Some fun photos from Avila Beach last night
What is CdLS? How do you get it?
CdLS is a random genetic disorder. Neither Steve or I passed it down to David, but for some reason one his chromosomes mutated and this caused the syndrome. Our chances of having another child with this syndrome are less than %1. Anyone has a %3 of having a child with special needs.
Do you get upset with people who stare or make rude comments?
By and large we have VERY positive interactions with strangers regarding David. I have only had one person who was truly rude. She was a clerk at Target and she stared at David with a disgusted look on her face and asked me what happened to him. In hindsight, I thought I should have told her that he was waterskiing and the rope got caught around his fingers and pulled three of them off. Then get a little misty-eyed and tell her we never found them in the water. But really, most people are incredibly gracious and loving. Sometimes people stare too long and I get a little annoyed. It natural to look, David is small for his size and has a deformity, of course people will take a second look. The best thing to do, to show respect, is to look at the person with the disability, smile, then look at the caregiver and smile. I hate it when people stare at David but won't make eye contact with me--maybe they are afraid, but it comes across as disrespectful.
Does Matty know his brother is different?
So far he hasn't seemed to notice. He gets annoyed with David just like siblings do. He is protective of David (which is unusual for a younger brother) but mostly he just sees David as David. This will change I'm sure as Matty continues to mature. We want to encourage Matty to accept David for who he is and not to be ashamed of having a brother with special needs. At the same time, we realize Matty needs to have space and time where he can be himself.
Did David have a Nissen Fundoplication during his G-tube procedure?
No, we almost did a Nissen about 2 years ago, on the reccomendation of David's GI Doc. When we met with the surgeon, she felt it wasn't necessary since his reflux was under control. He takes Prevacid to control the reflux and is on a lactose free diet (except for the two bites of ice cream we shared with him last night!!)
If you had Matthias before David, would you want to have another child so that your last pregnancy would be a positive experience?
It's hard to say since I experienced my children in this order, but I can say that after David was born I wanted to have another child ASAP. I felt like I missed out on the joy that surrounds the birth of a baby. With Matty we had the "typical" experience. We'd like to have another and hopefully things will go smoothly. I think every family has to decide for themselves what works for them. Having another child after a child with special needs in no way replaces the first child but it can be a healing experience.
Will David grow more fingers? (Usually asked by children 7 years and under)
We don't think so, but hey, God can do anything, right?
I wanted to create a necklace that would describe the impact david has had on our lives, and the word that came to mind was 'blessed'. We cried real tears when david was born, I felt like I would never experience joy again. But I was SO wrong! This child has brought so much love and happiness to our family. He touches those around him. He is a blessing that came in an unexpected way. So, through July, I am selling these necklaces to benefit the cdls foundation in honor of david's fifth birthday. (can he really be turning FIVE?!) They are only $38 each and $10 from the sale of each necklace will go to the foundation. They are strung on 18" sterling ball chain and have a sweet sterling heart. I am also giving away TWO of these sweet necklaces. So leave a comment and tell us about an unexpected blessing in your life. On Saturday I will randomly choose a winner! Go ahead, stock up! These make great gifts for new moms, good friends or anyone who has experienced blessing AND its for a good cause!
The evenings were beautiful with the hot sun setting behind the palm trees.
matty splashed and splashed (he could have played in the water all day!) david really enjoyed the water, too!
all of us at babe's BBQ in palm desert.
me and david get a little post swim snuggle
matty's new froggy flip-flops because the ground was too hot to walk on barefoot!
We are leaving the beautiful central coast
These sweet freshwater pearl earrings are a perfect match for the sterling stamped jewelry. Just your basic, classic pearls, that go with everything! Strung on sterling fishhook earwires $16
A nifty silver polish cloth to keep your necklace shiny. They last a long time, even when the cloth gets dingy! $5
My friend Becky and her husband designed these AMAZING business cards. Each one is seriously a work of art. It's hard to believe, but I am giving away a FREE card with each order placed! Check them out for invites, announcements and more at sugarpluminvitations.blogspot.com
david has the cutest, sweetest little toes in the world. when he wears these sandals, it really shows them off :) i want to eat him up!
matty 'helped' steve with the yardwork this morning in his jammies and red boots. i think he really pulls of this tough fashion statement!
This is a pottery shard from China. I never know what I'll get when I order these and I thought this piece was so sweet! It is strung with freshwater pearls and clear glass. 16" SOLD
I just found this carved bone bird pendant and I fell in love! it looks so organic! The pendant is about 2 inches long. It is strung with freshwater pearls and bone. 16.5" $45, including earrings
Another pottery shard--this cobalt blue is so striking! Strung with cobalt freshwater pearls. 17" SOLD
Mini Open Circle Necklace. Two small open circles (3/4") are handstamped with words of your choice and strung on an 18" sterling ball chain with freshwater pearl detail. These circles are pure silver (not sterling). $48, additional open circles, $14
