Ridiculously absent....

Well, it has been too long!

But here we go.

I was thinking the other day about how to ease Steve into our days. He will be home with us during the busy times and he is a law enforcer. So when he is home he tries to create rigid laws and that is not how I work. For anyone who knows me, you know I don't do well when under management. So, in an effort to explain the way we do things, I always try to use metaphor.  Here is mine.

Our life is like the ocean. There is an ebb and flow to all we do. We are in constant movement. You could spend your days at the shore feeling the waves lap your feet, but I prefer to jump right in. Sometimes the water is calm. We float in silence listening to the light caress of the waves. Very peaceful. But most of the time the clouds are grey and grumbly, the water's movement is choppy and harsh. This is where I am at home. The swirls and waves crash all around as I keep calm and steady. As each child's waves crash on my skin I am the presence of peace that guides them. There are no black and white laws, everything is determined by what the whole family needs.

Very zen if you will but we have a lot on our plates and need it to be that way. Bella struggles with anxiety and lately has needed a lot of intervention. I found a natural way to help her, well, 2 ways, I am reducing her intake of processed sugars and have found a place in Norco that does Horse therapy. Now we just have to find the funds for it as it is not covered my insurance, although if I wanted to put her on chemical, insurance would surely pay for that!

Lucy is doing well with school and is such an easy kid that she sometimes gets lost in the shuffle. I feel so much guilt over that, but continue to work on that by giving her as much quality time as I can.

Abilene is a dream. She is such a hard worker. A typical kid her age would be walking, crawling and running off calories, but she is not. Which is fine, except her wonderful appetite and palette are causing her to gain weight. She is 24 lbs, which is not outrageous, but we now are having to watch what and how much she consumes. If she was walking this would be an issue since she would be burning the extra off. We were able to switch insurance which means I don't have to travel all over Southern California anymore! I found a place in Norco that has OT, PT AND Hippotherapy. The owner is a Doctor of Pediatric Therapy and a Proffessor at USC and I immediately trusted her. She has a daughter around Abby's age who has similar issues so she is the perfect person to help us out. Abilene has 2 PTs, 2OTs, and 1 early interevtionist a week.  Speech once a month.  In 3 months we will add Hippotherapy, horse therapy for core strengthening, probably twice a week.

A little much when you add 3 dance classes, 1 art class and taking and dropping off 2 big kiddos at 2 different schools.  Don't get me wrong, I love my life. I am just having a hard time fitting me in.

Some pics

Thought I should add a few pictures.  Yes, that would be nice.

 Mermaid Princess Lucy Loo

 Mermaid Princess Belly Rose

Abby showing off her new stroller!

Okay, a long overdue check in.

So how are you?  I am good.  I am heading to my 20 year reunion this weekend.  I can not believe I am this old.  Any who, let's get to the good stuff!

• Bella is starting Kindergarden in 2 weeks.  I can't believe it.  She is so ready.  And I am so ready for her to be out of the house!
• Lucy has hit the full force cajun 3s!  It takes everything I have not to lose it daily.  Love that little cajun girl!
• Abby is doing so well.  I got 3 weeks with her one on one due to our 'vacation' to my parents house.  And it seemed to push her further along.  She is very close to sitting up, she does baby push ups on her tummy, she rolls where she wants to get, she is holding toys with both hands, and just started putting them in her mouth.  I believe she has said Ma twice.  So great.  She also busted 20 pounds!  I can't wait to see her pediatrician.  He is always so surprised by her weight.  She just broke through her first tooth, I forgot how big they look.  Bella's baby teeth look so small in her mouth and I know when her big girl teeth grow in they will look huge!

I am so excited because I became a member of the National Down Syndrome Congress.  Right now they are having their annual convention.  Steve and I are talking about trying to make it every other year.  I found out that online you can attend their lectures and I signed up.  It is such a particular chromosome disorder and there is so much new information out there, I learned a ton from just one lecture.  The information most people have comes from the 50s or 80s and is greatly outdated.  For instance, it is thought that people with Down Syndrome can't work, drive or live on their own.  But with parents who don't set limitations and provide experiences for their kids, they are able to do most anything.  So that is great.

We will be creating a team for the Buddy Walk in November of this year.  I am hoping it is around her birthday because we can celebrate after.  We are gonna try to get as many people as we can!

I am ready and willing to answer questions about Abby.  I am so lucky to have my background in education as well as having the wonderful experiences with my students.  I feel right now like I can change the world, and I just might.

I just want to send out a special thanks to my friends.  I have chosen my friends carefully in my life.  Very carefully.  And it is for a reason.  I have received so much support from you in the last year.  I am so thankful to many of you.  

A special thanks to:

Amy R. and Brixie M. Thank you for the unconditional love and support during the trying times of my pregnancy.  And thank you for being there for me on that 2nd day when I felt the weight of the world on my shoulders.  It meant so much to me that you visited Abby in the NICU.  Thank you.

Tricia A.  Thank you for being an awesome mom of 4.  We have so many life experiences in common and you have been a pillar of strength for me.  You allow yourself to be human and share it with me.  Thank you.

Staci L. I don't think you can ever know how much it means to me to still have you as a friend after 33 years!  Our lives have paralleled so much and it is so great to have someone to talk to who understands.

Mom and Dad Thank you so much for teaching Jay and I unconditional love and that it is 'normal' to be exactly as God made us.  Thank you for loving my children all the same and for continuing to take care of me.

Jay and Alec Thank you so much for being the guardian angels for Abby.  When she was born you fell in love with her and I know she holds a special place in your hearts.  You love all my children and I thank you for that.

Pat and Teri Thank you for being a really great Aunt and Uncle to my kids.  You were so thoughtful and caring when Abby was born and loved her from the get go.

Bella and Lucy, Thank you for being the best big sisters a little sister can have.  She adores you both and you are great role models for Abby.

Steve, Thank you for being my partner in this family.  We are in this together and I know you love our girls more than you ever knew you could.  Thank you for being one of the most open minded people I know.  When I come up with crazy schemes, you just nod your head and trust me.  I love you.

And to all my friends who daily support me on Facebook, you have no idea how much it means.  

I apologize....

For being such a bad blogger. I have been eating bon bons and tanning lately so it has not crossed my mind... Well that is a fib. I think about blogging all the time. My mind races with things to share, yet getting to the computer for more than 19 seconds is beyond my capabilities at this time. So for that, I do apologize. So tonight I blog. But now, I put a baby to bed.

Questions?

I have been asked some questions lately that I have answered falsely.  I am really the kind of person who will do anything for everyone.  If you need something and I have it, it is yours.  Along with this goes the trait that I will not bother anyone else with my problems or needs.  This is a major flaw when you have a child with disabilities because no one parent can do it alone.  So, here is my passive way of sharing my answers to some questions.

1. Why are you so tired? (my husband)  my answer to him, "I have 3 children, plus you, 4 children to take care of!"  hehe, smile and walk away to do dishes.  The real answer,  "Since I lost Wyatt I was given the gift of reality.  The knowledge that your children can die.  Now, you may say, well you can't live your life in fear!  If you knew my well, you would know I don't, in fact I am quite the 'jump and the net will be there' type of person.  But, there is a little voice in my head that scares the shit out of me.  I get up 2 or 3 times a night to check on my babes.  When Abilene was born, there were 6 weeks of no sleep because she was at risk for heart failure.  I am tired because I worry and as much as I try, it is hard not to."
2. How are you? "Fine." How am I really?  "I am exhausted and sad.  Abby is showing delays, and I knew she would, but a small piece of me really was hoping she would be the one child with D.S. who would not.  Silly I know, but my reality.  I work really hard and am finally thankful for the education I have from my 'almost' masters in special education.  In fact, my skills far out weigh Abby's teachers.  Most days I am very optimistic about everything involving my kids, but I have to have days where I just feel sad.  
3. Did you know she would have D.S.?  Yes.  The answer is Yes.  We chose her.  She chose us.  We are happy with her.  I hope she is happy with us.  At this point, when you start to talk about Jesus and how thankful you are I didn't Abort her in front of my children and expect me to agree with all you are saying?  Shut up.  It is rude and improper to discuss Abortion.  With anyone.  Especially in front of my 5 and 3 year old.  You would be surprised to know this happens all the time.  You might be surprised to know I am Pro choice.  But I find it rude to talk Abortion with strangers, or friends really.  They are intimate decisions not meant to share with a lady in Trader Joes.

I've been drinking wine by myself

For 5 nights!  Why you ask?  OT baby!  If Steve works OT so do freakin I!

So, things are going well.  Surprisingly, I have held down the fort.  We started swim lessons and boy is it awesome for Abby.  It is great for the other 2 as well.  Lucy is in the big girl class, and Bella is in the big big girl class.  I am so excited for the Olympics to start because I want the girls to see women in athletic roles.  We have been talking a lot about healthy eating choices and I feel like the Olympics will give them some positive body image role models to aspire to.  For Abby, swim lessons are supporting the exercising we are working on for her gross motor skills, so another hour a week of one on one work will hopefully help.  For instance, we are working hard on lifting our head on our tummy and reaching and that is what we do the entire time!  So great!  Plus, the YMCA, where we go for lessons, is such an inclusive entity.  It is great to not have to fight any battles to get her to participate.

Real food hoo ha

So, apparently Abby's metabolism will run much slower than Bella and Lucy's.  When Abby was born I spent a pretty penny on books of all sorts about Down Syndrome.  It is how I educate and research.  I was raised in the time before the inter webs and when I had a question my mom told me to look it up in a book.  How old fashioned!  So one of the books was a text book on nutrition for people with Down Syndrome.  Flippin boring.  But I was up at all times of the night with her trying to nurse her so I had plenty of time to read.  Plus, the pumping sessions afterwards weren't as tedious when I had something to occupy my mind.  Long story short, too late, I learned that Abby will have to be very careful about food choices.  Even if she perfectly proportioned her food and ate everything she should, she would not get the proper nutrition.  We will have to carefully dose out vitamins and be very careful about treats.

Well, I want her to be healthy, so I have decided now is the time to change the family food plan.  We don't eat very badly, I make most of our food and we don't eat much fast food.  We have pizza about once a month, In and Out once a month, but Miguel Jr.s once a week.  I don't use a lot of packaged foods and I make most foods from scratch.  But I had a rude awakening when I found the 100 days of Real Food blog.  Wow.  We eat like Shit!  I had no idea of the hidden yuckies in our food.  So, after the research was done I made a few goals and rules.

• We will buy organic as much as we can.
• I will make everything I can from scratch.
• I will buy boxed or packaged food with 5 or fewer ingredients.
• I will institute Friday as a fast food meal kinda night with a dessert.
• I will not require others to prepare food for us this strict.
• If we go out to dinner we can get what we want.

So as I tried my hardest to pump and figure out Abilene's allergies to my breast milk, I came to the realization that I can not keep up my supply when I don't eat enough calories.  Well, when you eliminate as many things as I did, your milk disappears.  So, much to my dislike, I had to change Abby to formula.  Since I had made the above rules for our family, I chose an organic formula for her as well.  Luckily Earth's Best makes a Soy formula.  Problem is the people who use it get to the stores on delivery day and buy it all up!  Rude!  Luckily it is on Amazon subscribe so score!

So, if you try to get ahold of me, I am currently trying out tons of Real food recipes.  If you have any good ones, please let me know!