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!

the funny thing is...

• while driving a ripped fireman runs by and Bella says, "That man is Hot!"  I said, "what?"  "He is so hot he had to take his shirt off!" Phew.
• I asked Lucy where she was going, she said "To the potty, ya know, fish heaven."
• Bella asked me the other day, "Mom, why is there white in your hair?"  Let me tell you why honey.
• So, I never watch TV, mostly because the shows I watch are not kid appropriate.  So, I save them all for while I clean kitchen, fold laundry, eat mass amounts of snacks after the kids go to bed.  One of my favorite programs is Ghosthunters.  After about 20 minutes in the other night Bella comes in to tell me the TV is too loud, it is keeping her up.  Well, her room is around the corner and you can not hear the TV so I realize she is watching from there.  She asks what the program is about and I say something like, oh these guys are at a frat house and they are just having fun.  She says, "No they aren't.  They are looking for a little girl ghost who fell down the stairs and died.  Her name is Abigail."  Ah Shit.  Well, how do I explain... this is one of these mommy moments... I need to make a positive impact, I got nothing.  Go to bed little girl.

ABBY HAS DISCOVERED HER HANDS!!! That is all for tonight. I have a ton to say soon... For now, I sleep.

Abby just cried when Lucy left the room, you have no idea how great that is? Talked to my mom on the phone, you have no idea how great that was. Lucy and Bella already have pjs on for funzies, that could be really great!

Heartbreaker

Abilene is a little heartbreaker, no pun intended. One of the hardest parts about having a child with a disability is the heartbreak you feel so often because of many things. First there is the adjustment of your dreams for that child. I am doing okay with that. Next there is the worry for the future, I don't think that will ever go away. For Abby, there are constant ailments hanging over her head, we just wait for them to pop up, or not, but the list is just long and annoying and constantLy on my brain. Nothing could compare to what I would feel when she was evaluated and I was told what delays she is starting to show. There are a few things she not only meets, but excells at, like communication. She is a talker. Basically, mentally she is not showing too much of a delay, but physically she is delayed, and it broke my ever loving puddin heart. I know she will be, but I don't want to hear it. It brings back so many of my students' parents conversations and I get it now. I get how everything people say whether well intentioned or not, will rip my heart to pieces. I need to grow a thicker skin I guess. Because this is only the beginning.