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?
GOd Bless you and your beautiful family.
Thanks so much for opening up and sharing your family with us. My oldest has high functioning autism and even though he looks typically developed his actions aren’t. I’ve had many experiences with staring and rude comments and lots of parenting advice. I keep reminding myself that we all have our trials. Some are just more obvious than others. I LOVE your positive attitude!
Thanks for your honesty in sharing. Do you think your work with the disabled before David, helped you process what was going on better? Think it was a sign of God’s mercy? How special for Matty to love and see David for just what he is, a brother and friend. Tender hearts are grown, and what a wonderful heart Matty will have as a result.
I love Avila Beach and that area…went camping in Morro Bay last summer..and looove the shopping in SLO. Your jewlery is amazing. I will have to order a neckalce:)
Thanks for sharing. It’s a amazing how much you can get to know you, as the Leonards more, but also get to know David more…on a blog. You should try the water ski thing one of these days. If you thought they were staring at you before, wait until they are trying to digest that story!
Good answers.
The question about having another baby is very close to my heart. Sonny is my 4th child and most likely last. Immediately after his birth I wanted so badly to have another child at some point so my last experience was more celebratory. Not that I want a healthy child to compensate for Sonny’s special needs. I have 3 other children though and we can’t realistically afford any more and also I feel I want to dedicate myself to Sonny. I don’t like the idea of a new baby needing my full attention and taking away from him.
I feel very sad when I go back to the days, weeks and months after his birth. It was so emotional and so many tears, I wish it could have been more joyful.
I thankgod his birth was wonderful and that we had 1 day where we were blissfully ignorant.
David is very lucky to have a little brother though.
Great answers to great questions…you are so honest and I can totally hear your voice as I read the responses!
Your blog is great. I love reading posts about your life with David. Okay, I also love the pictures and jewelery, but I am only human, right? 🙂 Thanks for sharing with us.
I love learning more about you guys and those photos are priceless! (Also I meant to tell you last Saturday, your shorter hair is super cute!)
Just seeing sweet David makes me smile. Imagine the beautiful, loving, compassionate heart Matty will have growing up as David’s brother. It will be a true blessing and I am sure Matty will have an amazing depth of character and sensitivity as a result, even if some things about it are tough.
2 more totally random questions (are you even taking more questions?!): do you ever wonder how people with disabilities will be in Heaven? Like you said in an earlier post, to take away David’s disability, he wouldn’t be the same precious David we know today. Also, do children and adults with disabilities get baptized? (Well aside from those in churches that always baptize infants…my formerly-Lutheran husband was baptized as an infant, shhh don’t tell!:) )
Thanks for being real and letting us know you!!!!
Beautiful photos of your family! I know what you mean about people who stare too long. I’ll have to remember your waterskiing story. 🙂
Funny you mentioned growing more fingers: that’s exactly what Isaac asked us when Ben was first born. I’ve often thought about having another child, but I think we have our hands full with three!
Thanks for taking the time to answer all these questions.
amen to that. thanks for sharing…your honesty is much appreciated…love reading your blog. j