Thursday, December 27, 2012

Meet the Delaneys

 



We (Carrie and Rich) have been married since June of 2007. Going into our marriage, we both knew we wanted to have a family. We discussed the possibility of our future
 including the adoption of a child with special needs, but decided to wait and see what Mother Nature had in store for us first.


 

Carrie loves to travel and explore other cultures. Before getting married, Carrie spent many months studying abroad and travelling around the world. She feels like her
 amazing experiences opened her eyes to so many new and different experiences and ways of thinking. She is very grateful for those experiences.
 
 

Carrie's current favorite hobby is enjoying her children. She loves spending time with them - doing just about anything. She loves to take fun photos of them and capture their unique personalities at every new stage of development.
 
Carrie is a special education teacher in a program for children with cognitive disabilities. She decided long ago that she wanted to be a special education teacher after spending a summer as a nanny for a child with Down syndrome. She fell in love with him and knew this was the path she wanted to take in life. Throughout junior high and high school, Carrie volunteered in special education classrooms in her schools and with Special Olympics. After high school she went on to study special education, work as a PCA, and volunteer as part of the professional staff at a summer camp for teens with Down syndrome.
An extra bonus of being a teacher is having summers and school breaks off with the kids. The kids have a nice mix of going to an amazing in-home daycare where they are loved, cherished, challenged and educated and being home with Mom. As much as she enjoys being a teacher and the kids love daycare, Carrie is very open to the idea of staying home if that is what would be best for the children. She was home for 2 years and would do it again in a heartbeat if the family needed her home.

 



 

Rich has participated in athletics his whole life. He has always loved lifting weights. Now that he is a father he realizes the importance of setting a good example, so he has built a weight room in the basement of the house. He is excited to have a weightlifting routine to concentrate on being healthy and looks forward to enjoying this hobby with his kids when they are old enough. He feels that it will help them be better at whatever sport they decide to participate in and may even be an incentive to have friends over.  Rich is also a creative type that is always busy designing projects that he would like to do “someday”.  He loves to cook and never makes anything the same way twice - as much as Carrie would like him to sometimes. His favorite meal of the week, though, is the chocolate chip pancakes he makes on the weekends for the family. For the past 16 years, he has worked in computers for a large company in the banking industry. Rich works from home most days, which provides a lot of flexibility for the family.


 
 
Lylli was born on Halloween of 2008. She is a very happy, bright and curious girl. She loves horses and takes riding lessons at a local stable. She is learning to read and loves to read her books to everyone. She loves being a big sister and has been so great to her sister and brother. Lylli is very proud that, "out of all the children in the whole world, God chose me to be Gracie's big sister." She loves to sing lullabies to her brother and is so proud when he does something new. One of the qualities that we are most proud of about Lylli is her acceptance and compassion for children with special needs. When she has spent time in Carrie's classroom, she has never been uncomfortable or even looked at anyone differently. She just takes each person for who they are and sees the positive in them. We are so proud of her for that.




Gracie was born in November of 2010. We knew prenatally that she had Down syndrome and a complex heart defect, so we had time to research and were prepared to fight for her when she was born. Gracie had her first heart surgery 10 days after she was born and her second when she was almost 3 months old. When the doctors in Minnesota told us they did not have any good options for Gracie and that she would not live long enough to go to school, we found doctors who could give us hope. We found the best cardiac doctors in the world at Boston Children's Hospital and took her there for heart surgery. Gracie's first surgery had made her heart into a one chamber heart because the left side of her heart had been too small to function properly. In Boston, they turned her heart into a fully functioning, 4 chamber heart!
Gracie spent a lot of time in the hospital, but between those times, she was a happy, thriving baby. She had a feeding tube because she had struggled to eat by mouth. She went to therapy to help her learn to eat and to strengthen her muscles. She loved her sister and her family. She loved to play with toys and roll all over the floor. She was very, very loved.
In April of 2012, Gracie contracted a virus that led to pneumonia. She was admitted to the hospital because of low oxygen saturations and the amount of work it was taking her to breathe. She ended up on the ventilator. After a few days she was able to be taken off the ventilator and was doing well. However, later that night she began to struggle to breathe again and suddenly crashed. The doctors and nurses tried very hard, but could not save her. Not a moment goes by that we don't miss her and wish she were here with us. She taught us more than we could put into words in her 17 months with us. We have thought long and hard about what we want for our family. We know that we could never in a million years replace Gracie - we wouldn't even try. But, Gracie taught us that we want to raise a child with Down syndrome. We loved supporting her through challenges and struggles and the awesome celebrations for every milestone she achieved. 




 
 


Mickey was born in June of 2012. He is the happiest little boy that one could ever meet. He smiles all the time. He loves his sister and she can make him laugh better than anyone else. He has been an amazing blessing to our family. Mickey is growing, changing and learning so fast! Every day there seems to be something new that he can do. He loves any sport he can play with a ball. He is constantly throwing, kicking and hitting balls around the house with a huge smile on his face. He also loves cars, trucks, airplanes, helicopters and anything else with wheels.

 

We spend most of our free time doing things as a family.  We moved into a new house this year and we love it. In our old house we had a beautiful garden dedicated to Gracie and we look forward to planting another one.  


We are a hard working, middle income family with solid careers. We live in a suburb of Minneapolis in a two-story home with room for everyone! Our neighborhood is safe and in a good location with a diverse mix of younger and older families, resulting in plenty of great kids for our children to play with. We have two dogs who are wonderful with children. We live in a school district with a good reputation. The only experience our children, so far, have had with the district is through Early Intervention for Gracie, but they were wonderful to work with. Many members of our extended family have graduated from and even teach in the district. We live about 25 minutes away from Minneapolis Children's Hospital, which is one of the best children's hospitals in the midwest and does all of the cardiac surgeries in the area. We also live near many smaller hospitals, clinics and therapy centers.



We enjoy spending time at Carrie’s parents' cabin on a lake as well as time in the country at Rich’s parents.  We encourage our children to be active, so we look to participate in activities that encourage that. Lylli has been involved in dance, swimming, gymnastics, soccer, baseball and horseback riding lessons.  Our children are very happy and well adjusted.  We truly believe that siblings of people with Down syndrome tend to have an added level of depth – we already see that in Lylli because of the 17 months that she spent with Gracie.  
We work hard to honor Gracie's memory and keep her spirit alive. The first holiday season without Gracie, we gathered our family and served dinner at the Ronald McDonald House as well as organized a toy drive that collected over 500 toys that we donated to Toys for Tots in her honor. Last year, we started a pajama drive for Children's Hospital of Minneapolis - w donated nearly 500 pairs of pajamas, slippers, etc. It feels so great to honor Gracie by paying forward the kindness that so many people have given to us.
We participate in an annual Down syndrome walk – Our team has had over 100 walkers for the past few years and is always one of the biggest teams in attendance – these walkers are just a small segment of our support system.  We will continue doing things to honor the baby that we, and so many others, love so much.
We have a very supportive extended family. Our children have grandparents, aunts, uncles and cousins who love them VERY much and are very excited about the possibility of another child coming into our family. We have a strong network of friends and resources within the Ds community that are always available to answer questions and offer ideas when we need them. We have accumulated an amazing team of doctors, therapists, teachers, and even surgeons for Gracie – people who genuinely cared about her and wanted the best for her. We would love to support another child with this amazing team. We feel that we have proven, through our journey with Gracie, that we will search out and do whatever it takes to give our children the best chances in life.   
Rich’s family has two members with Ds – they are both in their forties – so his family has been around people with Ds for a long time.  Carrie's family has done respite care, PCA work, worked as teaching assistants in special education classrooms and also opened their home for foster care.  Both of our families have quite a bit of experience with people who have special needs. We have a lot of support.
 
We encourage you to look at Gracie’s caringbridge site (www.caringbridge.org/visit/graciedelaney).  We hope that our journey with her will demonstrate how much we love our children and convey that we will do whatever we have to do for them.