Here with me

This is what Owen looked like the first time we saw him after his open heart surgery.  He was just a little bit less then two months old.  Lived his little life in the NICU and only been in his mommas arms four times.  This image has been burned in my mind ever since. This is the moment when "keeping him here" became incredibly real for me.  If he can survive this, nothing else matters as long as he is here, here with me.  If he learns to walk and talk, that's awesome.  If he gets to go to school to learn to read and do math, great.  None of that matters if he's not here.   So while my mom promised him a trip to Disney world. I promised him I'd keep him here, here with me.  

25%

They say the loss of a child is the worst loss someone can go thru.  Just the thought of losing a child can be paralyzing or make you do crazy things.  2 mos after Owen was born Nick and I were forced to go beyond it being "just the thought" by doctors during long board room type meeting where they threw all kinds of what-ifs, percentages, side affects, future surgeries and so on at us.  After they were done talking this female dr turns to nick and I to say "Let us know if you need more time to make your decision because there is also the loving choice of just letting him pass".   They had just told us his next step was open heart surgery with a 25% survival rate.  If he survived he would need multiple more surgeries including a kidney transplant by age 5.  At this point we were also told that Owen was completely blind.  We could tell he sensed light but that was it.  The answer was a no brainier.  25% is better than 0%.  Do everything humanly possible to keep him Here.....Here with us.  You all know the rest.  But I have never been able to forget the feeling of a dr saying to me "the loving choice of just letting him pass" 

Getting to hold Owen one last time before heart surgery 

The struggle is real

Im going to give this another go.  It's been almost 2 years since I've posted.  There have been lots of good things to write about, I really mean lots....birthdays, teeth lost, kc trips, beach trips, school awards, weddings, holidays, baseball games, new nephews and a 4th child!! I just couldn't bring myself to post about all these goods things knowing that I wasn't ready to post about how I was really feeling about struggling with Owens happiness.  I named this blog years ago "living for Owen" and here I found myself not sure what that meant or how to do it.  We had brought another perfectly healthy child into this world that I am to love, protect and make happy.  All while I'm struggling with my imperfectly healthy child already in this world that I love, protect but do not feel I make him happy.  Something changed in Owen after we moved to South Carolina.   

Turning 5 blues

Uh oh!!! I have a 4 almost 5 years that I think is panicking about getting older.  Noah will be 5 on Feb. 4th.  Week before last he told me he wanted to stay little forever.  He thought it would be a great idea if he stopped eating so he wouldn't grow anymore, I begged to differ.  Then last week he said he didn't want to turn 5 and start losing his teeth like Owen and Livi did.  Again he had a good idea.  He thought he should stop brushing his teeth so they won't fall out.  Again I begged to differ.  Both of these came at random times and not when I was having him brush his teeth or eat a meal.  They are true concerns for him.  Well tonite Nick and I spent a good 30 minute consoling this seriously crying almost 5 year old.  He was so upset over the thought of Nick and I plus himself getting old and being in a graveyard. He kept asking who was going to take care of him when we were gone.  He doesn't want us to get old.  We didn't want to lie to him and say we are never getting old, so I said you don't have to worry about this for a very long time.  He seemed ok with the answer and went to watch tv.  Then I hear him sobbing again.  I ask him what's wrong now, he says after a really long time and you get old and go to a graveyard who's going to take care of us.  It was so heart breaking :-(. I'm really hoping this passes soon and has nothing to do with the fact that he is going to be a big brother to a baby BOY!!!!!

High and low

This jersey was given to Owen by one of Hair Spray Cafes great clients.  It's was too small for her grandson and has been too big for Owen until now.  The weekend before last we went to QTs annual family picnic and I thought it would be a great time for Owen to wear it.  Owen has never really cared too much about the clothes I pick out for him.  I usually pick clothes that will make him smile like a super Mario shirt or anytthing in green his favorite color.  Of course I'm always looking for my favorite when shopping for the boys.....skulls!  Before moving here his aunt nat-nat was reasonable for at least half of his woredrobe.  Once when Owen was at about 3-4 he told me he didn't want to wear a new shirt I got him that was black with purple pin stripes because it was a girls shirt. So I made a mental note not to buy him purple anymore.  I still pick out his clothes everyday for him in the morning.  When he saw the jersey he got really excited and kept saying "I get to wear a real jersey?".  It was so cute.  The picnic was on a Saturday and that Sunday Owen asked me if the jersey was clean so he could wear it school on Monday.  I can't think of a time that he has ever asked if he could wear something.  I love that he is showing that he cares how he looks.  I'm making sure that jersey is always clean.  

Tonite Noah took a face dive into the window sill somehow trying to look out of it.  Busted his lips, his gums and loosened a tooth.  He wanted me to take a pic of it so he could see it.  Livi had her friend from across the street over for dinner.  We did our usual around the table with our high and low of the day.  Then liv and her friends were asking each other silly questions....claire asked: would you rather have there be no money and everything was always free or be the richest person in the world? Then liv asked: would you rather be beautiful and poor or ugly and rich?  I won't go into their answers because they were stupid questions to begin with.  Its what Noah said that makes me love my family to pieces.  Noah says without even being asked just listening to the two girls talk "when I grow up I want to be a doctor so I can help Owen's body". This sweetness came from the boy with a swollen lips and gums.  Owens response was "my body doesn't need help!"  They are both perfect to me!

 The picture I took of them this morning before I woke them up for school.

Scarlett!!!!

Another post as promised :-) explaining why I wasn't completely home alone.  Back in November, right at Thanksgiving, we lost our chihuahua of 14 years Beau.  He was our first baby and was spoiled rotten by Nick and I.  We had other dogs that came into our family along the way but Beau was the only one that stuck around after we started having "real babies".  Nick and I were devastated by his lose.  I can still see his little head poking around the corner to check out what we are up to. He was such a good dog and we've found replacing him to be very difficult.  Right after our Disney trip in December Nick and I decided to get a chihuahua mix puppy to surprise the kids.  We quickly learned that a puppy was not the right choice for us.  The kids didn't like a puppy jumping on them nor did they seem to understand or care for the importance of training.  It made for a lot of work for Nick and I.  It had been quite a few years since we had a puppy and we began to feel like....what where we thinking getting a puppy.  After a lot of time and effort put into trying to make it work, we made the heavy hearted choice to find a new home for him.  And we did, he went to a single mom of an 8 year old boy that needed a play mate.  We were still feeling like we needed a family dog but didn't want to make another quick choice.  On our trip back to kc in July we all fell in love with nat and dom's big dog.  We began to think maybe a full grown big dog might be a good fit for us.  Nick started stalking recuse sites, Craig's list and the humane society looking for the right dog.  And we found her!!!

Scarlett!!! She is a six year old great pryenesse/lab mix.  We got her from the humane society.  She is perfect!! 

She sleeps with her tongue out!! The kids love her and she loves the kids back.

You'd think she's always been ours.  Nick leaves for work around 3:45-4:30am and she comes in every morning to tell me he has left.  Took a bit for me to figure out what she was doing but Now I find it very sweet and protective of her none the less.  

A lot to write home about!!

There are a lot of changes going on around here.  Like I always say with hair color....Fall is a great time for change.  Just so this all makes sense, I'm gonna back track a little bit.  In January I turned our basement into a daycare. 

I have a parent's day out/play group program.  They come over every Tuesday and Thursday from 10am-2pm. There were 7 kids age 3-5 in my group including Noah.  We have themed weeks with book reading, arts and crafts, exercise, etc.  I started this group so Noah could play with kids his own age while learning.  His dr had told me she thought he was a little bit behind and when he kept calling brown "chocolate" I thought it was time to do something.   It's been a lot of fun.  I've loved getting to see Noah and the kids learn things that I taught them.  Even Livi has benefited from it. I pay her to help me clean up and re-organize the toys each week.  That's a win win for both of us.  So with that going on January to June just flew by.  

Out here in SC they have 4K (4-Kindergarten).  Normal kindergarten like in KC is called 5K.  4K is not required and spots are limited.  By what I've gathered, getting in is based upon the child's needs and income.  When I first applied for Noah to go to 4K he was denied enrollment.  I was happy with that and glad to get to spend another year at home with him.  At the same time his dr had sent a request for him to have an evaluation done for speech therapy.  I've known since he started talking that he would need speech therapy but was told back in KC that he would get it once he started kindergarten.   **I have to say I love the way he talks!  Nick and I can't always understand what he is trying to say but Owen can.  Owen is our Noah interpreter! I'm very guilty of talking back to Noah the way he talks, which I know is no help to him.  It's just so tute (cute by Noah) I tan't (can't by Noah) help it :-)**. Right before school was out in the spring and Noah's evaluation with complete, we got a phone call saying Noah did have a spot in 4K.  I know that I willingly applied and could turn down the enrollment offer but couldn't bring myself to do that knowing that its what is best for him to get the help he needs with his speech.  I've seen, just with the small group of kids in my play group, how they can't understand him and/or try to correct him "winkle winkle little tar" just doesn't sound right.  I've been in denial that this is really happening all summer.  Last Wednesday I got a real rude awakening when all three of my kids went school on the first day.  I'm still in shock!!!

I've cried, Noah has cried and even Owen has cried.  He had been saying he was scared to go to 2nd grade.  When we went for meet the teacher night he was so nervous to go in the classroom he was shaking.  When his teacher came over to meet him he had the saddest, most scared look on his face with tears in his eyes.  I started crying :-(  He quickly had a smile on his face when his teacher said "look your friend Mackenzie is going to be sitting here next to you".  She is a girl with special needs also that was in his class last year.  They share the same special class aide.  A few minutes later he was in hallway helping Mackenzie in the class because she was too scared to come in.  Made me cry again.  I've gotten good vibes from his new teacher so far, it's only been three days.  I still question if he is in the right place and expressed my concerns at the end of the school year last year at his I.E.P. meeting and was told adjustments would be made this year.  I guess only time will tell.  I'm sure I will be questioning this his entire life.  CCVI and Children's Mercy set the bar high, Kc is so lucky to have them!!  Livi couldn't wait for school to start.  She is in 4th grade and in chorus this year.  I can't believe how grown and mature she is.  This girl is obsessed with chapstick (eos to be exact) and bath and body works products.......does that remind you all of anyone?!?! ;-)

Last Thursday something happened for the first time since moving here in Feb. 2012, I was in this house alone.  Well not completely alone (more on that in the next post. Yes, I know shocking!..there will be more posts to follow) but in this house without nick or the kids.  It was short lived.  At 10am my play group started.  I've decided for now to continue doing the play group even thou Noah isn't here.  I only have three kids left in the group for now.  The others started kindergarten too.  

Noah had 1/2 days last week so he got to play with his friends again.  It didn't take much to decide what I would do with the rest of my free time, I'm not one to sit at home.  I knew I wanted to work more at a salon.  I just wasn't crazy about the salon I was at.  I've had my eye on this salon that puts off the same vibe as Hair Spray Cafe for quite awhile.  I saw this opening in my time as an opportunity to make it work.  I'm so happy to announce that I'm now a stylist at Shear Faith Style Studio in Greer, Sc!!!!

Nick opened a new store last week and will be managing that store until the next store opening. So it's changes in work for both of us.  We are all settling into our new lives out here.  And yes, even after a year and half, it still feels new.