Rambling........... I'm blaming it on lack of food!

I wonder if anyone else is having problems with their blog today? I am. For some reason I haven't been able to change fonts or font sizes and I've been having problems with bolding and italics. But anyway......

2 weeks ago Justin came home from school and we went out for dinner for my birthday. We had so much fun! We went to a Mexican restaurant, which reminds me of home (Texas), so that's always a good thing. The food was good and so were the margaritas! : )

Tiffani, Justin & Lila- apparently Lila's trying to escape from Justin's beard !

Tiffani & Justin-they kept making crazy faces but they finally let me get a good one.

Lila- hanging out at the table like a big girl!

And now for a Lila update. After much research Lila is no longer on soy yogurt. Or soy anything for that matter. I'm a big "everything in moderation" person- and even though I had read about the negative long-term effects of soy I didn't think that much about it initially. Yogurt is a staple for Lila and since she's lactose intolerant there aren't many options available. But it just kept bugging me that she was eating soy yogurt every single day. That's not exactly moderation. We tried goat milk yogurt- that was a definite "no go". She wasn't having it. So we tried coconut milk yogurt and she likes it! More research and we decided to stay with it. Realizing that evidence can be found on the internet to support pretty much ANYTHING you'd like to believe, in these situations you just have to go with your gut. Our gut says stick with the coconut milk yogurt.

And speaking of "our gut", I'm referring to my husband, Nick, and me. I am so thankful for him. He gets Lila ready for school every day before he goes to work. That's their time together and they both love it. And while I do most of the "work" with Lila- it is my part of the deal- he's interested in every little detail of her life. Her schedule is a bit crazy but we feel like it's worth it. She's happy and she's thriving, so hopefully we're right. She goes to school 4 mornings a week, has private physical therapy every week and private speech every other week . We try to participate in a playgroup most Thursdays, when she's not in school. We "play letters" - working on the alphabet and letter sounds- every day and are starting Love and Learning tonight. It's pretty hectic most days. Some people think it's too hectic. That we have her too involved. I guess we'll have to agree to disagree on that one. Sometimes it wears on me- like everybody's life wears on them once in a while I guess. It takes 1/2 hour to drive to Lila's school- one way. That's 2 hours of driving for 4 hours of school. When I start thinking about all of the things that I could be accomplishing during those 2 hours there's something I try to keep in mind. Something I keep going back to. When I found out I was pregnant with Lila I had everything set up to go back to school. I had been tutoring in 2 inner city schools and it was my utmost and I do mean utmost desire to work in the field of juvenile probation. A long story that will be saved for another day, but finding out that I was pregnant at 40 when I had 2 grown kids wasn't exactly good news to me. I was mad. And as weird as it may sound, I stayed mad until we found out at 16 weeks gestation that Lila had Down Syndrome. That got my attention. Okay, God, I'm listening. This scripture became real to me that day.

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8

There wasn't anything wrong with my desire to help those precious kids that are in trouble and growing up with such pain, but it wasn't God's plan for my life.

Linda

Children Learn What They Live- Dorothy Nolte

If children live with criticism, they learn to condemn.
If children live with hostility, they learn to fight.
If children live with fear, they learn to be apprehensive.
If children live with pity, they learn to feel sorry for themselves.
If children live with ridicule, they learn to feel shy.
If children live with jealousy, they learn to feel envy.
If children live with shame, they learn to feel guilty.
If children live with encouragement, they learn confidence.
If children live with tolerance, they learn patience.
If children live with praise, they learn appreciation.
If children live with acceptance, they learn to love.
If children live with approval, they learn to like themselves.
If children live with recognition, they learn it is good to have a goal.
If children live with sharing, they learn generosity.
If children live with honesty, they learn truthfulness.
If children live with fairness, they learn justice.
If children live with kindness and consideration, they learn respect.
If children live with security, they learn to have faith in themselves and in those about them.
If children live with friendliness, they learn the world is a nice place in which to live.

Obviously we've all seen this before but I like to read it every once in a while to remind myself that every single thing I do makes a mark on those around me, especially my children.

Spread the love today~

Linda

I am participating!

I put my "Spread the Word to End the Word" post on Facebook. Everyone on my blogroll is already participating. : )

Linda

The Candida Diet

Sorry, no cute pictures of Lila on this one. This post is all about the candida diet- I had e-mails, FB comments and messages asking questions about the diet. Here's what I know, and a little bit of history that led me to start the diet.

SO................. I'm on day 2 of the candida diet. And it pretty much sucks so far. Nobody's forcing me to do it, this I know, but I'm prrrrrrrettttttttyyyyy sure I need to do it. For 13 months I was misdiagnosed with urinary tract infections. All of my symptoms were consistent with urinary tract infections and the quick urine test that they do supported that as well, so I was given antibiotics. 9 separate prescriptions in 13 months. During this time I was being seen by a urologist. I had a bladder scan and a CT scan. The urologist told me to take my time urinating, ensuring that I had emptied my bladder, and gave me instructions to take cranberry and vitamin C. Done. (There were other instructions too but I'm fairly certain that everyone reading this is probably pretty familiar with them.) I did everything she told me to do. It seemed like I couldn't catch a break- I just kept having the same symptoms over and over. But I finally did get a break when I was seen by a Physicians Assistant instead of a urologist. After talking with me she told me that she thought that I had a yeast infection and hadn't been able to get over it because I kept taking antibiotics which were just making the yeast infection worse. One dose of Diflucan and my symptoms totally went away! Yikes! I wish I had seen her at the beginning of the process! She talked to me about the excess yeast in my system, exacerbated by the antibiotics, and that I probably needed to do a cleanse. Yeah, yeah. I'm busy. Then I talked to my sister Donna and she told me the same thing. I really had every intention of doing it but I was looking for the perfect time to do it- when I had basically nothing else going on. Never. going. to. happen. Then I came across a list of symptoms associated with candida.

• Frequent stomach pains and digestion problems
• Skin problems (skin infections, eczema, psoriasis, acne)
• Foggy brain / Trouble concentrating
• Constant tiredness and exhaustion
• Anxiety
• Mood swings
• Obsessive compulsive disorder (OCD)
• Anger outbursts
• Irritability
• Headaches
• Intense cravings for sugars, sweets, and breads
• Itchy skin
• Inability to lose weight

These can obviously be symptoms of many other things but...... I started thinking that some of my symptoms really became obvious when I started having the "urinary tract" infections! And the more antibiotics I put into my body, the worse some of these symptoms got. Constant tiredness, headaches, inability to lose weight, foggy brain, and the cravings..... what's all that about? I'm a food person- a meat and potatoes girl. I'd much rather have an extra helping of potatoes than dessert. But all of a sudden I want chocolate, bread, brownies, and cake. I don't even like cake!

Exhibit A: Here's a picture of Tiffani, Lila and me 2 days after Lila came home from the NICU. That would be 7 weeks and 4 days after her birth.


Exhibit B: Here's a picture of Nick and me taken about 2 weeks ago.

Okay, so it's difficult to see what I'm talking about but you can see that I've gained weight. About 15 pounds worth of weight to be exact. The whole point is that 80% of the clothes in my closet don't fit me. Not just that they're not flattering, I can't button or zip them. Something's gotta give! So I'm doing this candida diet in hopes that I will feel better and that I will not have to give all of my clothes away. Here are links to two of the best websites that I have found explaining the candida diet.

www.yeastinfectionadvisor.com/candidadiet

www.womentowomen.com/digestionandgihealth/candida

I'm warning you- it's not easy. And when the website says you won't be hungry? Don't believe it for a minute.

But...................Enough about this. There are much happier things to tell!

Linda

A song by Bruce Carroll

Sometimes Miracles Hide by Bruce Carroll

They were so excited it was coming to be
Two people so in love, now soon there would be three
For many years they'd planned it
Now it would soon be true
She was picking out the pink clothes
He was looking at the blue

The call came unexpected
The doctor had bad news
Some tests came back and things weren't right
He said, You're going to have to choose
I'll wait a week for your decision
Then the words cut like a knife
I'm sure everyone will understand
If you want to take its life

Though they were badly shaken
They just had no choice
They knew God creates no accidents
And they were sure they had His voice saying

Sometimes miracles hide
God will wrap some blessings in disguise
You may have to wait a lifetime
To see the reasons with your eyes
'Cause sometimes miracles hide

It seemed before they knew it
The appointed day arrived
With eager apprehension
They could hardly hold inside
The first time they laid eyes on her
Confirmed the doctor's fears
But they held on to God's promises
'Cause they were sure they both could hear

Sometimes miracles hide
God will wrap some blessings in disguise
You may have to wait a lifetime
To see the reasons with your eyes
'Cause sometimes miracles hide

Though she was not like the other girls
They thought she was the best
And through all the years of struggle
Neither whispered one regret
On the first day that she started school
And took her first bus ride
They remembered the words that God had spoke
And they both broke down and cried

See, to them it did not matter
Why some things in life take place
They just knew the joy they felt
When they looked into her face

Sometimes miracles hide
They say, "God has wrapped our blessing in disguise
We may have to wait this lifetime
To see the reasons with our eyes
But we know sometimes miracles hide"

Moving forward

On Tuesday when I went to pick Lila up from school I was expecting business as usual. Lila either comes out being pushed in a stroller or pulled in a wagon, depending on how many kids are there that day. Here's a picture of Luke and Lila, wagon buddies.


Much to my surprise when the door I opened, I didn't realize that Lila was coming out right then because she was walking, holding on to one of her teacher's hands. I was so excited! A walker! Today she's a walker! I was so incredibly proud. (And yes- of course- I felt those familiar tears welling up in my eyes.) I'd love to post a picture of the moment but unfortunately my camera was in my purse and I was already on my way to the door to get her. Later that day, at physical therapy, she decided to walk down the hallway with Miss Carla. I say decided because most of the time when you try to get her to walk holding on to one of your hands she just drops to her knees. That's happening less and less and we are THRILLED!

Here she is walking with Miss Carla looking quite pleased with herself!

Apparently it was all a bit much for her.

Proud to be her mama~

Linda

Watch your kids.... or else.......

Who, me? Busted!

Mom- I can explain.

Oh, well- gotta love me!

That's my girl!

Linda

Catching up starting with today

So I feel like I have a lot to catch up- but I'd like to start with today and work backwards. I love Thursdays because Lila doesn't have school on Thursdays and she usually doesn't have any therapies either. Thank God for a free day! So Lila and I got in the car with a very special destination in mind. Unfortunately we had to pull over on the side of the road to wait for this:

And this:

We waited on the side of the road for 30minutes. I wasn't exactly thrilled. Lila, however didn't care. She just sat in the back seat, took her shoes and socks off and ate cheese crackers. But then she got bored with that so she decided to lift up the leg of her pants and hide the crackers there.

Then she'd look for the cracker.

And act all happy when she found it as if she hadn't been the one to hide it!

And we finally reached our destination. Our friends Annette and Haik added another BEAUTIFUL little girl to their family yesterday. We went to see them at the hospital and Lila was so excited to see all of them; especially Roxy and the new baby, Lena Elizabeth.

Lila looking at Baby Lena.

Lila looking at Miss Annette.

Roxy and Lila being silly. Check out Roxy in her "big sister" t-shirt!

It ended up being a great day despite the time-consuming detour. Congratulations Annette and Haik! Lena is beautiful. Hugs to all of you.

Linda

Out with the old, in with the new. Wish it were that simple.

Lila's old speech therapist, Kelly, started her own business and doesn't take insurance so we are trying a new speech therapist at the therapy center. (Isn't it sad how finances made that decision?)We absolutely love, love, love Kelly. Unfortunately we can't afford to pay out of pocket or even out-of-network so the decision was made for us. Find a new therapist. Yesterday was Lila's first visit with Miss Judy. I was surprised at how quickly Lila warmed up to her. Judy is PROMPT trained, which is a huge reason that we requested her. Usually Lila doesn't like anyone touching her face- especially her mouth- but for some reason she didn't fight Judy at all. Last night when we got home Lila was "prompting" herself- touching her lips and making sounds. Even though her sounds didn't correspond with her prompts, it was hilarious. And of course we're prejudiced but we thought it was pretty impressive as she'd only been to one PROMPT session!

Another day, another small victory. We'll take it.

Linda

Spread the word

Last night was the monthly meeting for the Junior Women's Club of Loudoun that I recently joined. I love the fact that the women that attend these meetings are so passionate about volunteering and making a difference in the world. Food donations are taken at each meeting to support one of our local food banks. Next month, in addition to taking food donations they are taking unwrapped gifts for teenage boys. We will be supporting an organization called "Birthday Blessings. This organization gives birthday presents to underprivileged children in our county. In addition to supporting Birthday Blessings we will be involved in sponsoring 10 kids so they can play in a soccer league that they normally wouldn't be involved in because they can't afford it. I won't list all of the things that are going on but I'm looking forward to the next few months.

So I'm sitting in the meeting, minding my own business, thinking about what volunteer opportunities I'm going to sign up for, when my friend Pam slides a note across the table to me. And asks me if I would be willing to talk about the campaign. You know the one.

And I agreed. We approached the president of the club during a break-permission granted- and after the break we got up to speak. (Pam has been involved in this organization for a few years so they know her well. They also know all about Eliza and that she has Down Syndrome.) Pam started off by reminding everyone that 3/21/09 is World Down Syndrome Day. Last year she put together a video montage of Eliza and showed it to the group. She reminded everyone of that and fought back tears as she talked about it. Which meant, of course, that I started crying too. So after she said a few more things she introduced me and told everyone (which I'm sure they'd already figured out) that I also have a child with Down Syndrome. Of course at the mention of my precious Lila I get all choked up again. SURE- I said- after you've made me cry- now it's my turn. But I had written everything down so I turned my attention to my paper in order to stop my tears. I talked about 3-31-09 and the campaign to end the R word. I told about John McGinley having a son with Down Syndrome and the fact that he is a huge advocate for people with DS. I mentioned that he's been key in promoting awareness of and respect for individuals with intellectual disabilities. And I told them that the words "intellectual disabilities" are replacing the words "mental retardation". And that it's not respectful to say "retarded" even if it's not meant to hurt anyone. That it is hurtful. To our kids. So spread the word.

Sidebar # 1- People saying "retarded" in a casual or flippant way didn't really bother me until recently. A year ago I probably wouldn't have joined the campaign to end the "R" word. As long as they weren't actually describing someone that had some kind of delay I was okay with it. After all, most people don't really mean any harm when they say that word. But the more I think about it the more it bothers me. It is very disrespectful. To my daughter. To my friends' sons and daughters. To people I haven't met yet. To people I will never meet. To people that have already passed. To a loving group of people that don't deserve to be treated with disrespect. And as Lila's delays become more and more evident to us and to the world around us, the word "retarded" tends to sting. So do me a favor- don't say it. Even if you don't mean any harm. Because it's hurtful.

Sidebar # 2- Speaking in public about Lila is a huge deal to me. When it comes to Lila I am one big tender on-the-verge-of-tears mama. She has hit the deepest part of me. Straight to the heart. When it comes to Lila I am raw. Vulnerable. Naked. I love all three of my kids with everything in me. I love them all the same. And I love them all differently. And everyone that has kids knows what I mean. And everyone that has a kid with Down Syndrome knows what I mean. It's different. (When I was pregnant with Lila, after the prenatal diagnosis of DS, I met my friend Pam, whose son Riley has Down Syndrome. Pam told me that she loved all of her boys but there was just something special about Riley. And that I probably didn't understand right then but I would in time. And she was right.) So back to the subject because apparently the sidebar got sidetracked. Last night when I agreed to talk about the campaign to end the "R" word I knew it wouldn't be easy. I really tried not to tear up. It was inevitable. I just don't want people to misunderstand why I cry. When I talk about Lila I'm not crying because I'm sad. I'm not crying because I wish that she didn't have Down Syndrome. I'm crying because I've always cried easily but since Lila was born I cry.............. more. And I'm more sensitive. And more patient. And more loving. And more vulnerable. And more protective. And more appreciative. And closer to God. And the list goes on. But how can I communicate all of those things effectively? How can I explain that a diagnosis that brings sorrow and fear turns into a beautiful angel who brings so much love I feel like my heart can't contain it sometimes? That I probably wouldn't be this sensitive or patient or vulnerable if not for Lila? I'm not sure but I'll keep trying to figure it out. And in the meantime I'll continue to talk about and advocate for Lila. And, inevitably, continue to cry.

Linda