spend the week days with my mom away from husbands!  Jackson is usually a momma's boy but with Grandma around I was nothing.  They got a chance to really bond for that I am very grateful.  If you ask Abigail about Las Vegas she immediately tells you Grandma has an alarm on her house.  This was traumatic for her because she made it go off and she is skittish with loud noises. She will also tell you we ate corn dogs in Las Vegas.  Her favorite food is corn dogs so this was a highlight.  After those two things she will eventually tell you she got a build-a-bear.   I spent 80 dollars on this bear with many outfits and it rates behind a stinking corn dog but that's a 4 year old.  

Frustrated!

I got a call today from the medically dependent child program the one Jackson is currently on.  She was asking if I had set up nursing hours for Jackson.  I have not.  I was on the fence about having someone take care of my child regardless of the fact they were going to pay for someone to come in 49 hours a week.  Yes I typed that right what would anyone do for 49 hours away from their child?  I am a stay at home mom so am I supposed to be home and have someone take care of him?  All of these are questions I hadn't decided on the answer to.  So back to the phone call-- this lady starts saying your going to lose medicaid if you don't get this set up and is acting like I already know this information. I hate not knowing everything I need too, then being treated like I am stupid for not knowing. I guess I will be calling tomorrow to get nursing hours set up. I only have to use it once a month to keep medicaid so.....  What the hell am I supposed to do?  I have no clue!  I realize this is a petty thing to be frustrated by and I should be grateful such a program exists and I am I just have a lot of emotions about leaving Jackson with anyone.  I think I would feel guilty.  If only I could get a housekeeper instead. HA HA HA!

A New Look

Hope You Like My Mom's New Background!

A New Perspective

I have been doing some soul searching these past few days.  I want to find  peace in my decisions and contentment in my situation.  I want to come to a new understanding that my life is blessed and not the mess I sometimes make it out to be.  It is so easy to reflect on how you want to live and so hard to actually live that way.  I am asking God to show me a new perspective.  Help me to see the amazing things I am meant for.  I am trying to listen more to the inner workings of what God truly wants for me.  This is not easy for someone who is a control freak.  I am trying to surrender my control and find peace in others wisdom.  Basically I am trying to be happy with what I have and not always want more.  I lead a blessed and very spoiled life yet crave so many things that I'm sure are not going to bring me any more happiness than I already have.  

If only we all could see things through God's eyes for even one moment. 

If only we could see how the pieces of our lives fit together so we could understand the "whole" picture

I am finding myself not sleeping again.  Please pray for me to find the peace necessary to allow me to recharge my batteries.  I am a constant thought full of worry and ideas.  I can't seem to turn off.  I am quietly going crazy inside my own mind. 

Home for One year Today!

I ran across these photos today.  As you can imagine they hit me hard.  I try not to think of those months when things were so devastating.  Seeing the photos again today made me proud of just how far our family has come in a year.  He continues to amaze me.  In a year's time I have gone from not wanting a sick baby to wondering if I could possibly live without him.  I share these photos today only to show just how far he has come.  I haven't let others look at them until now.  Here's to you my beautiful handsome son!  According to I Tunes I listened to this song 76 times in the month after his birth, and who knows how many boxes of Kleenex.  

Dearest Jackson,

You are and will always be the most amazing person in my life.  You inspire me to keep going and never give up!  Keep up the good work.  I love you Bud!

Back to Reality

I am home after two weeks of having my mother cook, clean, drive, get up with abigail at 7:00a.m, change dirty diapers,  and play with my children.  I didn't want to come home.  Chris left this morning for Washington D.C.  I am not only home but am alone.  I didn't want to come home.  Did I mention that?  There is nothing like having your mom take care of you.  Vegas has an abundance of shopping and I think I went to it all!!!!!!!  I love to shop.  I gambled but broke even.  I really wanted to win enough for a Coach purse but no such luck.  I don't know if I could spend that much anyway.  I have been greeted with not being able to find things because of piles of junk, and a list of orders kindly waiting upon my return. I have a full week of catching up on all therapies for Jackson and about 100 phone calls to tie up loose ends.  WAH!   Life is Wonderful!   

Life is Wonderful

It takes a crane to build a crane
It takes two floors to make a story
It takes an egg to make a hen
It takes a hen to make an egg
There is no end to what I'm saying

It takes a thought to make a word
And it takes some words to make an action
It takes some work to make it work
It takes some good to make it hurt
It takes some bad for satisfaction

La la la la la la la life is wonderful
Ah la la la la la la life goes full circle
Ah la la la la la la life is wonderful
Al la la la la

It takes a night to make it dawn
And it takes a day to make you yawn brother
And it takes some old to make you young
It takes some cold to know the sun
It takes the one to have the other

And it takes no time to fall in love
But it takes you years to know what love is
It takes some fears to make you trust
It takes those tears to make it rust
It takes the dust to have it polished

Ha la la la la la la life is wonderful
Ah la la la la la la life goes full circle
Ah la la la la la la life is so full of
Ah la la la la la la life is so rough
Ah la la la la la la life is wonderful
Ah la la la la la la life goes full circle
Ah la la la la la la life is our love
Ah la la la la la

It takes some silence to make sound
It takes a loss before you found it
And it takes a road to go nowhere
It takes a toll to make you care
It takes a hole to make a mountain

Ah la la la la la la life is wonderful
Ah la la la la la la life goes full circle
Ha la la la la la life is wonderful
Ha la la la la la life is meaningful
Ha la la la la la life is wonderful
Ha la la la la la life it is...so... wonderful
It is so meaningful
It is so wonderful
It is meaningful
It is wonderful
It is meaningful
It goes full circle
Wonderful
Meaningful
Full circle
Wonderful

Jason Mraz

Packing for Vegas Baby!

I am packing for the big trip to Vegas.  This will be the first time all four of us will be on a plane together.  We will be gone for two weeks.  I need it.  In case your wondering my mom lives there so it really will be a vacation.  I will be going from 105 degree weather to 110 so not much different right? I am hoping to get great pictures while I am there.  Please pray it is a relaxing time and that I can recharge my batteries and handle life until the next trip.  By the way the next trip will be in August to Denver since Chris is going to the National Democratic Convention.  Haven't really thought through the details of that one yet.  

Jackson has figured out how to unhook himself from his feeding so the feeding continues to pour out on him and his bedding.  This is quite frustrating yet I am proud of his sneakiness. He is becoming more and more vocal everyday.  He loves to tell us Hi and I am getting Momma more frequently also. I feel like speech therapy is going great while physical not so much.  I guess I have to take what I can get. Abigail watches her Dance recital  DVD about three times a day and can now perform everyone else's dances.  She even put up a new toy to get a new dance outfit at Wal-mart yesterday.  She needs different costumes for the different dances in the recital.  This girl is serious about dance.

I did a craft show this weekend.  Never again in June.  It was 100 degree in the shade.  I made about as much in a weekend as I do in a month at the store so that was nice.  I might try it again in October but my luck is that it would be freezing or some other fluke of weather.  

Crazy busy times in the Hightower House!

Hope all is well in your house 

Love you all

Husband

Husband is home with me 24/7 for the entire summer.  Enough Said!  

MARGARITA TIME!

I love a good margarita.  A margarita has never failed to cure what ails me.  My friend just called and she will be over to pick me up for a drink.  There was no need for discussion.  It is understood  when one of us needs to get out of the house and refocus we just call.  I love my friends.  I have a very unique blend of friends and each one seems to serve a different purpose for different moods. In a few weeks the fam. will be going to Las Vegas to visit Grandma for two weeks.  I am really excited to run away for a while.  This is the one thing I will Thank George Bush for (Stimulus Check)  it is paying for us to fly to Vegas baby!  I have been told I have to go to Margaritaville.  You don't have to ask me twice! 

Shaken

I have been reading the blog of a little boy with trisomy 18 Jacob Fahmer.  Most babies with trisomy 18 are not born alive or only live a few hours.  This is what the doctors quietly didn't what to tell us they thought Jackson had.  I have been going to the blog everyday to hear how he is doing and what mischief he has gotten himself into.  It had become a part of my daily routine.  Last night the blog entry was news that he had passed away.  They got to spent 139 days with their miracle.  Reading other peoples' lives has created a sense of family for me.  I have cried for this family as if they were my neighbors or close friends.  For so long we weren't sure if Jackson would live and still have fear for his life.  I'm not sure just how close Jackson came to dying in those beginning days.  Today I mourn the loss of everyone who has lost a child, accident or illness doesn't change the sadness.  Please pray for this family and others like them.  They have had to endure so much. Please pray for peace for their family.  They have two other boys who deeply loved their brother.  I find myself hugging my children a little tighter today.  Enjoying every sound and sweet thing they do.  I want to memorize every detail.  Life is truly too short.  

My reason to Live

Hi

stand

Stand in the Rain   Superchick

She never slows down

She doesn't know why but she knows that when

She's all alone

Feels like its all

Coming down

She won't turn around

The shadows are long and she fears if she cries

The first tear

The tears will not stop

Raining down

So stand in the rain

Stand your ground

Stand up when its all crashing down

You stand in the pain

You won't drown

And one day what's lost can be found

You stand in the rain

She won't make a sound

Alone in this fight with herself

and the fears

Whispering

If she stands

She'll fall down

She wants to be found

The only way out is through everything

She's running from

Wants to give up

And lie down

So stand in the rain

Stand your ground

Stand up when its all crashing down

You stand through the pain

You won't drown 

And one day what's lost can be found

You stand in the rain

Ranting

I am a mess today.  I started bawling in front of the new physical therapist.  I hate for other people to see me cry.  I felt so pathetic.  She started asking me if I had a support group or a counselor I really don't want to admit I might need that.  I thought I didn't want to say anything to Abigail about Jackson's condition unless she asked.  Well she is asking and having a hard time with therapists coming to work with him.  I think it is that she isn't getting attention.  I told her he needs extra help learning things.  I don't know what else to say.  I don't want it to be real.  Saying it out loud saying it to her makes it real.  I want to pretend everything's fine.  I want to pretend it's normal that my 14 month old baby can't sit up.  

I don't want to be a mom today.  I want to lock myself in the bathroom and cry.  I want to throw a fit and scream why the hell me?  Why my baby?  I'm tired of having to work so damn hard just to sit up.  I'm tired of changing out his bedding because I left the feeding machine on and it went off automatically.  I'm tired period.  

Lubbock or Leave it

So we drove two hours on Friday after Chris got home from school so that Chris and Jackson could have a short stay in a new "hotel".  They only had to stay from 7:30pm to 12:00am.  Abigail and I did some shopping while we waited for them to complete their stay and then got a hotel room of our own.  The nurses packed in to see a baby.  Apparently Jackson hammed it up for them and was very intrigued with them.  I guess if you are used to seeing elderly people this was a great change. After picking them up at midnight we were all exhausted.  We spent Saturday driving around our old stomping ground.  I am always surprised at how much I miss Lubbock.  Then again those were the good days of going to class and having no job, no kids and nothing to worry about.  The town has grown so much!  We drove past our old town house it brought back a flood of memories.  We are truly blessed to have had such a good time early on in the relationship.  Thirty days from now Jackson will be on medicaid!!!!! 

I Love The Flower Girl

Here is a preview of the amazing wedding photos.  Abigail definitely stole the show.  She was the best flower girl ever.  OK so I'm biased but she even cleaned up her petals when she was finished.  We had a great time.  It was nice to let loose and have fun.  We danced all night and were very silly.  Many more pictures and stories to come.  I also have dance recital pictures to upload.  Till then ...............

When You Say You Love me

Sometimes we forget to slow down and hear the things that are really important.

I Hear You.  I Feel you kiss my cheek every morning, and without fail you whisper those treasured words.... I LOVE YOU

Dearest Husband,

Know I love you with every beat of my heart.  I am grateful I got to see you through others eyes last night.  Your energy and passion for a better world continually makes me fall in love with you over and over again.  You walk into the room and my heart melts.  I live for our conversations about any and every thing. I watch the clock and wait for your phone call to come home. You listen with all your heart and hear every word.  Your ability to listen to all sides of a story make you rare. Your strength and conviction are truly inspirational.  Believe you are a positive force to be reckoned with.  Believe you make a difference.  Believe you make people better for having known you because I am better for having known, and loved you. Congratulations for making it through another year.  You are an amazing teacher.  

Love

Your Best Friend

Manic Monday

As I sit down with my calendar I realize this week is just too much.  I cancelled on tonight's bunko to finish orders due tom.  Then get a call from the in laws saying we are having dinner with family that came into town.  I adore Chris' aunt and haven't seen her in many months, but yikes what a time crunch.  Also in that is Abigail's last two rehearsals before the recital at 4:00 on Sat which we will promptly leave so she can go to a wedding rehearsal to be a flower girl.  This wedding includes family that will be staying with us so that means a mad dash to clean the guest room/craft room.  Chris has an awards banquet on Tuesday night.  Throw in all therapies for Jack the last special days at school for Abigail meaning shopping for a bathing suit for splash day etc etc.  I am a little overwhelmed this manic monday.  There's to hoping it all gets done or that I realize life will go on even if it doesn't get done.  Listening to the song makes me realize all these things require me to figure out what I'm going to wear. Do I even have that many dresses? UUUUGGGGGGGGGGHHHHHHHHH!

Mother's Day

Happy Mother's Day!

Hold you Miracles close and treasure every moment!

Miracle - Celine Dion

You're my life's one Miracle

Everything I've done that's good

And you break my heart with tenderness,

And I confess it's true

I never knew a love like this till you...

You're the reason I was born

Now I finally know for sure

And I'm overwhelmed with happiness

So blessed to hold you close

the one that I love most

With all the future has so much for you in store

Who could ever love you more?

The nearest thing to heaven,

You're my angel from above

Only God creates such perfect love

When you smile at me, I cry

And to save your life I'll die

With a romance that is pure heart,

You are my dearest part

Whatever it requires,

I live for your desires

Forget my own, needs will come before

Who could ever love you more?

Well there is nothing you could ever do,

To make me stop loving you

And every breath I take,

Is always for your sake

You sleep inside my dreams and know for sure

Who could ever love you more?

I Love To Sleep!

Is there any thing more precious than a sleeping baby?  

Medicaid Here We Come

Yeah!   Prayers answered!  Thank you for all your support.  I had a meeting this morning and we are moving forward with the Medically Dependent Child Program.  This will gives us Medicaid and nursing hours to use when we need.  There are also budgets for things if we need to make modifications to our home to best suit Jackson.  I am on cloud nine right now.  I can't explain the burden lifted from my shoulders.  Yeah!

Thanks Be To God

Thank you God for making me who I am 

Thank you God for giving me Passion for life

Thank you God for giving me Strength and Conviction to stand up for what I believe in

Thank you God for giving me Love in my heart instead of Hate

Thank you God for the perspective, and vision  I have for the future

Thank you God for all the Miracles I have been privileged to witness

Thank you God for giving me Today and all that today means

Thank you God for this and every day I have left on Earth

Some of you know what kind of week I have had and the struggles in my heart.  Thank you for listening and being my voice of reason. I love you all.

My Brain Hurts

As many of you know I have frequent headaches, and as a headache sufferer you spend a great deal of time trying to decide why you have a headache, and how to get rid of said headache.  I have decided my headaches are due to my brains inability to quit thinking.  I am going ninety to nothing in my head at all times.  I am having a hard time sleeping because I am thinking, thinking, thinking.  I am grateful for my creativity and would not like to lose it but it has been on overload lately.  I have ideas swimming around in my head and not the time to actually make them.  Anyone who has great relaxing techniques feel free to let me in on it.  

I Want To Be Somewhere Over The Rainbow

Everywhere I look.  pregnant.  I went to a baby shower today my excuse for rushing out was picking Abigail up from dance, which was true but tears filled my eyes all the way across town.  The joy and excitement of a new baby, her large round belly and the oodles of presents with tons of pink tissue paper.  I really have no idea how to describe the hurt in my heart.  I feel robbed of all the joyous beginning feelings, don't get me wrong Jackson is doing great now but don't think I don't realize he should be walking now.  It's all the dreams and and goals you have for an unborn child I think that is what I am mourning.  Without even knowing it you plan every aspect of their futures.  Our physical therapist is now on bed rest for the next two weeks assuming she lasts that long.  I didn't even want her in my home after she told me she was pregnant (that was 8 months ago and I was crazy then) only I realize I must still be a little crazy.  Crazy for selfishly wanting all those feelings again, when in reality I just want those feelings back for Jackson.  I want the confidence of knowing he will go to college and play sports.  I want to know I am going to rip my hair out wondering where he is after curfew.  A friend just got licensed to foster newborns.  I am insanely jealous yet how do you let someone take them away from you.  How do you detach enough so if they leave you can still function, yet attach yourself enough so that baby knows unconditional love?  This was a tough day.  

Finally A Call Back

I one week later, got in touch with the medicaid lady.  She seemed nice and understanding. I do feel for her since she is the only person in this area for several counties.  She is planning a trip this way the first week in May and will send me the paperwork today.  Based on the few questions I answered on the phone she said it sounds like he will qualify.  So for my sanity and peace of mind pray that is is one less thing we will have to worry about.  I am starting to feel achy I hope it is only from taking care of two kids all week.  

Jumping On the Bed

OK I was awakened by a 4 year old jumping on my bed at 7:20am.  If you know me this was not cool.  I hate getting up in the morning and if at all possible I want to wake up on my own especially not in such a  violent manner. I would be a much happier person if I could sleep till 10:00.  The only comfort that came from that is that a child with mono would not have the energy to jump around the way she is.  Plus she hasn't had a fever since around 2:00 yesterday.  

In other news........ Hilary Clinton won Pennsylvania :(  Chris is much upset.  I wanted Obama to win simply so things would settle down around here but no I guess they are going to fight to the end.  Cute story about Obama--- Abigail had what is called Donuts with Dad last week.  They invite the dads to have donuts and the kids have made presents for them.  One of the presents was a place-mat, and in each corner was a question the kids answered about Dad.  

1.  My Dad is ___ years old.    answer 4

2.  My Dad is as strong as an ______ answer elephant

3. My Dad likes to cook_______   answer meatballs

4.  My Dad watches _____ on T.V.  answer Barack Obama  :)

Secondhand Serenade

Secondhand Serenade is my new favorite right now.  Chris came home one day saying I just heard the best song on the radio but I have no idea who sings it. (That has happened to you before) He sat at the computer for hours (we are both somewhat obsessive personalities) trying to find this song.  After about three days of searching I tunes and the radio's website Fall For You was the song.  I had actually heard it before and liked it myself.  All of his songs sound the same but for now I'm diggin' the sound.  

Mono Maybe

So we were at the doctor again today.  They are quite used to seeing me now.  Only for the first time ever my baby girl is sick.  Sure she has had colds and allergies but not fevers and sore throat. The strep test was negative so she is on Augentin for tonsillitis and if she still has a fever in three days we need to have blood work done to rule out mono.  Apparently it is going around.  Please pray it isn't mono that means six weeks of stuck in the house and sick.  Please no mono.  I can't imagine if Jackson were to get it, and being in the same house how can you not.  I have decided not to freak out yet but I am nervous.  She is still her happy great self and you wouldn't think she was sick.  I'm really not trying to be a whiner but we really don't need that on our plate right now.  

Great Guy

I got flowers today.  My 21 year old cousin was standing at my door with them.  He  just moved here and I am so excited to have him around.  He has always had a special place in my heart and now I see him about once a week.  He has been a great help and great company.  When I had gall bladder surgery he was at the hospital with us and drove me around for a week after the surgery.  He comes over to do his two loads of laundry and is awesome with the kids.  He and Chris like the same movies and joke around a lot.  It's funny that something so small like a bouquet of flowers can make you feel like a million bucks.  Life is Good when you feel like a Princess!

Painting the Floor

When we moved into our house almost three years ago we knew we needed new carpet and still haven't done anything about it.  The only carpet we have in the house is in the bedrooms.  I am glad I didn't get new carpet because Abigail has managed to make more stains than a rug can cover.  My friend Michele called and said you have to come look at what I have done.  She ripped up the carpet in her daughters room, sanded the glue and painted the cement.  Oh my gosh!  it is way cute!!!!  SO......... Poor Tisha (business partner who paints hint hint)  I am going to rip up Abigail's carpet and beg, plead and buy her something pretty so she will come paint her floor.  I will post pictures periodically through what promises to be quite an adventure.  

Fingers Crossed

If one more person tells me Jackson should be on Medicaid or that he should qualify for SSI I might blow up at them.  I agree, I completely wholeheartedly agree.  Anyone who has a medically dependent child should receive services from the government they pay taxes to.  This brings me to the keep your fingers crossed portion of the post.  Apparently there is a waiver program for Medicaid called the Medically Dependent Child Program.  My understanding is that the child must stay in a nursing home for 24 hours to qualify.  I'm sure this is a type of loop hole to help declare them medically dependent.  I have the number to call in my area so pray that all goes well and that they are helpful and speedy.  I have struggled with guilt wondering if I am really needy but you know what there are so many things Jackson is going to need that are out of our grasp.  I just want to know I tried everything before we go ahead with surgeries this summer.

Beautiful Babies

Good News Bad News

O.K. Just got back from the doctor.  He gave me an antibiotic for what is more than likely a sinus infection.  He was way impressed with little man.  We haven't been sick since we came home from the hospital Yeah.  He admitted he thought he would be seeing us often and that he would have pneumonia alot, so go Jackson for staying healthy.  He is thinking once the cleft palate is fixed drainage will get much better.  I have doubts based on other kids stories.  Anyways the bad news is the helmet really didn't reshape his head.  This I know and trips to Dallas were wasted.  The fact that we had to have it off for so long didn't help.  He thinks we will have to have it surgically fixed.  This scares the hell out of me.  Apparently this is important so his skull doesn't fuse before his brain is finished growing.  While I am sick about the idea we don't need complications down the road.  

Enough of that I really don't want to stress over that right now.  I just got an email from this amazing photographer in Dallas and we won a photo-shoot.  I had to write about Jackson's story and we all know how touching that is soooo.  Her site is andreahughesphotography.net   if you want to check it out.  Her son has a rare condition as well and wanted to offer a contest to special needs families.  Thanks Trish I wouldn't have known about it without you.  I am so excited.  This is great great news.  

Snot and more Snot

Jackson has a doctor appointment today.  He has a cough and some drainage go figure.  I think we all live in a constant state of this.  I just hate to see him cough, a runny nose I can handle.  When I read the emails from my Emanuel's support group it seems like the kids are sick all the time with some form of pneumonia, so I am fearful when Jack gets sick.  The speech therapist was thinking sinus infection so we will see.  This past week ran smoothly just busy.  The store is staying busy and orders are pouring in.  I am trying to get more stuff listed on etsy so check back once in a while. I was a hostess for a bridal shower yesterday and am hosting one in my home at the beginning of May.  The last of Chris' bachelor friends are getting married, which means I will be hosting baby showers in the near future then I am finished.  I am showered out.  At some point they just aren't fun anymore.  I guess the highlight is getting away from the kids for a few hours.  It's nice to get dressed up and not have a child wiping their nose on your shoulder.  

Make Me Believe

The Sugarland song Make Me Believe came on the radio last night and a very powerful memory comes with this song so I thought I would share.  

As many of you know  Jackson's fourth month of life was spent in Dallas.  That is 6 hours away from family, friends, our home.  Carrie you so wonderfully keep Abigail during this time.  Thanks again.  For me this was probably the darkest of our times.  While in Dallas the doctors found something new daily.  Not just something little it was this is what's wrong and we are going to operate tomorrow.  It was hard to stay positive.  Chris and I were in Jackson's room at the hospital when his phone rang.  It was Michael (Chris' best friend since third grade)  he and his fiancee (my step sister) were in Dallas for the Kenny Chesney concert.  Not only were they going to the concert they had tickets for us.  This was a total surprise.  The concert was about an hour from the hospital in an outdoor soccer complex.  We had amazing seats floor level.  It was June in Texas so yes it was hot.  Then the sky decided to open up and start raining.  We first tried to stay dry with makeshift trash bag ponchos.  We gave in and enjoyed the rain pouring on us.  I remember thinking how symbolic the rain was and how it was somehow  washing away all things I had stressed over for months.  I sang at the top of my lungs, I laughed something I hadn't done in months, and after a few margaritas felt like I could survive anything. Sugarland came on before Kenney and they were amazing.  Chris is Rock 'n' Roll so he didn't know the songs.  They started to sing Make me believe and we danced in the rain crying over the words holding on to each-other for dear life.  We have tried to tell our friends just how much that night meant to us but there aren't words.  That was the one of the most wonderful moments of my marriage.  When everything was crashing down around us we danced in the rain.  You never know how much a simple act of kindness is going to impact someone.  They saved us that night, and they made us believe.  

Never Satisfied

Never satisfied.  I caught myself whining about having 12 orders to finish by Tuesday.  Now that is a great thing and I want the business to do well but..... (kicking and screaming) now I have to actually do the work.  Chris even told Abigail your mother is locking herself in her sewing room and you can't bother her.  He generously let me work for several hours today without interruption.  I'm starting to be caught in a vicious circle of spending all my time doing orders and not making new things, but without new things what will people order?  I'm now finished whining. 

As a side note a good friend emailed me today and asked for prayers for her daughter Kylie.  She has had seizures most of her life and they can't seem to figure out why.  Her last one was the worst yet.  Please pray they can find the right medication, or cause to stop the seizures.  So many of us know to well what it feels like to worry about your child for medical reasons.  

My day to Shine

Glitter.  I can't figure out where it comes from sometimes.  I realize there are a lot of crafting supplies around the house so I guess that is technically where it comes from.  None the less I am always finding glitter on myself.  As we were getting out of the car Abigail yells "Momma your shining!!!"  Sure enough there was a piece of glitter on my nose.  As I tried to get it off she seems upset.  She then says in a mature kind of way "Don't you want to shine?  I wish I could be shiny." for which I replied "baby girl you shine all the time just by being you."  That sums up my purpose as a parent.  I always want my kids to feel shiny.   

I Want A Sister

I want a sister.  These words are uttered daily from Abigail.  She tries in subtle ways like this morning walking to her classroom she says jackson is my precious brother(yes that is exactly what she said) and he would love to have a little sister.  The drawing she came home with on Tuesday had three people.  One big person in the middle and two small people on either side.  When I asked if this was Mommy Jackson and Abigail her response was no i am the big one is the middle with my Jackson and my baby sister.  Clever.  Many of you know I over indulge my children.  Remember the shopping addiction in earlier post?  I almost feel like I should give her a sister.  I mean after all she wants one.  Sigh.  I know in my head I couldn't handle it if we had another sick baby, but my heart tugs at the idea of just one more.  If anyone out there has an extra baby sister let me know so we can resolve this dilemma. 

Sweet potatoes in my hair

I just finished feeding Jackson sweet potatoes.  He lovessssssssss sweet potatoes.  He unfortunately tends to have food come out his nose.  This would be cute if it was a small amount, but he sneezed and orange goo went everywhere.  He seemed to shake it off and want another bite.  (He finished the whole jar by the way)  As I was sitting here reading comments I brushed my hair out of my face to discover he had blown this orange goo in my hair.  Being a typical busy mom I was not scheduled for a shower for another three days. Ha Ha.  Here's to all the moms who could use an extra unscheduled shower!!!

I live in Chaos

I live in chaos.  If you have been to my house you would quietly agree.  I don't know why I can't seem to keep a clean house.  I think I have finally figured out I am creating the mess and the mess is dominating my life.  At the beginning of the week I made a list.  The days of the week were displayed with the rooms of my house divided and chores.  My goal not only clean up but clean out.  So this is the third day I'm pumped. This is an amazing feeling.  Maintaining will be the harder goal.  My shopping has a lot to do with the mess I'm in now.  I have fought the urge to get a Target fix for two days.  I don't even need anything!!!!  My will power is being tested here.  Here's to hoping I can kick the shopping habit and finally have the clutter free house of my dreams.  

thank God for the internet

Where would we be without the internet?  A question I am glad I don't have to think about.  As I read the blogs of people who are only connected to me because our kids have the same disorder I realize without that link I would not be where I am today.  As humans we need (crave) someone else to understand us.  So without the internet to connect me to people in Florida, Canada and California, and many other places I would feel so alone and lost.   There is a hidden thank you for these certain people who through the internet help me to heal.  I won't always be this mushy so enjoy

three days to a name

I stared at the computer screen where it asked what I wanted to name my blog.  I couldn't just do my name I wanted something catchy.  Well I suck at catchy.  So after a million ideas ran through my head each one more pathetic than the last I began to realize just how random my thoughts were.  SO........... We now have totally random jen   This will either be something I do everyday or something else i do half ass.  You will have to check back periodically.  Till then