A meeting of hearts and minds – the story of Danielle and Jennifer…
Two DVMS mothers, who had not yet met, learned during their pregnancies that their unborn children both had an extra 21st chromosome – in other words they would have Down syndrome. Separately, we learned how our children would have cognitive and learning delays, that they would have low muscle tone and that they would take longer to do things than their peers or would perhaps never achieve basic milestones (such as walk, talk, read etc.). More worryingly, we were told they could also have serious medical problems ranging from heart and bowel diseases, to leukemia, and possibly hearing and vision problems. But we were also told how they could experience good health, they will likely talk, read, walk and run. We were also told that our children would enrich our lives and, with changing social attitudes towards people with disabilities, they could live full, happy, and productive lives.
In June 2012, Tony Evans introduced us to each other at the end of school year picnic. Danielle was pregnant and expecting a little girl in August. Jennifer’s little boy was 2 months old. Before Danielle’s baby was born we met for coffee; we connected that day on so many levels and have since agreed how we both walked away knowing there was a special bond between us that would only strengthen and grow with time. Our experiences in the first year may have differed, but our hopes and dreams for our children and their community are the same. In telling you about an upcoming event to support the Down Syndrome Association of Hamilton, we would like to share our stories with you:
The Story of Owen…
Owen was born on April 30, 2012. Much to my surprise and delight he was a healthy newborn who came home with me three days later. An ultrasound during my pregnancy suggested he may have problems with his bowel, but this had clearly resolved before birth. When he was eight days old he had an echocardiogram, which told us he had minor heart defects that would likely resolve with time and would not require any interventions. All of my fears and anticipation of health problems were diminished by this beautiful healthy baby. Owen was just like any other newborn that needed only to be loved, kept warm and clean, and fed. With time, some of his challenges became more apparent – he had trouble hearing because of his small and blocked tubes. This was soon remedied by a minor surgical procedure. He has low muscle tone and takes longer to meet developmental milestones, but every day he makes progress and he has been receiving intensive physiotherapy since he was six months old.
Owen is now 16 months old; he is not like my other children were at this age, he is unique and wonderful in his own way. We are so proud of him and each new accomplishment he masters. Owen’s life is enriched by the love of his older brothers, DVMS casa students Max and Ruaridh, by his extended family, friends, and the loving community around him.
The Story of Julia…
In a few days we will be celebrating Julia’s first birthday. All of our children’s birthdays are special, but I must confess that this one feels a little extra special. Julia has had more than her fair share of medical challenges in her first year of life, some related to Down syndrome and some others unrelated. Throughout all of these challenges, Julia continues to inspire us with her strength and determination and is finishing her first year on a high note.
The past year has been one of great growth for Julia and the rest of our family. The support we have received from the DVMS community has been wonderful, and we are so thankful. The experiences we’ve all shared – Julia, her sister and brothers, my husband and me – have stretched us all to be better people and made us a closer, stronger family. Julia is the most wonderful and precious baby we can imagine and we’re excited about what her future holds. We hope you’ll all get to see her sparkly eyes and infectious smile soon!
The Importance of Community to Our Children and Us
A sense of community and belonging brings with it great strength and opportunity. All of us are part of many (and sometimes overlapping) communities in the different parts of our lives – our families, our neighborhoods, our work, our friends, our children’s schools, and/or our spiritual beliefs (this list could go on). Julia and Owen introduced us to a new community this year – one which embraces diversity and values everyone equally regardless of ability. Our families have joined the Down Syndrome Association of Hamilton (DSAH). DSAH is a not-for-profit organization run exclusively by volunteers whose lives have been touched by Down syndrome. It’s mission is to celebrate the lives and accomplishments of people with Down syndrome, to advocate for better services and opportunities for people with Down syndrome, and to educate both the community as to their potential, and those with Down syndrome themselves to be empowered to take their place as fully engaged members of the community. DSAH provides information and supports its membership in the Hamilton area by offering programing, holding educational events, organizing social opportunities for families to connect, and by subsidizing families and individuals to attend conferences and specialized therapeutic services.
Both of us have been active members of a committee organizing an exciting fundraiser in support of DSAH to take place on Sunday, September 29, 2013, at Bayfront Park in Hamilton – the DSAH 1st Annual Buddy Walk. The Buddy Walk was first established in 1995 by the National Down Syndrome Society (USA). The Canadian Down Syndrome Society pays copyright for the use of “Buddy Walk” in Canada. The Buddy Walk aims to promote acceptance and inclusion of people with Down syndrome in their local communities. By organizing a Buddy Walk in Hamilton, we are hoping to increase the level of awareness, understanding, and acceptance for Down syndrome in our community.
On behalf of Owen and Julia and their siblings, we are asking the DVMS community to get involved and support our Buddy Walk – by learning about and talking about Down syndrome; by thinking about what social acceptance and inclusion really means to you and your family; by spreading the word about our event; by volunteering at our event; by participating in the walk and/or supporting Team Julia and Team Owen. You can learn more about it by going to our website – www.hamiltonbuddywalk.ca – where you can register for the walk or register as a volunteer and/or pledge support to Team Julia and/or Team Owen.
Jennifer, Danielle, and our families.