March: In like a lion and out like a lamb. That’s how the saying goes. And oh how it rings true for my family. It is Lent, of course, a time for the faithful to pray, sacrifice and fast. And it is in our prayerful reflections and daily acts that we prepare ourselves for Easter and new life.
March is also Trisomy Awareness Month. For my family this has become a time to celebrate the life of our daughter, Bella. Bella was born almost five years ago with Trisomy 18, a severe genetic condition that I believe makes every day with her a gift from God. Children with Trisomy 18 have an extra chromosome, are born underweight and suffer a number of health issues that lead in most cases to a shortened life. It is true that 90 percent of babies with Trisomy 18 die at or before birth, many by abortion. Only one in 10 that survive birth see their first birthday. Despite this painful reality, Bella has enriched our lives beyond measure, and she is a happy child surrounded by the love and comforts of her family. We’ve been truly blessed, but we do not take for granted the resources and access to medical support and pro-life disability groups we have had in caring for Bella.
Not every child born with Trisomy 18, or any physical or mental disability for that matter, of course, has the means or the access to the same support. This is true across the United States, but it’s especially true in developing countries where many of these children live in poverty. This March, to observe Trisomy Awareness Month, we are thinking about those children and the great organizations that are working tirelessly to support them. And we hope you join us in recognizing them for the great work they do.
Karen and I believe, of course, that every life is sacred and every child is born with the God-given right to live a rich and rewarding life. And this is just as true for children with disabilities. When these children are born into lower income families, the challenges they face can often be quite steep. And while public assistance may ease the situation, we can’t rely on the government alone to help these families and these children. We must do more. We must support communities, organizations and churches that can provide specific support to these families.
I’d like to mention a few examples of the organizations that are doing this important work. Building awareness will help these children, and if you are able to support them this Easter season, please do.
Prenatal Partners for Life provides a community where parents, medical professionals and clergy can connect with each other and exchange information. It also include resources such as adoption agencies that have clients waiting to adopt special needs children. For other families with children born with Trisomy, there is SOFT, the Support Organization for Trisomy. SOFT is also a community of families affected by Trisomy, each dedicated to providing support for each other throughout the child’s life. Jill’s House in McLean, Va., does amazing work providing support and some relief for challenges and stresses families that have special needs children face. These families are often stretched financially and emotionally, and Jill’s House is there to provide some help. And finally, the Faith and Family Foundation at Wheatland Farm in Virginia provides a host of activities and support services for special needs children and their families.
All of these organizations do great work – but they aren’t the only ones. The Special Olympics, led by the Kennedy and Shriver families, has worked so hard for decades. And across the country, countless nonprofits and churches provide support on a daily basis to help meet the special needs children and their families so badly need. These are worthy organizations, providing countless hours of time and much needed support.
As I’ve written before, our Bella has been a blessing. She has brought us so much joy and happiness. And despite her special needs, she too lives a purposeful and rich life. It’s important for us to continually affirm life, and our belief in the fundamental right to life, by supporting those who work to ensure all families with special needs children are able to provide for them. It’s not easy, we know, and in fact it’s among the biggest challenges a parent can face. But they are not alone. Join me in being there for them.
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