A Place for Elizabeth
Donation protected
I would like to introduce you to our daughter Elizabeth the youngest of four children. Elizabeth was a surprise, not because we weren’t planning a baby, but because she was supposed to be an 8 pound baby boy! She turned out to be a 4 ½” baby girl with Downs Syndrome, I guess that’s why they call it the “practice” of medicine.
We were still in the delivery room when the Dr. announced that she had “Downs Syndrome” and that she would probably need to be institutionalized to avoid the burden of raising a special needs child. It’s hard to believe that just 20 years ago special needs kids were still considered by many as a “write-off”, a tragic affliction visited on unsuspecting families anxiously awaiting a “normal” healthy child.
We were relatively inexperienced parents and even though we had three other children we were a “blended” family with its own unique set of challenges. This was the 2nd marriage for both my wife and I not to mention that we were both the product of single parent homes so we didn’t really have a model of how things were supposed to work. We were in for a turbulent journey to say the least.
Institutionalizing Elizabeth was never even a consideration we wanted her at home with us. There’s not enough time to tell the story of our journey over the last 20 years but I can say that what was supposed to be a burden has been one of the greatest joys of our life. Elizabeth has brought a kind of love and joy that I believe is unique to parents of special needs children. Special needs children are like a package wrapped in news paper that you would never suspect of being one of the most precious gifts you could ever receive.
The joy and love you experience doesn’t mean there are not challenges, there are, and many are significant. Most of these challenges are never seen outside the boundaries of the home. Sacrifices are made in private simply because they’re required. Jacque worked tirelessly for the first five years just teaching Elizabeth to eat, some basic sign language and things as simple as keeping her tongue in her mouth so she could swallow without choking. During that time I don’t think there were more than 1 or 2 nights that I didn’t lay beside her in bed at night and sing “The Muffin Man” song to help her to go to sleep which could take from 30 minutes to 2 hours. Her brother and sisters had to make sacrifices as well. Simple things like a family outing or going out for dinner had to be carefully planned or avoided all together. The extra time required to care for and teach a special needs child reduces the time you spend with your other children.
It’s important to mention that we consider ourselves blessed among special needs parents. So many parents face challenges beyond imagination and often without ever experiencing a “hug” or an “I love you” from their children simply because of the severity of their child’s condition.
Much of the success our special needs kids experience in overcoming challenges is only possible through the selfless support of friends, family and often the entire community. We've been so fortunate that at every point in Elizabeth’s life God has placed people around her to encourage her and help her reach her potential.
We chose to enroll Elizabeth in a “full inclusion” program in public school so she would be surrounded by kids that would challenge her to try new things as well as learn how to interact with the world around her.
Elizabeth attended Simi Valley High School in CA where she was surrounded by the most amazing group of students and teachers we could have asked for. Their selfless support was demonstrated in many ways through those years but it exceeded our wildest expectations when they voted her Prom Queen her senior year. Graduating from high school was a great milestone in her life and only possible through the support and love of so many people to whom we are eternally grateful!
In her life outside of school we’ve tried to keep her active and engaged. That part has been easy because she wants to try everything. More than just trying she’s shown that she’s a great athlete. She’s participated in cheer, softball, soccer, dance, swimming, basket ball, bowling and horseback riding. She’s been surfing, rock climbing, parasailing, snow skiing, camping and ATV riding. She loves to go to Starbucks for her favorite lemonade, the beach and Disneyland. In so many ways she's just like any other kid she loves to have fun.
One of the most difficult things we’ve had to deal with in watching her grow up is seeing her friends slowly outgrow her as time passes. They never forget her or move completely out of her life but they do grow up. It’s absolutely heart breaking at times to see her friends slowly grow more distant as they become young adults moving toward college, jobs, marriage and families of their own. Elizabeth is stuck in time somewhere between 11 and 14 years old. Her body continues to age and she learns new things and skills but her level of cognitive development will be minimal from this point forward.
She knows she has Downs Syndrome and she knows that she’s in a different place than other kids. Sometimes it hard for her to bear because she’s so close to that other world but just not quite there. It’s an eclectic mix of “hey he’s cute” and “can I have a kids menu and crayons”. She deals with the age issue by sayings things like “I’m just going to stay single and live with you guys, I’m not ready for a relationship”. She tells us everyday at least a dozen times that she loves us and just many times she cracks us up with a joke or a unique observation on life.
Elizabeth is good at making videos and has a dream of being a video producer and making videos for other kids including one about her life with Downs Syndrome. She has always wanted a dream room like the one on the “iCarly” show or “Hanna Montana” with a secret closet and a list of other features. She wants to have a space where can she be surrounded by some of the things she sees in these shows. These shows are a place where she finds kids that are like her or at least it seems that way. The kids on these shows are stuck in time just like Elizabeth, she can watch shows from yesterday or 10 years ago and the kids in those shows are still the same, they haven’t changed. It doesn’t matter how many times she watches an episode they never change. They still have the same interest and they still face the same challenges over and over just like her. This is a place where she can feel secure where she doesn’t get left behind and she has some small amount of control.
That brings us to the reason for this GoFundMe campaign.
Elizabeth talks frequently about her dream room and when she will have it. It’s very hard for here to understand why we can’t just do it. It’s been her dream as long as I can remember and although it’s been our goal we haven’t been able to make it happen.
We want to build that “Dream Room” for Elizabeth, a place where she can retreat to when the real world seems to be passing her by. It will be a safe place where it’s ok for her to be a kid as long as she needs to be.
We have very limited resources so we have to be really creative. We’ve found a house that was abandoned during construction that we’re going purchase. It’s a two story house and we want to turn the top floor into Elizabeth’s apartment (Dream Room) with all the things that she’s always imagined it would have.
We’ll be doing all the work ourselves to help lower the cost. The things that Elizabeth dreams of having in that room are not financial feasible right now but at the same time we feel like this is something we can’t put off. That’s why we’ve started this campaign to try and make some of those things possible.
If you would like to help we would be eternally grateful! We don't want anyone to feel obligated; Elizabeth is surrounded by people that love her. There is no bad outcome to this campaign.
Thank you for taking the time to read this we really appreciate it! We'll be adding more pictures soon.
Jeff, Jacque & Elizabeth
We were still in the delivery room when the Dr. announced that she had “Downs Syndrome” and that she would probably need to be institutionalized to avoid the burden of raising a special needs child. It’s hard to believe that just 20 years ago special needs kids were still considered by many as a “write-off”, a tragic affliction visited on unsuspecting families anxiously awaiting a “normal” healthy child.
We were relatively inexperienced parents and even though we had three other children we were a “blended” family with its own unique set of challenges. This was the 2nd marriage for both my wife and I not to mention that we were both the product of single parent homes so we didn’t really have a model of how things were supposed to work. We were in for a turbulent journey to say the least.
Institutionalizing Elizabeth was never even a consideration we wanted her at home with us. There’s not enough time to tell the story of our journey over the last 20 years but I can say that what was supposed to be a burden has been one of the greatest joys of our life. Elizabeth has brought a kind of love and joy that I believe is unique to parents of special needs children. Special needs children are like a package wrapped in news paper that you would never suspect of being one of the most precious gifts you could ever receive.
The joy and love you experience doesn’t mean there are not challenges, there are, and many are significant. Most of these challenges are never seen outside the boundaries of the home. Sacrifices are made in private simply because they’re required. Jacque worked tirelessly for the first five years just teaching Elizabeth to eat, some basic sign language and things as simple as keeping her tongue in her mouth so she could swallow without choking. During that time I don’t think there were more than 1 or 2 nights that I didn’t lay beside her in bed at night and sing “The Muffin Man” song to help her to go to sleep which could take from 30 minutes to 2 hours. Her brother and sisters had to make sacrifices as well. Simple things like a family outing or going out for dinner had to be carefully planned or avoided all together. The extra time required to care for and teach a special needs child reduces the time you spend with your other children.
It’s important to mention that we consider ourselves blessed among special needs parents. So many parents face challenges beyond imagination and often without ever experiencing a “hug” or an “I love you” from their children simply because of the severity of their child’s condition.
Much of the success our special needs kids experience in overcoming challenges is only possible through the selfless support of friends, family and often the entire community. We've been so fortunate that at every point in Elizabeth’s life God has placed people around her to encourage her and help her reach her potential.
We chose to enroll Elizabeth in a “full inclusion” program in public school so she would be surrounded by kids that would challenge her to try new things as well as learn how to interact with the world around her.
Elizabeth attended Simi Valley High School in CA where she was surrounded by the most amazing group of students and teachers we could have asked for. Their selfless support was demonstrated in many ways through those years but it exceeded our wildest expectations when they voted her Prom Queen her senior year. Graduating from high school was a great milestone in her life and only possible through the support and love of so many people to whom we are eternally grateful!
In her life outside of school we’ve tried to keep her active and engaged. That part has been easy because she wants to try everything. More than just trying she’s shown that she’s a great athlete. She’s participated in cheer, softball, soccer, dance, swimming, basket ball, bowling and horseback riding. She’s been surfing, rock climbing, parasailing, snow skiing, camping and ATV riding. She loves to go to Starbucks for her favorite lemonade, the beach and Disneyland. In so many ways she's just like any other kid she loves to have fun.
One of the most difficult things we’ve had to deal with in watching her grow up is seeing her friends slowly outgrow her as time passes. They never forget her or move completely out of her life but they do grow up. It’s absolutely heart breaking at times to see her friends slowly grow more distant as they become young adults moving toward college, jobs, marriage and families of their own. Elizabeth is stuck in time somewhere between 11 and 14 years old. Her body continues to age and she learns new things and skills but her level of cognitive development will be minimal from this point forward.
She knows she has Downs Syndrome and she knows that she’s in a different place than other kids. Sometimes it hard for her to bear because she’s so close to that other world but just not quite there. It’s an eclectic mix of “hey he’s cute” and “can I have a kids menu and crayons”. She deals with the age issue by sayings things like “I’m just going to stay single and live with you guys, I’m not ready for a relationship”. She tells us everyday at least a dozen times that she loves us and just many times she cracks us up with a joke or a unique observation on life.
Elizabeth is good at making videos and has a dream of being a video producer and making videos for other kids including one about her life with Downs Syndrome. She has always wanted a dream room like the one on the “iCarly” show or “Hanna Montana” with a secret closet and a list of other features. She wants to have a space where can she be surrounded by some of the things she sees in these shows. These shows are a place where she finds kids that are like her or at least it seems that way. The kids on these shows are stuck in time just like Elizabeth, she can watch shows from yesterday or 10 years ago and the kids in those shows are still the same, they haven’t changed. It doesn’t matter how many times she watches an episode they never change. They still have the same interest and they still face the same challenges over and over just like her. This is a place where she can feel secure where she doesn’t get left behind and she has some small amount of control.
That brings us to the reason for this GoFundMe campaign.
Elizabeth talks frequently about her dream room and when she will have it. It’s very hard for here to understand why we can’t just do it. It’s been her dream as long as I can remember and although it’s been our goal we haven’t been able to make it happen.
We want to build that “Dream Room” for Elizabeth, a place where she can retreat to when the real world seems to be passing her by. It will be a safe place where it’s ok for her to be a kid as long as she needs to be.
We have very limited resources so we have to be really creative. We’ve found a house that was abandoned during construction that we’re going purchase. It’s a two story house and we want to turn the top floor into Elizabeth’s apartment (Dream Room) with all the things that she’s always imagined it would have.
We’ll be doing all the work ourselves to help lower the cost. The things that Elizabeth dreams of having in that room are not financial feasible right now but at the same time we feel like this is something we can’t put off. That’s why we’ve started this campaign to try and make some of those things possible.
If you would like to help we would be eternally grateful! We don't want anyone to feel obligated; Elizabeth is surrounded by people that love her. There is no bad outcome to this campaign.
Thank you for taking the time to read this we really appreciate it! We'll be adding more pictures soon.
Jeff, Jacque & Elizabeth
Organizer
Jeff Erb
Organizer
Kingman, AZ
