I was just cleaning out my document folder and found this memory that I wrote right after we appeared on the Extreme Makeover Home Edition television show....
Our story began over 8 years ago when we brought a new foster baby home from the hospital. This was nothing new for us, in the past 25 years we had fostered hundreds of sick babies. But this little guy was a little more special. He was born with Osteogenesis Imperfecta and he was never going back to his biological parents.
We brought Jake home at 10 days old. We dealt with some of the more common issues with OI babies. Hernias were repaired, pneumonias were fought off, we used oxygen for a while, had a nissen procedure done and a g-tube placed. Once we had him physically stable, it was time to start the therapies.
We started off by going to Easter Seals. Though the years, we had several children with special needs and we knew that Easter Seals had all the services that we would need in one location. Jake did Physical Therapy, Occupational therapy, speech therapy, feeding therapy, developmental therapy, play therapy and water therapy.
At one visit, Jake’s occupational therapist said that she did not know what else to do to help Jake be more independent because of the limitations of our house. She jokingly said all I can do is build you a new house. Then she asked how we felt about applying for Extreme makeover Home Edition. We refused. After all, we had a home and the people on that show did not have homes that were inhabitable. She kept asking and pushing me to let her nominate our family. Finally after over a year of this, she came to our home for a therapy session. She went though every room and showed us what could be done if money were no object. It was shocking to us. With the correct adaptations our son could be totally independent!
All of this time, we thought we would just take care of him forever. We stressed that we wanted him independent, but in reality we took total care of him. We decided that it was a disservice to him to keep him dependent on us, so we allowed Angie to nominate us. There were forms to fill out, and videos to do. Every 6 months she would send more photos and letters. Once a year she sent a fresh application and video. After 2 years they made contact. But that was not the end. They were in contact, asking for more information, more photos, more newspaper articles, faxes, texts, photos…..on and on for over a year. We were interviewed, a background check was done and references were contacted to make sure our story was true. We don’t actually know what all was done and how it was done because the show is very good about keeping things secret. That is part of the fun of the show, the surprise. And surprise is not even close to describing what happens. This is my humorous take on the whole shocking adventure.
We were told that we were one of 5 families in Illinois that were finalists for October. We were told the date that, either Ty would come to our door or we would get a phone call. What a tortuous few weeks it was. Afraid to leave the house in case ‘they’ called, Afraid to talk to anyone for fear of saying the wrong thing, Afraid of getting disqualified because someone in the family got a speeding ticket. Then the day arrived. Our family was in the back of the house, eating donuts and laughing, playing a game to pass the time waiting for the phone call. There were people from our town outside our house and we felt bad for them saying how disappointed they would be when no one came. We all planned on working on the chosen family’s house. Then we heard the famous bullhorn, “Good morning Grys Family!” All of the kids took off running, I stood there stunned, picked up Jake and slowly stumbled out the front door. (This is when I entered my coma) There were cameras and people everywhere. I remember asking “Is this real?”
There were hundreds of people all busy doing things. It looked like a hive of bees, very busy bees. There were interviews, photos, more interviews and we all had a ‘deer in the headlights’ look on our faces. We asked for it, prayed for it, hoped for it, but when it actually happened we all were in shock. Soon we were tossed into a limo with the clothing we had rapidly packed (one suitcase was full of splints, acewraps, fiberglass casting material, scissors, and any other medical equipment I could grab.) I stuck advil, hydorocodone and valium in my purse and we were off. At this point they took our cell phones and computers and we were not allowed to watch tv. Isolated from the world (kidnapped by ABC!) In the limo I looked at my husband and panic set in. We only had $60 cash between us! No worries, ABC provided all of our food and lodging for the trip, but it was a helpless feeling being so far away from home and no cash on hand. Next we were put on a plane to Disney World and a wonderful man named Matthew met us in the airport in Orlando. Mathew was a blessing. He stayed with us until he put us on the airplane to return home. He made sure the kids got to see and ride whatever they wanted and made reservations so we never stood in a line to eat. A dream vacation. (Too bad I can’t remember much because of my coma.) After 4 days it was time to board another airplane to go home, where ever that was! What a weird feeling to not be able to picture your home, where you will be sleeping tonight!
We realized early on that strangers were going to go into our home and pack up every single thing we owned. Strangers were going to touch ALL of our stuff. Strangers were going to see the dust bunnies, (or full grown rabbits) behind our refrigerator. This caused a panic attack thinking of how dirty it was under the beds! Oh well, let it go and move on. It was over and done with.
We arrived at the set. (it is a real TV show with cameras, directors, actors, designers and people watching the filming) We had just adjusted to the new life at Disney, being led around by the hand by our hero, Matthew. Now we were in a new world. When that bus moved, our lives would be forever altered. When we climbed out of the limo, thousands of people were screaming our name. Everyone we knew and everyone else in the world it seemed, Just a sea of smiling faces, yelling our names. So surreal! Then they started chanting “move that bus”. When they finally did move the bus, we were stunned. The house was beautiful. How did they know what colors and styles we liked? But wait, there is more.
We entered the house and it was beautiful. It looked like a big clean beach condo! The consensus was AWSOME!!! Everyone got to run and look at their bedrooms, but what we all wanted to see was Jake’s room. We couldn’t wait, THIS was what it was all about. And we have to say that ABC and the designers hit a home run! Jake’s room was big enough for all of his ‘stuff’. His bed is a tempurpedic mattress that is sunken even with the floor. No way can he fall out of bed. But they thought of everything. There was also a twin bed that can have rails put on for when he is broken and needs to be cared for, that way we don’t have to lift and lower him to the floor. There is a swing mounted in the ceiling for his favorite activity, swinging. The floors are all cork, softer than wood or tile. Great to scoot on or push a wheelchair! The bathroom is amazing! There is a stool sunk into the floor so he can get on and off himself. It has an automatic flush and even a bidet to wash and dry him! He also has a regular toilet for when he is broken. Along with this is a wonderful commode/shower chair that is on wheels to use when he is casted. We put him in it, roll over the potty, take care of business, roll to the shower and then to the bedroom. Better than that, there is a large stainless steel sink that is at waist height. There is a padded countertop attached to it so again, when he is broken, we can bathe him, dress him, cast him at our height, so much better on the back! They also had a custom sink made that sits on the floor. It is one of a kind, with motion detector water supply and a huge mirror so he can brush his teeth and eventually shave there. There is a roll in shower, but it is functional at two heights. One regular height with an additional hand held and another shower head about 2 feet off of the floor with another hand held near the floor. There is a electrical on off, temperature switch that may even be voice activated (some day we will be able to read all of our instruction manuals!) His bathroom floor is a soft tile, and is heated so his little bum will stay warm as he scoots around.
Then there is the indoor therapy pool. It is 9ft x 9ft and about 5 ft deep. There are steps on one side and a bench on the other that is just the right height for him to walk on. The temp is supposed to be around 94, but he likes it a little warmer. This too is surrounded by the soft tile flooring.
A wonderful tour of our new home, though we still felt like we were on vacation, just moved to a different place. Then came the shocker. All of the volunteers that stood and watched us come home started carrying in boxes. Then more boxes and more boxes until the basement and garage were full of boxes of our old ‘stuff’. We contemplated just sending it all to an auction house, but we needed to find things like our underwear, birth certificates, photos, family movies, high school diplomas….just little things like that. So we started the horror of going through 25 years of ‘stuff’, Gathered by 9 people. Multiply that and you can only imagine!
We worked for weeks trying to get things straightened out and finding somewhere to put what we still needed to keep, And finding somewhere to donate the rest of it. I am talking trailers full of stuff, goodwill will never be the same!!! During this time, we received phone calls and letters from around the country. Some people were just well wishers, others were people with OI that wanted to talk to someone else with OI. What a gift to be able to be a contact person for all of these people! We were able to put some young adults in touch with other young adults that we knew and friendships were formed.
As soon as we were getting our feet on the ground, it was time to decorate for the holidays. So we drug out all of our decorations and tried to find someplace to put them so they looked like they fit there. This took at least a week! Before we knew it it was time to take down the decorations and pack them away, which took another week. All during this time, we had to keep the house perfect because there were certain people we had to give tours to. We never knew who was going to call next!
Finally, things started to settle down. I stopped acting like I was the keeper of the museum and started ‘nesting’ in our home. I moved some things and changed a few things. Not much, little decorator touches. We are just getting our feet on the ground. I tell friends I have just come out of my coma and have very few vivid memories. The last few months are like watching a movie in fast forward. I have flashes of things that I can remember and other things are just gone. LOL. I run into someone and start talking to them and they tell me that they were there the day we left, or the day we got home and we talked then. They probably think I need psychiatric help because that moment in time was a blank. Sorry friends, if you called or wrote and I did not get back to you, I was trying to function in a haze. I am now back to normal so if there is anyone that I did not get back to, you might want to try again. I guess I should not use the word ‘normal’ as I have never been that, but I am back to my old self.
What a gift and joy this experience has been. What a change in our lives. We went from giving total care to Jake to him being totally independent. He can wash his hands, get a drink, fix a sandwich, answer the phone (bad news!) and open the door to go outside. We are implementing new rules, things that other kids learn at 2 or 3 or 4 Jake is learning now. You have to ask to use the phone, you don’t need 4 showers a day, you can’t go outside without asking…..and on and on.
Our life has changed, but what a wonderful change
Our story began over 8 years ago when we brought a new foster baby home from the hospital. This was nothing new for us, in the past 25 years we had fostered hundreds of sick babies. But this little guy was a little more special. He was born with Osteogenesis Imperfecta and he was never going back to his biological parents.
We brought Jake home at 10 days old. We dealt with some of the more common issues with OI babies. Hernias were repaired, pneumonias were fought off, we used oxygen for a while, had a nissen procedure done and a g-tube placed. Once we had him physically stable, it was time to start the therapies.
We started off by going to Easter Seals. Though the years, we had several children with special needs and we knew that Easter Seals had all the services that we would need in one location. Jake did Physical Therapy, Occupational therapy, speech therapy, feeding therapy, developmental therapy, play therapy and water therapy.
At one visit, Jake’s occupational therapist said that she did not know what else to do to help Jake be more independent because of the limitations of our house. She jokingly said all I can do is build you a new house. Then she asked how we felt about applying for Extreme makeover Home Edition. We refused. After all, we had a home and the people on that show did not have homes that were inhabitable. She kept asking and pushing me to let her nominate our family. Finally after over a year of this, she came to our home for a therapy session. She went though every room and showed us what could be done if money were no object. It was shocking to us. With the correct adaptations our son could be totally independent!
All of this time, we thought we would just take care of him forever. We stressed that we wanted him independent, but in reality we took total care of him. We decided that it was a disservice to him to keep him dependent on us, so we allowed Angie to nominate us. There were forms to fill out, and videos to do. Every 6 months she would send more photos and letters. Once a year she sent a fresh application and video. After 2 years they made contact. But that was not the end. They were in contact, asking for more information, more photos, more newspaper articles, faxes, texts, photos…..on and on for over a year. We were interviewed, a background check was done and references were contacted to make sure our story was true. We don’t actually know what all was done and how it was done because the show is very good about keeping things secret. That is part of the fun of the show, the surprise. And surprise is not even close to describing what happens. This is my humorous take on the whole shocking adventure.
We were told that we were one of 5 families in Illinois that were finalists for October. We were told the date that, either Ty would come to our door or we would get a phone call. What a tortuous few weeks it was. Afraid to leave the house in case ‘they’ called, Afraid to talk to anyone for fear of saying the wrong thing, Afraid of getting disqualified because someone in the family got a speeding ticket. Then the day arrived. Our family was in the back of the house, eating donuts and laughing, playing a game to pass the time waiting for the phone call. There were people from our town outside our house and we felt bad for them saying how disappointed they would be when no one came. We all planned on working on the chosen family’s house. Then we heard the famous bullhorn, “Good morning Grys Family!” All of the kids took off running, I stood there stunned, picked up Jake and slowly stumbled out the front door. (This is when I entered my coma) There were cameras and people everywhere. I remember asking “Is this real?”
There were hundreds of people all busy doing things. It looked like a hive of bees, very busy bees. There were interviews, photos, more interviews and we all had a ‘deer in the headlights’ look on our faces. We asked for it, prayed for it, hoped for it, but when it actually happened we all were in shock. Soon we were tossed into a limo with the clothing we had rapidly packed (one suitcase was full of splints, acewraps, fiberglass casting material, scissors, and any other medical equipment I could grab.) I stuck advil, hydorocodone and valium in my purse and we were off. At this point they took our cell phones and computers and we were not allowed to watch tv. Isolated from the world (kidnapped by ABC!) In the limo I looked at my husband and panic set in. We only had $60 cash between us! No worries, ABC provided all of our food and lodging for the trip, but it was a helpless feeling being so far away from home and no cash on hand. Next we were put on a plane to Disney World and a wonderful man named Matthew met us in the airport in Orlando. Mathew was a blessing. He stayed with us until he put us on the airplane to return home. He made sure the kids got to see and ride whatever they wanted and made reservations so we never stood in a line to eat. A dream vacation. (Too bad I can’t remember much because of my coma.) After 4 days it was time to board another airplane to go home, where ever that was! What a weird feeling to not be able to picture your home, where you will be sleeping tonight!
We realized early on that strangers were going to go into our home and pack up every single thing we owned. Strangers were going to touch ALL of our stuff. Strangers were going to see the dust bunnies, (or full grown rabbits) behind our refrigerator. This caused a panic attack thinking of how dirty it was under the beds! Oh well, let it go and move on. It was over and done with.
We arrived at the set. (it is a real TV show with cameras, directors, actors, designers and people watching the filming) We had just adjusted to the new life at Disney, being led around by the hand by our hero, Matthew. Now we were in a new world. When that bus moved, our lives would be forever altered. When we climbed out of the limo, thousands of people were screaming our name. Everyone we knew and everyone else in the world it seemed, Just a sea of smiling faces, yelling our names. So surreal! Then they started chanting “move that bus”. When they finally did move the bus, we were stunned. The house was beautiful. How did they know what colors and styles we liked? But wait, there is more.
We entered the house and it was beautiful. It looked like a big clean beach condo! The consensus was AWSOME!!! Everyone got to run and look at their bedrooms, but what we all wanted to see was Jake’s room. We couldn’t wait, THIS was what it was all about. And we have to say that ABC and the designers hit a home run! Jake’s room was big enough for all of his ‘stuff’. His bed is a tempurpedic mattress that is sunken even with the floor. No way can he fall out of bed. But they thought of everything. There was also a twin bed that can have rails put on for when he is broken and needs to be cared for, that way we don’t have to lift and lower him to the floor. There is a swing mounted in the ceiling for his favorite activity, swinging. The floors are all cork, softer than wood or tile. Great to scoot on or push a wheelchair! The bathroom is amazing! There is a stool sunk into the floor so he can get on and off himself. It has an automatic flush and even a bidet to wash and dry him! He also has a regular toilet for when he is broken. Along with this is a wonderful commode/shower chair that is on wheels to use when he is casted. We put him in it, roll over the potty, take care of business, roll to the shower and then to the bedroom. Better than that, there is a large stainless steel sink that is at waist height. There is a padded countertop attached to it so again, when he is broken, we can bathe him, dress him, cast him at our height, so much better on the back! They also had a custom sink made that sits on the floor. It is one of a kind, with motion detector water supply and a huge mirror so he can brush his teeth and eventually shave there. There is a roll in shower, but it is functional at two heights. One regular height with an additional hand held and another shower head about 2 feet off of the floor with another hand held near the floor. There is a electrical on off, temperature switch that may even be voice activated (some day we will be able to read all of our instruction manuals!) His bathroom floor is a soft tile, and is heated so his little bum will stay warm as he scoots around.
Then there is the indoor therapy pool. It is 9ft x 9ft and about 5 ft deep. There are steps on one side and a bench on the other that is just the right height for him to walk on. The temp is supposed to be around 94, but he likes it a little warmer. This too is surrounded by the soft tile flooring.
A wonderful tour of our new home, though we still felt like we were on vacation, just moved to a different place. Then came the shocker. All of the volunteers that stood and watched us come home started carrying in boxes. Then more boxes and more boxes until the basement and garage were full of boxes of our old ‘stuff’. We contemplated just sending it all to an auction house, but we needed to find things like our underwear, birth certificates, photos, family movies, high school diplomas….just little things like that. So we started the horror of going through 25 years of ‘stuff’, Gathered by 9 people. Multiply that and you can only imagine!
We worked for weeks trying to get things straightened out and finding somewhere to put what we still needed to keep, And finding somewhere to donate the rest of it. I am talking trailers full of stuff, goodwill will never be the same!!! During this time, we received phone calls and letters from around the country. Some people were just well wishers, others were people with OI that wanted to talk to someone else with OI. What a gift to be able to be a contact person for all of these people! We were able to put some young adults in touch with other young adults that we knew and friendships were formed.
As soon as we were getting our feet on the ground, it was time to decorate for the holidays. So we drug out all of our decorations and tried to find someplace to put them so they looked like they fit there. This took at least a week! Before we knew it it was time to take down the decorations and pack them away, which took another week. All during this time, we had to keep the house perfect because there were certain people we had to give tours to. We never knew who was going to call next!
Finally, things started to settle down. I stopped acting like I was the keeper of the museum and started ‘nesting’ in our home. I moved some things and changed a few things. Not much, little decorator touches. We are just getting our feet on the ground. I tell friends I have just come out of my coma and have very few vivid memories. The last few months are like watching a movie in fast forward. I have flashes of things that I can remember and other things are just gone. LOL. I run into someone and start talking to them and they tell me that they were there the day we left, or the day we got home and we talked then. They probably think I need psychiatric help because that moment in time was a blank. Sorry friends, if you called or wrote and I did not get back to you, I was trying to function in a haze. I am now back to normal so if there is anyone that I did not get back to, you might want to try again. I guess I should not use the word ‘normal’ as I have never been that, but I am back to my old self.
What a gift and joy this experience has been. What a change in our lives. We went from giving total care to Jake to him being totally independent. He can wash his hands, get a drink, fix a sandwich, answer the phone (bad news!) and open the door to go outside. We are implementing new rules, things that other kids learn at 2 or 3 or 4 Jake is learning now. You have to ask to use the phone, you don’t need 4 showers a day, you can’t go outside without asking…..and on and on.
Our life has changed, but what a wonderful change
