great!
I bet you thought I was going somewhere else. OK, I bet everyone thinks it from time to time, but I can't even begin to express the gratitude I feel for my other mother. (NOTE: Mom - I love you too.)
Since Olivia was born, I can't even tell you how grateful I am for all of the help she's given Leslie and I. For us, it's hard to find folks willing to babysit Olivia, or maybe we haven't let go enough to let others take care of Olivia. Either way, it's been great for a bunch of reasons. We get a break, Leslie can have a few minutes of solace, Olivia gets to hang out with her honey, etc.
This is going to be a short post, but I've been thinking about writing it for so long. Just want to thank you Stephanie for all of the help. We couldn't do it without you.
Chad
P.S. Mom - I love you! Can't wait to have you here too.
Wednesday, February 8, 2012
Sunday, January 22, 2012
A Weekend of Learning - Deafblind Children
I'm really proud of Leslie, not just because she's a great, dedicated mom, but because she's willing to do anything for Olivia. She spent the entire weekend at a seminar sponsored by two Texas agencies that advocate for children that are deafblind.
Let me digress here, what is deafblind? I searched for the best description I could find and wouldn't you know that Wikipedia had the one that made the most sense. Here it is.
"Deafblindness is the condition of little or no useful sight and little or no useful hearing.[1][2] Educationally, individuals are considered to be deafblind when the combination of their hearing and vision loss causes such severe communication and other developmental and educational needs that they require significant and unique adaptations in their educational programs.[3] Deafblind people have an experience quite distinct from people who are only deaf or only blind."
It's hard to comprehend what that really means, but can you imagine be deaf AND blind? Leslie experienced a little of that world this weekend when she was blindfolded and then things were shoved in her hand and mouth with little or no warning...AWFUL. She learned a lot and gave me a lot to think about too. It was a long weekend but she came away with a lot of good information and taught me a lot about how Olivia interacts with the world.
Try it -- have someone blindfold you and put in ear plugs...how hard is it to interact with your world?
According to all of the statistics I've seen, there are only about 10,000 - 15,000 deafblind people living in the US. Regardless of the actual number it's not very many. What I took away from the weekend was that it's going to be VERY hard to get Olivia any semblance of a good education in public schools without both Leslie and I fighting for every single thing. It's hard enough for the "average" (whatever that means) child to get a good education, can you imagine what that means for a deafblind child?
One thing I know for sure is that Olivia is a fighter and that her will (and our attitudes) are going to go a long way in helping her shape her future.
Chad
Let me digress here, what is deafblind? I searched for the best description I could find and wouldn't you know that Wikipedia had the one that made the most sense. Here it is.
"Deafblindness is the condition of little or no useful sight and little or no useful hearing.[1][2] Educationally, individuals are considered to be deafblind when the combination of their hearing and vision loss causes such severe communication and other developmental and educational needs that they require significant and unique adaptations in their educational programs.[3] Deafblind people have an experience quite distinct from people who are only deaf or only blind."
It's hard to comprehend what that really means, but can you imagine be deaf AND blind? Leslie experienced a little of that world this weekend when she was blindfolded and then things were shoved in her hand and mouth with little or no warning...AWFUL. She learned a lot and gave me a lot to think about too. It was a long weekend but she came away with a lot of good information and taught me a lot about how Olivia interacts with the world.
Try it -- have someone blindfold you and put in ear plugs...how hard is it to interact with your world?
According to all of the statistics I've seen, there are only about 10,000 - 15,000 deafblind people living in the US. Regardless of the actual number it's not very many. What I took away from the weekend was that it's going to be VERY hard to get Olivia any semblance of a good education in public schools without both Leslie and I fighting for every single thing. It's hard enough for the "average" (whatever that means) child to get a good education, can you imagine what that means for a deafblind child?
One thing I know for sure is that Olivia is a fighter and that her will (and our attitudes) are going to go a long way in helping her shape her future.
Chad
Saturday, January 14, 2012
Giving Thanks - It's All Relative.
Today I took Olivia out on a few errands after watching her for most of the morning, and I was really tired and stressed. It was one of those days that it seemed like nothing was going right. I couldn't touch Olivia without her fussing at me. I couldn't put on her hearing aid without her fussing at me. I couldn't put her in her car seat without her fussing at me - you get the point.
I was pretty beat down and anxious. In all honesty, I was pretty mad at everyone, including God. Then, right when I needed it, God lunched me straight in the face. It was like he was screaming at me, "it's all relative Chad, it could be so much worse." A friend of mine sent me a message about a family struggling with their baby's rare genetic condition that caused him to break out in blisters anytime we was touched or touched himself. From what I read, it looked like he didn't have a whole lot longer to live - at 2 years old.
Punched right in the face, hard. Really, hard. I am a baby. I was being a baby.
After I wiped the tears from my eyes hearing this family's story and thinking about the days after Olivia was born and we didn't know if she'd live, I prayed and thanked God for everything he gave us. Olivia is such a miracle and so strong. It reminded me of Hebrews 12:1 (12:2-3).
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."
I thank God every day for the miracles He gives us to help little one's like Olivia bring so much joy to our family. It's all relative, sometimes I need to remember that.
I was pretty beat down and anxious. In all honesty, I was pretty mad at everyone, including God. Then, right when I needed it, God lunched me straight in the face. It was like he was screaming at me, "it's all relative Chad, it could be so much worse." A friend of mine sent me a message about a family struggling with their baby's rare genetic condition that caused him to break out in blisters anytime we was touched or touched himself. From what I read, it looked like he didn't have a whole lot longer to live - at 2 years old.
Punched right in the face, hard. Really, hard. I am a baby. I was being a baby.
After I wiped the tears from my eyes hearing this family's story and thinking about the days after Olivia was born and we didn't know if she'd live, I prayed and thanked God for everything he gave us. Olivia is such a miracle and so strong. It reminded me of Hebrews 12:1 (12:2-3).
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."
I thank God every day for the miracles He gives us to help little one's like Olivia bring so much joy to our family. It's all relative, sometimes I need to remember that.
Sunday, June 26, 2011
6 Months Later...Another Blog Post
Back by popular demand, Olivia's Blog! Sorry it's been so long, Leslie and I have really let this slip!
To appease you, we're posting two recent videos of Olivia. The first one was taken last week. It shows one of Olivia's more recent (and amusing) developments - LAUGHING! I hope you like it.
The second video was taken yesterday and was one of those accidental milestones. Leslie was giving Olivia the equivalent of a baby Cheetos bite just to lick and taste, but she ended up taking a bite of it! That's the first solid food she's ever had - here it is!
Hope you enjoy!!!!!
Chad
Tuesday, January 18, 2011
Do you believe in God?
That's a literal question, seriously. Do you believe in God? I do. I've been thinking about my relationship with God in earnest ever since Olivia was born. Recently, His presence in my life has been hard to miss.
If you haven't read the books "Case for the Creator" by Lee Stroebel or "Heaven is For Real" by Todd Burpo, I'd highly recommend them. For those looking to find God or strengthen their faith, these are must reads. Okay,... back to Olivia.
When Olivia was born, I was scared, and mad. Before we knew Olivia's diagnosis I was really really scared. I prayed like I never had before. I'd giving myself to God, but this was the first time I was totally helpless. You see, I'm a fixer and if I can't "fix" something that's a problem. It was humbling, and freeing, to know that Olivia's fate was in God's hands. What a growing experience for me. And you know what? God came through for us!
I can hear you thinking it already...so what's this post all about? I get it, you love God, but what's the point? Well, that is the point, I love God! He's has blessed our family over and over. I'm tired of trying to placate other people's interest and hiding my faith. It's not something I'm ashamed of...just look around. Olivia is a miracle, it's that simple. How could she be anything else? I mean, if she has lost just a little bit more and I mean just a little bit more, things would be totally different. She's so awesome and we love her so much.
Look at all of the examples of this out there, it's awesome. How many near death experiences/miracles/etc. have you heard about???? This little girl sitting on my lap right now is the only evidence I need to know God is with me, but seriously, how many stories have you heard like that?
So, here's the end of this post. I'm going to put myself out there and welcome anyone's comments, good or bad. I welcome the input.
With Love,
Chad
If you haven't read the books "Case for the Creator" by Lee Stroebel or "Heaven is For Real" by Todd Burpo, I'd highly recommend them. For those looking to find God or strengthen their faith, these are must reads. Okay,... back to Olivia.
When Olivia was born, I was scared, and mad. Before we knew Olivia's diagnosis I was really really scared. I prayed like I never had before. I'd giving myself to God, but this was the first time I was totally helpless. You see, I'm a fixer and if I can't "fix" something that's a problem. It was humbling, and freeing, to know that Olivia's fate was in God's hands. What a growing experience for me. And you know what? God came through for us!
I can hear you thinking it already...so what's this post all about? I get it, you love God, but what's the point? Well, that is the point, I love God! He's has blessed our family over and over. I'm tired of trying to placate other people's interest and hiding my faith. It's not something I'm ashamed of...just look around. Olivia is a miracle, it's that simple. How could she be anything else? I mean, if she has lost just a little bit more and I mean just a little bit more, things would be totally different. She's so awesome and we love her so much.
Look at all of the examples of this out there, it's awesome. How many near death experiences/miracles/etc. have you heard about???? This little girl sitting on my lap right now is the only evidence I need to know God is with me, but seriously, how many stories have you heard like that?
So, here's the end of this post. I'm going to put myself out there and welcome anyone's comments, good or bad. I welcome the input.
With Love,
Chad
Saturday, December 18, 2010
Christmas Letter 2010
Leslie and I are happy to be writing our fourth (I think!) Christmas Newsletter together. I’ve definitely worked myself into a corner with the newsletter, it’s likely to become an annual responsibility for me! Oh well, I love writing it and reflecting on our year.
As you’d expect, most of our newsletter will focus on our time with Olivia and all of her progress and milestones.
In our last newsletter, you read about Olivia’s battle immediately after birth, which continued for months and months. The great news is that’s she’s doing great! All of the true medical concerns have been resolved, something that we’re extremely thankful for. We thank God daily for our little girl. Here’s a picture from her first birthday party at school!
That being said, our lives (especially Leslie’s) have been EXTREMELY busy. The never ending barrage of appointments, therapies, school visits, etc. keeps us both working hard. I’d be lying if I said that I did a whole lot of it, it’s really all Leslie. Honestly, she spends another 40 hours a week taking care of the non-stop obligations. Olivia and I are truly fortunate to have such a loving and dedicated mommy / wife. On top of Leslie, we’re all very lucky to have Gramma Honey too, who seems to be able to charm Olivia into doing just about everything and anything – Stephanie, thank you so much for all of your help, we’d be grayer and more wrinkly from the stress without you!
My main duties are changing poopy diapers (which I love), taking out enormous, monstrous bags of diapers, washing Olivia’s mountains of dirty clothes, taking Olivia on shopping trips (mostly to the grocery store or Target) and kissing my little girl every second I can! I love being a daddy almost as much as Leslie loves being a mommy.
Olivia’s been doing great. Despite her chromosomal deletion, Olivia continues to show us there is no “can’t”. Like all parents, we struggle to fight the daily temptation to worry about her milestones and focus on being mommy and daddy. Every time we try to limit her, she just ignores us and goes on doing what she was doing.
The coolest/most gratifying moment we had with Olivia this year was the day of her cochlear implant activation. If you haven’t seen it, we put it on YouTube…check it out at the link below.
http://www.youtube.com/watch?v=EjM04gaqFrc
That moment was truly inspirational. We’d been dealing with the fact that Olivia may never really hear for over a year and to see her respond like that was AWESOME!
A month before Olivia’s activation she had her surgery, which wasn’t quite as fun. They had a very difficult time getting her breathing tube in, which caused some serious complications … mainly pneumonia. The day after surgery was agonizing for all of us, Olivia was in so much pain from the surgery and the breathing tube debacle – all we wanted to do was take that pain from her. After a night in the hospital we went home, only to go right back after Olivia spiked a 104+ degree fever. Once we got to the hospital we found out she had pneumonia. We had a month between the surgery and her activation, and we needed every day of it to get better. Now she’s blowing and going with her implant! We love talking with her and singing to her; it’s so much fun!
Among Olivia’s favorite hobbies are chewing on her bib or hand, sucking her thumb, eating her “mac macs” (macaroni and cheese), talking with her mom and dad, and singing songs from Barney Radio on Pandora.
The Rest – It’s true, it’s not that significant compared to Olivia’s Story, but still an important part of our year.
Battle Buddy 57 – As Rx’d By Texas Children’s Hospital
Like last year, we continue to spend a lot of time at Texas Children’s Hospital. It’s sad when we walk through the halls and see multiple nurses, doctors and staff we know well or can give any of the lost families (the place is huge) directions to just about anywhere.
This summer, I organized a fundraiser with my new, good friend Vic at Bayou City Crossfit to raise some cash for Texas Children’s. What a perfect combination, Crossfit, a vomit-inducing way of working out and raising money for a good cause. The event was a HUGE success, we had well over 200 people coming out in 100+ degree July weather to put themselves through a BRUTAL workout – 2 people teams doing 8 exercises, 57 of each (one per day Olivia spent in the NICU). It was SO great to watch, not so fun to part
icipate in. Fortunately, my super-fit best friend Mike came down to be my partner.
It was great to have him there to take part in the event with me. All in all, we raised over $6,000 for Olivia’s endowment at Texas Children’s, not too shabby. Next year we’re shooting for $10,000+… just look at the picture of this cute family, doesn’t it make you want to donate??? Thanks to everyone who donated! Notice Leslie in the shirt made for the event. Hopefully you’ll think about participating next year! Olivia wants to know if you’re up to the challenge.
Halloween
This Christmas newsletter wouldn’t be complete without a mention to the incredible Halloween outfit my mom made for Olivia. Leslie and I have an inside joke (I’ll spare you the details here) about Olivia being an owl, which is an almost constant source of laughter for us, so naturally Olivia was an owl. Mom, you outdid yourself with the outfit.
If you see this menacing owl flying around with her razor-sharp talons unsheathed, I’d recommend you find cover and send her offerings of field mice (part of the inside joke, don’t worry about it…it’s funny to us.)
Naturally, we shamelessly paraded Olivia around in her owl outfit anywhere we could. Needless to say, it was a HUGE hit.
Miss Olivia – World Traveler
Once we took Olivia off of her oxygen, she became quite the traveler. She made a visit to Phoenix to surprise her gramma, papa, great-gramma, and one aunt and one uncle! Imagine my parents’ shock when we showed up at a Home Depot 3,000 miles away from their house to surprise them. Here’s 4 generations of Stevenses, with Leslie as my proxy.
We also took a week-long trip to the Bay Area for Olivia to see a therapist, which was a lot of work but tons of fun too. The therapy is considered “alternate”, but Olivia seems to be responding very well to it – it teaches little ones with developmental delays to organize their thoughts, and thus, their movements better. We saw some immediate results, like Olivia wanted to hold her head up, prop herself up and trying to roll from back to tummy! So awesome.
Leslie and Olivia also joined me for part of a weeklong work trip I had in San Diego. We had a chance to go to the San Diego Zoo and survived a mild earthquake while we were there. San Diego is truly one of the hidden gems in the U.S.
Wrap Up
That’s it for this year, we love you all and hope you have a Merry Christmas!
Saturday, October 23, 2010
Babbling, Baby Bjorns and Bujos
How about all that alliteration, huh?? It's amazing how I amuse myself these days!
Babbling
Olivia is getting very close to moving from "pre-babbling", which is making a bunch of random noises, to "babbling", which as I understand it entails making the same sounds over and over. Among her favorites are the "L" sound, which usually sounds something like "Ooooh-LA" and the Spanish "en-ye" sound, you know the "n" with a funny squiggle above it!?!?!?! It's been so much fun talking with Olivia, she's getting really good at taking turns talking. Leslie or I will talk and then she'll talk, then we'll talk, then she'll talk, etc., etc. Her cochlear implant has been a miracle, there is no doubt about how well it's working. When that thing is on,she's a different person. Olivia is even starting to start talking to us just when we come into her view, something that's so great. She seems to get shy around Aunt Lisa for some reason...we'll work on that Lisa!
I hope she grows up to be like her dad, talking all the time and asking a ton of questions. I hope I'm like my dad and I have the patience to answer all of the questions!
Baby Bjorn
Among Olivia's newest possessions is a Baby Bjorn. For those of you who don't know what that is, it's the sling-like contraptions you see parents wearing with their children dangling in front of them. Honestly, I was extremely skeptical of this thing. In fact, I flat out refused to buy one for 15 months or so...man, what a mistake. I was totally wrong, this thing is awesome. Olivia loves it, we love it and it frees up our hands!
Olivia loves this thing, we've taken her the Greek Festival in it, on walks, to the new Market Square Park in downtown Houston (many times)...all over the place.
Bujos
For those of you that don't know the story, one of our favorite nicknames for Olivia is "bujo", which comes from the Spanish word "buho", which means "owl." We had a couple of nice ladies cleaning our house for a while (since gone, budget cuts) and one day Olivia was wearing a onesie with an owl on it and they taught us the term "buho", which we turned into "bujo"...OK, it's one of those stories where you have to be there for it to be funny, but it is to us. The best part of the whole story is that Gramma Mary made Olivia a owl/bujo outfit for Halloween so be on the lookout for those photos soon.
Babbling
Olivia is getting very close to moving from "pre-babbling", which is making a bunch of random noises, to "babbling", which as I understand it entails making the same sounds over and over. Among her favorites are the "L" sound, which usually sounds something like "Ooooh-LA" and the Spanish "en-ye" sound, you know the "n" with a funny squiggle above it!?!?!?! It's been so much fun talking with Olivia, she's getting really good at taking turns talking. Leslie or I will talk and then she'll talk, then we'll talk, then she'll talk, etc., etc. Her cochlear implant has been a miracle, there is no doubt about how well it's working. When that thing is on,she's a different person. Olivia is even starting to start talking to us just when we come into her view, something that's so great. She seems to get shy around Aunt Lisa for some reason...we'll work on that Lisa!
I hope she grows up to be like her dad, talking all the time and asking a ton of questions. I hope I'm like my dad and I have the patience to answer all of the questions!
Baby Bjorn
Among Olivia's newest possessions is a Baby Bjorn. For those of you who don't know what that is, it's the sling-like contraptions you see parents wearing with their children dangling in front of them. Honestly, I was extremely skeptical of this thing. In fact, I flat out refused to buy one for 15 months or so...man, what a mistake. I was totally wrong, this thing is awesome. Olivia loves it, we love it and it frees up our hands!
Olivia loves this thing, we've taken her the Greek Festival in it, on walks, to the new Market Square Park in downtown Houston (many times)...all over the place.
Bujos
For those of you that don't know the story, one of our favorite nicknames for Olivia is "bujo", which comes from the Spanish word "buho", which means "owl." We had a couple of nice ladies cleaning our house for a while (since gone, budget cuts) and one day Olivia was wearing a onesie with an owl on it and they taught us the term "buho", which we turned into "bujo"...OK, it's one of those stories where you have to be there for it to be funny, but it is to us. The best part of the whole story is that Gramma Mary made Olivia a owl/bujo outfit for Halloween so be on the lookout for those photos soon.
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