Sadie loves school. Yesterday she got to be in the Christmas pageant. They "sang" (and by sing I mean the teachers sang) the 15 days of winter. It was sort of like the 12 days of Christmas, but on the first day of winter my teacher gave to me, one tall green fir tree, etc. Sadie was #8, she was 8 knitted hats. (I forgot to push record in time to get all 15, so it starts at 13...oops!)
Then, after they did their whole show, Santa came!!!
We had a good time, I got to visit with some of the other parents in Sadie's class, and even found out that one of Sadie's classmates lives just a couple of blocks away!! ...and she has a swing. We're gonna go over there for a playdate during Christmas break.
Merry Christmas!
Showing posts with label Foundation for Blind Children. Show all posts
Showing posts with label Foundation for Blind Children. Show all posts
Friday, December 21, 2012
Saturday, May 12, 2012
Sadie's a model!!
All of the models ranged from about 1 and a half to 15. They were all visually impaired in some way. Some were full-on blind and used a cane, some could see a bit and had no trouble. Some, like Sadie, couldn't walk, and were wheeled or carried. They were all beautiful and it was really neat to see them act so confident and get so much attention. I think girls need to feel pretty. They need to know that people think they are beautiful even though they may not be able to see themselves, or walk, or talk. People say beauty is on the inside, but I truly believe that to FEEL beautiful, you have to start with the outside.
I wish I had video of more girls than just Sadie, but at the time, it didn't seem necessary to video people I didn't know. But check out Sadie down the runway. She was so happy!!
Friday, January 7, 2011
Walking by Faith
On Fridays, Sadie and I go to the Foundation for Blind Children where they have an infant program. It's 2 hours, from 9-11. For the first hour they set up stations for the kids to experience different things with their hands, there's usually a station with a story, something sensory, etc. then they do music therapy all together in a circle. The second hour the parents get to break off and have a meeting by themselves. This is really why I go.
Sometimes in the parent meeting there are guest speakers, sometimes we learn something related to a vision impairment, sometimes we just talk. Today, we talked. As we went around the table and told about our children and their diagnosis, we were supposed to share something we like about parent meetings and something we'd like to see more of (or less of). It was mentioned many times that we'd like to have some more time to just talk to each other. The thing about Friday mornings is that every minute is used for something. So, if want to just talk to Lara about how we found a respite person, I'd have to stand outside at the end, while both of us hold our children (mine usually screaming) and have the conversation there. It's not ideal.
Once this was brought up (by me, of course), lots of ideas were thrown out: having a shorter music time and a longer meeting, going until 11:15, starting a parent resource group on Facebook, or having a potluck day on a Saturday or something where we can come and just hang out and let our kids play. This last idea is what I want to talk about.
I love coming to The Foundation for Blind Children because there is so much diversity among children. Some only have a visual impairment and are otherwise developing normally, others are like Sadie and have multiple things going on, which usually stem from some kind of birth trauma. Going there was the first time I had really had the opportunity to be around other children with CP, to see how they acted, what their development was like, and to talk to their parents. I came looking for hope, and it's what I find every week when I go. Because Sadie is one of the youngest children who attend, I have the advantage of hearing other parents say, "if we had started when he/she was Sadie's age..." I can see Maddie at 20 months using her hands more and rolling, I can see Ceagan, at 7 months sitting unassisted, and I can see Camilla at 21 months participating in music therapy. And these give me hope for Sadie. But I also see Abbe's mom smiling and playing with her during centers. And I hear Aaliyah's mom talk aout all the new therapy equipment they just got that they're excited to try. I see the joy and love Camilla's mom showers onto everybody because Camilla is her SECOND kid who's been through the program. And these moms give me hope for myself.
Once it was brought up that we could all get together outside of Friday mornings and let our kids play while we talk, one mom spoke up with something I never expected to hear. She said she'd love to do something like this, but sometimes she feels bad that her child's only impairment is visual. She made it clear that nobody has ever made her feel this way, just sometimes she looks at her otherwise perfectly healthy, normal child and is sad for those of us dealing with multiple diagnoses. And after a number of other moms spoke about this and gave their perspectives, I put in my two cents worth.
I told them that I've had my share of jealousy, especially when I go to the grocery store, but that I have never felt jealous of anybody at Friday program. I told them that I love hearing about the things their children are doing or the great things the doctor told them, and it doesn't feel like they're rubbing anything in, because someday I hope it's me talking about those same great things. When I hear it, it gives me hope because I think that if your child can do it, so can mine! I told them that despite your childs impairment, we're all in the same "club" and we've all got our issues to deal with whether it's just a visual impairment or it's multiple life threatening diagnoses. There was a new mom and baby this morning and I spent much of music watching them (because Sadie and I were in the rocking chair napping instead of singing) and I was amazed at how much fun she was having and how well she was doing, and cute she is! And after learning her story that she is a surviving twin, born at 24 weeks with severe brain hemorrhaging, I was even more impressed. But she had a feeding tube, so I know it isn't all rainbows and unicorns in their lives either, so I'm not jealous...not even one bit.
Here's what it comes down to: None of us know what the future holds for our children whether they are perfectly normal and healthy or struggle with severe disabilities. It's just that those of us who have children with special needs might wear our worry more on the outside where everyone else can see it. As parents, we have to walk each day by faith, knowing that God has our children in His hands. And we have to know that no matter what our child may or may not be, it's still our responsibility to be the best parents we can. God gave us to our children because He knew we'd be the perfect parents for them. I also think that whatever the future holds, it's important to remember the good in our own child and instead of focusing on the car screaming and the constant bouncing. So I think about that Sadie can suck on a pacifier, she can sleep all night, and she has a beautiful smile that can light up a room. And that's really why I love the Friday program, because I see ALL of us parents doing exactly that.
Sometimes in the parent meeting there are guest speakers, sometimes we learn something related to a vision impairment, sometimes we just talk. Today, we talked. As we went around the table and told about our children and their diagnosis, we were supposed to share something we like about parent meetings and something we'd like to see more of (or less of). It was mentioned many times that we'd like to have some more time to just talk to each other. The thing about Friday mornings is that every minute is used for something. So, if want to just talk to Lara about how we found a respite person, I'd have to stand outside at the end, while both of us hold our children (mine usually screaming) and have the conversation there. It's not ideal.
Once this was brought up (by me, of course), lots of ideas were thrown out: having a shorter music time and a longer meeting, going until 11:15, starting a parent resource group on Facebook, or having a potluck day on a Saturday or something where we can come and just hang out and let our kids play. This last idea is what I want to talk about.
I love coming to The Foundation for Blind Children because there is so much diversity among children. Some only have a visual impairment and are otherwise developing normally, others are like Sadie and have multiple things going on, which usually stem from some kind of birth trauma. Going there was the first time I had really had the opportunity to be around other children with CP, to see how they acted, what their development was like, and to talk to their parents. I came looking for hope, and it's what I find every week when I go. Because Sadie is one of the youngest children who attend, I have the advantage of hearing other parents say, "if we had started when he/she was Sadie's age..." I can see Maddie at 20 months using her hands more and rolling, I can see Ceagan, at 7 months sitting unassisted, and I can see Camilla at 21 months participating in music therapy. And these give me hope for Sadie. But I also see Abbe's mom smiling and playing with her during centers. And I hear Aaliyah's mom talk aout all the new therapy equipment they just got that they're excited to try. I see the joy and love Camilla's mom showers onto everybody because Camilla is her SECOND kid who's been through the program. And these moms give me hope for myself.
Once it was brought up that we could all get together outside of Friday mornings and let our kids play while we talk, one mom spoke up with something I never expected to hear. She said she'd love to do something like this, but sometimes she feels bad that her child's only impairment is visual. She made it clear that nobody has ever made her feel this way, just sometimes she looks at her otherwise perfectly healthy, normal child and is sad for those of us dealing with multiple diagnoses. And after a number of other moms spoke about this and gave their perspectives, I put in my two cents worth.
I told them that I've had my share of jealousy, especially when I go to the grocery store, but that I have never felt jealous of anybody at Friday program. I told them that I love hearing about the things their children are doing or the great things the doctor told them, and it doesn't feel like they're rubbing anything in, because someday I hope it's me talking about those same great things. When I hear it, it gives me hope because I think that if your child can do it, so can mine! I told them that despite your childs impairment, we're all in the same "club" and we've all got our issues to deal with whether it's just a visual impairment or it's multiple life threatening diagnoses. There was a new mom and baby this morning and I spent much of music watching them (because Sadie and I were in the rocking chair napping instead of singing) and I was amazed at how much fun she was having and how well she was doing, and cute she is! And after learning her story that she is a surviving twin, born at 24 weeks with severe brain hemorrhaging, I was even more impressed. But she had a feeding tube, so I know it isn't all rainbows and unicorns in their lives either, so I'm not jealous...not even one bit.
Here's what it comes down to: None of us know what the future holds for our children whether they are perfectly normal and healthy or struggle with severe disabilities. It's just that those of us who have children with special needs might wear our worry more on the outside where everyone else can see it. As parents, we have to walk each day by faith, knowing that God has our children in His hands. And we have to know that no matter what our child may or may not be, it's still our responsibility to be the best parents we can. God gave us to our children because He knew we'd be the perfect parents for them. I also think that whatever the future holds, it's important to remember the good in our own child and instead of focusing on the car screaming and the constant bouncing. So I think about that Sadie can suck on a pacifier, she can sleep all night, and she has a beautiful smile that can light up a room. And that's really why I love the Friday program, because I see ALL of us parents doing exactly that.
Monday, November 29, 2010
vision update
Today we saw the "famed" Dr. Cassidy.
Ever since we've been attending the Foundation for Blind Children's (FBC)infant program all we've heard about was how great Dr. Cassidy is and how he's done all these amazing things for all these children and for the foundation itself. So, naturally, I thought, "I HAVE to get my baby in to see this man!" And it was an easy decision to make seeing as how I wasn't real impressed with the eye dr. we'd been seeing anyway. Plus when I mentioned it to Dr. Wendy (our pediatrician) she almost peed her pants with excitement just at hearing his name...that was enough for me!
When I called to make the appointment, they were scheduling almost 6 weeks out! So, we've been looking forward to this appointment for a while now. I don't know what I was expecting, he was nice and all...I think all the hype got me over-excited to meet this man. I was under some impression that he looked like Santa Clause and that when he met my baby he'd scoop her up and kiss on her all the while talking about how beautiful she is and how all we have to do is _______ and her vision will be perfect. That didn't happen. He didn't even resemble Santa Clause a little bit. He wasn't even old.
What he did do was give us some hope.
Dr. Cassidy told us that Sadie does have some nearsightedness as well as astigmatism in both eyes (she gets that from her daddy and her grandpa, I think). He said she will need glasses down the road, but not yet. He wasn't concerned about her vision delaying her development severely at this point, but as she gets older it will be important for her to have those glasses. He also said that right now her prescription will probably change a lot between now and next time we see him, so there's no need to waste money on glasses right now. Once we see her prescription changes slowing down, then we'll talk. And that may be in the next 6-9 months. It's highly likely she'll have glasses by the time she's 2.
He also said she has some nerve damage in her left eye, but not really any to be too concerned about. When we brought up the possibility of there being a dominant eye, he said it could be the right eye just because it's probably stronger due to it not being damaged. But, while he doesn't recommend patching for therapy, he did recommend patching to see if we could determine a dominant eye. So, we got a sample patch and we'll start our next Sadie science experiment.
Another thing we talked about was that yes, she does have CVI (cortical visual impairment) and that her vision will continue to improve until she's 15, but the first 4-5 years are the most critical, and it's then that we'll see the most improvement. He said the best thing we can do is stimulate her with faces and big, exaggerated movement with our mouths and our voices. He said we need to protect her a little because with her visual impairment, noises will startle her more since she's not really ready for them.
And for those of you who have commented on her big eyes, you are correct. Her eyes are bigger than normal...but not by much. He said normal is 19.5mm and hers are 20-20.5mm. We kind of talked about that being because of her small head. But we never talked about the implications of this.
So, there you have it. Hope. And I'm a little excited for Sadie to wear glasses, mostly because she'll be able to see, but also because she'll be so cute!!
Ever since we've been attending the Foundation for Blind Children's (FBC)infant program all we've heard about was how great Dr. Cassidy is and how he's done all these amazing things for all these children and for the foundation itself. So, naturally, I thought, "I HAVE to get my baby in to see this man!" And it was an easy decision to make seeing as how I wasn't real impressed with the eye dr. we'd been seeing anyway. Plus when I mentioned it to Dr. Wendy (our pediatrician) she almost peed her pants with excitement just at hearing his name...that was enough for me!
When I called to make the appointment, they were scheduling almost 6 weeks out! So, we've been looking forward to this appointment for a while now. I don't know what I was expecting, he was nice and all...I think all the hype got me over-excited to meet this man. I was under some impression that he looked like Santa Clause and that when he met my baby he'd scoop her up and kiss on her all the while talking about how beautiful she is and how all we have to do is _______ and her vision will be perfect. That didn't happen. He didn't even resemble Santa Clause a little bit. He wasn't even old.
What he did do was give us some hope.
Dr. Cassidy told us that Sadie does have some nearsightedness as well as astigmatism in both eyes (she gets that from her daddy and her grandpa, I think). He said she will need glasses down the road, but not yet. He wasn't concerned about her vision delaying her development severely at this point, but as she gets older it will be important for her to have those glasses. He also said that right now her prescription will probably change a lot between now and next time we see him, so there's no need to waste money on glasses right now. Once we see her prescription changes slowing down, then we'll talk. And that may be in the next 6-9 months. It's highly likely she'll have glasses by the time she's 2.
He also said she has some nerve damage in her left eye, but not really any to be too concerned about. When we brought up the possibility of there being a dominant eye, he said it could be the right eye just because it's probably stronger due to it not being damaged. But, while he doesn't recommend patching for therapy, he did recommend patching to see if we could determine a dominant eye. So, we got a sample patch and we'll start our next Sadie science experiment.
Another thing we talked about was that yes, she does have CVI (cortical visual impairment) and that her vision will continue to improve until she's 15, but the first 4-5 years are the most critical, and it's then that we'll see the most improvement. He said the best thing we can do is stimulate her with faces and big, exaggerated movement with our mouths and our voices. He said we need to protect her a little because with her visual impairment, noises will startle her more since she's not really ready for them.
And for those of you who have commented on her big eyes, you are correct. Her eyes are bigger than normal...but not by much. He said normal is 19.5mm and hers are 20-20.5mm. We kind of talked about that being because of her small head. But we never talked about the implications of this.
So, there you have it. Hope. And I'm a little excited for Sadie to wear glasses, mostly because she'll be able to see, but also because she'll be so cute!!
Sunday, November 7, 2010
Foundation for the Blind Children Fundraiser
There is a thought that the main difference between Tolstoy and Dostoevsky is class. Tolstoy wrote about the upper strata of Russian society while Dostoevsky concerns were with the plebs. We, team Dostoevsky, suddenly found ourselves thrust into a bizarre world filled with glittery dressed women with breasts protruding from all angles, and men completely wrapped in suites made from material I only image left them sweaty and unable to raise their arms above their heads.
We started our night driving to a very wonderful steakhouse situated on the southwest corner of Scottsdale Fashion Square. If you're unfamiliar with the reputation of Scottsdale, just know that having the term "Scottsdale" in one's mailing address raises one's house value 100k just based on status. Being near the fabled Fashion Square only made this location that much more posh. We do not live near Scottsdale.
We avoided the Valet and walked in. We needed access to our car in case of Sadie melt down and waiting for Jeeves to return with our 10 year old 175,000 mile car is not an option. We entered the main area complete with giant ice carvings, ladies in black dresses wishing us to "enjoy yourselves!" and a troika of dazzle. We entered a courtyard that was jam packed with Tolstoy's with a smattering of Dostoevsky's parading blind children around.
The event was geared towards the wealthy. These people put up a certain amount of money to show up and eat. They were then allowed to bid on various items that have been put up for charity. There was a day at Bondurant Driving School, various weekends at Pine Top, and trip to Italy where you can be toured around with a zany tall Italian with poffy hair, a regal accent and sense of Charity. Or these guests could simply donate to the cause.
Our purpose there, along with the rest of the Dostoevsky's, was to show who the foundation helps and allow them to actually interact with beneficiaries. In a way I felt as though my family was paraded around where these Tolstoy's could dote and fawn and pump money into a cause to make them feel good about themselves. Then again, I'm grateful that they are generous enough to donate money to the foundation which gives us so much great assistance and support.
We entered the throng of tightly packed people following a small trail hoping to find someone we knew. We were immediately cornered by what we assumed was the owner of Barrett-Jackson and his group of lovely ladies. The women were so nice. They asked about Sadie and why she was a part of FBC. They marveled at her blue eyes and red hair. Commented on her calm disposition, and eventually asked to hold her.
This lady was currently (well not just at that moment but you get the idea) attempting to become pregnant herself and loved Sadie. The red sparkly dress was something Sadie found mesmerising.
Sadie was then passed to Muffy. (real name: Audra. Her grandma called her Muffin and apparently throughout her life it was reduced to Muffy. She went out of her way to clarify that she had never been on the pole. Well, okay then. I did not respond: having to clarify one's name makes me think that one's name may not be fitting. We spent an exorbitant amount of time discussing them name throughout the night. I digress.) Muffy enjoyed Sadie time too.
This continued for a while as we wound throughout the crowd. We met some people with special needs children of their own, and others who I assume where there solely as this happened to be the fun socialite event of the weekend. At one point, Christie asked if there was anyone famous there. I suppose, depending on interest, one could say the Barrett-Jackson gentleman, however that paled in comparison to the below gentleman.
Dan Haren is a very good pitcher. He is nearly a 5 WAR player the last few years - which for the uninitiated, is very, very, very good number (Three verys should help convey the importance of the 5). I saw him immediately and made eye contact, smiled and he walked on quickly, I imagine in his mind thinking, "Don't ask me for an autograph." A moment later he passed us again, we asked for a quick picture, thanked him, and away he went. I hope to make large contributions.
Shortly thereafter Sadie melted down into a hungry, sweaty, hot, overstimulated, mess. We left the Tolstoy's and drove home to a nice scream concert from Sadie. We hope that in some small way we helped to inspire some people to donate a little bit more to the foundation. Even though the entire situation was awkward (the wine people were drinking was of the 4 dollar bottle variety) it was for a cause we care about.
You can donate to a great cause here: http://www.firstgiving.com/sadiebeck
We started our night driving to a very wonderful steakhouse situated on the southwest corner of Scottsdale Fashion Square. If you're unfamiliar with the reputation of Scottsdale, just know that having the term "Scottsdale" in one's mailing address raises one's house value 100k just based on status. Being near the fabled Fashion Square only made this location that much more posh. We do not live near Scottsdale.
We avoided the Valet and walked in. We needed access to our car in case of Sadie melt down and waiting for Jeeves to return with our 10 year old 175,000 mile car is not an option. We entered the main area complete with giant ice carvings, ladies in black dresses wishing us to "enjoy yourselves!" and a troika of dazzle. We entered a courtyard that was jam packed with Tolstoy's with a smattering of Dostoevsky's parading blind children around.
The event was geared towards the wealthy. These people put up a certain amount of money to show up and eat. They were then allowed to bid on various items that have been put up for charity. There was a day at Bondurant Driving School, various weekends at Pine Top, and trip to Italy where you can be toured around with a zany tall Italian with poffy hair, a regal accent and sense of Charity. Or these guests could simply donate to the cause.
Our purpose there, along with the rest of the Dostoevsky's, was to show who the foundation helps and allow them to actually interact with beneficiaries. In a way I felt as though my family was paraded around where these Tolstoy's could dote and fawn and pump money into a cause to make them feel good about themselves. Then again, I'm grateful that they are generous enough to donate money to the foundation which gives us so much great assistance and support.
We entered the throng of tightly packed people following a small trail hoping to find someone we knew. We were immediately cornered by what we assumed was the owner of Barrett-Jackson and his group of lovely ladies. The women were so nice. They asked about Sadie and why she was a part of FBC. They marveled at her blue eyes and red hair. Commented on her calm disposition, and eventually asked to hold her.
This lady was currently (well not just at that moment but you get the idea) attempting to become pregnant herself and loved Sadie. The red sparkly dress was something Sadie found mesmerising.
Sadie was then passed to Muffy. (real name: Audra. Her grandma called her Muffin and apparently throughout her life it was reduced to Muffy. She went out of her way to clarify that she had never been on the pole. Well, okay then. I did not respond: having to clarify one's name makes me think that one's name may not be fitting. We spent an exorbitant amount of time discussing them name throughout the night. I digress.) Muffy enjoyed Sadie time too.
This continued for a while as we wound throughout the crowd. We met some people with special needs children of their own, and others who I assume where there solely as this happened to be the fun socialite event of the weekend. At one point, Christie asked if there was anyone famous there. I suppose, depending on interest, one could say the Barrett-Jackson gentleman, however that paled in comparison to the below gentleman.
Dan Haren is a very good pitcher. He is nearly a 5 WAR player the last few years - which for the uninitiated, is very, very, very good number (Three verys should help convey the importance of the 5). I saw him immediately and made eye contact, smiled and he walked on quickly, I imagine in his mind thinking, "Don't ask me for an autograph." A moment later he passed us again, we asked for a quick picture, thanked him, and away he went. I hope to make large contributions.
Shortly thereafter Sadie melted down into a hungry, sweaty, hot, overstimulated, mess. We left the Tolstoy's and drove home to a nice scream concert from Sadie. We hope that in some small way we helped to inspire some people to donate a little bit more to the foundation. Even though the entire situation was awkward (the wine people were drinking was of the 4 dollar bottle variety) it was for a cause we care about.
You can donate to a great cause here: http://www.firstgiving.com/sadiebeck
Friday, September 17, 2010
The sweetest thing I've ever witnessed
For any of you who know my husband personally, you know he's a likable guy. If you've ever let him play with your children, you know that they were probably asking when they could play with him again. Children LOVE Brian. But today I saw the sweetest thing I've ever seen.
Brian took the day off and joined me at the Foundation for Blind Children Infant Program this morning. He met a lady I've only sort of met, but who I know of through Sadie's OT. Her daughter has microcephaly, and we learned this morning she had been born at 24 weeks! (miracle baby) While we were talking to her, Brian asked if he could hold Aliyah. Even special needs kids like Brian. Immediately her face lit up in a big grin. And while I was still talking to her mom, I kept one eye on Brian and Aliyah. He was telling her how pretty she is and how special she is and then HE. KISSED. HER!!!
My husband, who never even held a baby until we had one of our own, is the sweetest man alive!
This totally made my day.
Brian took the day off and joined me at the Foundation for Blind Children Infant Program this morning. He met a lady I've only sort of met, but who I know of through Sadie's OT. Her daughter has microcephaly, and we learned this morning she had been born at 24 weeks! (miracle baby) While we were talking to her, Brian asked if he could hold Aliyah. Even special needs kids like Brian. Immediately her face lit up in a big grin. And while I was still talking to her mom, I kept one eye on Brian and Aliyah. He was telling her how pretty she is and how special she is and then HE. KISSED. HER!!!
My husband, who never even held a baby until we had one of our own, is the sweetest man alive!
This totally made my day.
Friday, September 10, 2010
I can only imagine...
Heaven is on my heart today. We attended the first "infant program" at Foundation for Blind Children today. And as I looked around and participated in singing and playing and rejoicing with other moms, I couldn't help wishing none of us had to be there. But at the same time, I felt so grateful and so thankful that we all WERE there...such conflicting emotions.
This program consists of some activities, some music therapy, then a break while parents get to have a meeting BY THEMSELVES. Since today was the first day of the new "school year" we just went around and did introductions. I cried. I was crying before it was my turn. In fact, I cried on the way there in the car...and all the way home. Some days are harder than others, and today was a hard one. But I wasn't the only one who cried, and I felt like I was in good company. I was surrounded by other parents who deal with the same things and struggle with the same emotions.
As we got in the car to leave, I turned on the radio (to drown out the screaming) and the song "I can only imagine" was playing (by Mercy Me). That's when I lost it. The song is all about how he misses his father who passed away and he can't wait to get to heaven to see him again. Totally sad to begin with. But then I started really thinking about Heaven and what it is. I started imagining what it'll be like to see my baby made whole, in body and brain. What an amazing thing to hope for.
Don't get me wrong, I love Sadie the way she is, but there's nothing I want more for her than to be healed, to be whole, to be out of pain and suffering. And not just for her, but for me. When I thought about getting pregnant and having children, having a child like Sadie was my biggest fear. The idea of working so hard for development, of changing my life so drastically, of NEVER having an empty nest, was the scariest thing I could imagine. And here I am, living it. And yet I know this is NOT how God intended it to be, this is a consequence of living in a fallen world full of sin. This is nobody's fault. So, when I think about how it SHOULD be, I can't help but think about Heaven. A place where I will get to dance and sing and laugh with my complete and whole child who has no disabilities.
Right now she's looking at me with this goofy, happy look on her face while tears run from my eyes and I can just imagine her saying, "why are you so sad mama? I'm here and I'm alright, you should be happy!" You know how people say that when they have children it's amazing to realize how much they could actually love another person. For me, I look at my baby and I am amazed at how much she loves me. I am the best person she knows (besides Daddy, of course), and she loves me unconditionally. Even when I wish she was whole, even when I cry over what she SHOULD have been, even when I think about Heaven. She loves me so much that no matter where I am in the room, when she hears my voice she turns to find me. She loves me so much that she sleeps better up against my body. She loves me so much that she knows how to nurse and she falls asleep in my arms, and she's comforted by me best.
I have no idea what Sadie will be. I don't know what she'll be able to do and not do. I don't know if she'll ever read a book or ride a bike or play on the monkey bars. But I do know she'll be loved, and know that someday when she gets to Heaven she'll be able to do anything she wants!! For now, I can only imagine.
This program consists of some activities, some music therapy, then a break while parents get to have a meeting BY THEMSELVES. Since today was the first day of the new "school year" we just went around and did introductions. I cried. I was crying before it was my turn. In fact, I cried on the way there in the car...and all the way home. Some days are harder than others, and today was a hard one. But I wasn't the only one who cried, and I felt like I was in good company. I was surrounded by other parents who deal with the same things and struggle with the same emotions.
As we got in the car to leave, I turned on the radio (to drown out the screaming) and the song "I can only imagine" was playing (by Mercy Me). That's when I lost it. The song is all about how he misses his father who passed away and he can't wait to get to heaven to see him again. Totally sad to begin with. But then I started really thinking about Heaven and what it is. I started imagining what it'll be like to see my baby made whole, in body and brain. What an amazing thing to hope for.
Don't get me wrong, I love Sadie the way she is, but there's nothing I want more for her than to be healed, to be whole, to be out of pain and suffering. And not just for her, but for me. When I thought about getting pregnant and having children, having a child like Sadie was my biggest fear. The idea of working so hard for development, of changing my life so drastically, of NEVER having an empty nest, was the scariest thing I could imagine. And here I am, living it. And yet I know this is NOT how God intended it to be, this is a consequence of living in a fallen world full of sin. This is nobody's fault. So, when I think about how it SHOULD be, I can't help but think about Heaven. A place where I will get to dance and sing and laugh with my complete and whole child who has no disabilities.
Right now she's looking at me with this goofy, happy look on her face while tears run from my eyes and I can just imagine her saying, "why are you so sad mama? I'm here and I'm alright, you should be happy!" You know how people say that when they have children it's amazing to realize how much they could actually love another person. For me, I look at my baby and I am amazed at how much she loves me. I am the best person she knows (besides Daddy, of course), and she loves me unconditionally. Even when I wish she was whole, even when I cry over what she SHOULD have been, even when I think about Heaven. She loves me so much that no matter where I am in the room, when she hears my voice she turns to find me. She loves me so much that she sleeps better up against my body. She loves me so much that she knows how to nurse and she falls asleep in my arms, and she's comforted by me best.
I have no idea what Sadie will be. I don't know what she'll be able to do and not do. I don't know if she'll ever read a book or ride a bike or play on the monkey bars. But I do know she'll be loved, and know that someday when she gets to Heaven she'll be able to do anything she wants!! For now, I can only imagine.
Friday, August 6, 2010
Foundation for Blind Children
Last week we were visited by a lady named DeEtte from the Foundation for Blind Children. Since Sadie has been diagnosed with CVI (cortical visual impairment) she qualifies for services from FBC, and I had no idea how much of a blessing that would be!!DeEtte was super nice. She played with Sadie a little, she had a bag of tricks which included a big yellow and gold pom-pom. Sadie LOVED the pom-pom and DeEtte showed me that Sadie was even trying to touch it a little. She really likes yellow, I guess yellow and red are the easiest colors to see. (McDonald's is genius when it comes to marketing!) DeEtte was impressed and noticed that Sadie really sees a lot and is able to follow a lot of different things. She recommended getting Sadie a toy bar so that we can hang toys in front of her face and encourage her to bat at them.
She gave me a flyer about deep tissue massage, which is supposed to help organize Sadie so that she's not so sensorily stressed out (I don't think sensorily is a word, but it fits best with what I want to say) and she recommended the book where the flyer information was taken. I ordered it on Amazon that day.
But the best thing she told me about was the infant program at the FBC Center. This is a play group they do Friday mornings and it starts with music therapy, then lets the adults split off into a group where they can talk, while the children continue to play with other FBC staff. This sounds like MY kind of play group!! Other special needs parents? All the babies will be special instead of us being the only ones? Free music therapy?! How could it get any better?! (you can read more about it here)
This morning we attended for the first time. What DeEtte failed to tell us (probably because that's not really her department) is that in the summer time, they 1. have the infant program in a different building, and 2. it's only the music therapy portion, oh and 3. it starts at 9:30 instead of 9:00. So, when we showed up this morning, there was a decent amount of confusion, but we found it and we had fun...well, I had fun. Sadie made it through about the first song, then she fell asleep and slept through the whole thing!! haha!
We plan to go back next week (and maybe even participate). Then the week after next the program goes back to "normal" and we'll be able to participate in the entire thing. I'm really excited about this, and I'm so glad we've been hooked up with the Foundation for Blind Children.
I'm sorry it's hard to hear, but I thought you'd enjoy the last song we sang!
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