Hope, Peace, Joy: A letter from a grateful Latham family member
December 3, 2019
On this Giving Tuesday, we’re sharing the personal story of a Latham family member who writes that Latham Centers has given her sister “a safe, supported, independent life and in doing so, has given her family peace of mind.” Below is an excerpt from her letter – the full Holiday Appeal letter and a link to donate are available here.
Dear Latham Friend,
My wish is that in sharing my family’s journey to Latham Centers, others will find hope.
When my sister Stephanie was born, she spent seven weeks in intensive care. Like many babies born with Prader-Willi syndrome (PWS), she had poor muscle tone and a weak sucking reflex which led to failure to thrive. When she was just days old, an allergic reaction to medication caused Steph’s heart to stop beating. My mother ran screaming down the halls of the hospital and grabbed a passing nurse who rushed to save her life.
My parents were consumed with worry. My younger sister Lindsay and I were confused and frightened – we were eight and ten years-old. Like any family welcoming a new baby, we were all instantly in love, but her arrival ushered in a “new normal” for our family. We were forever changed.
Growing up, Steph loved to sing and dance. In elementary school she took horseback riding lessons and participated in Girl Scouts. We all delighted in her interests and achievements because we had been told that she would never be or do much of anything. My mom was fierce in her desire to help Steph. She battled insurance companies and spent her days traveling to OT, PT, speech therapy and to meet with specialists.
As Steph grew older things became more challenging, both for her and for our family. In high school, she was moved to a special ed class and separated from her classmates. While her peers were driving and dating, Steph had multiple stays at Children’s Hospital to manage her debilitating back pain caused by scoliosis, and psychiatric hospitals to manage her anxiety and depression. She grew isolated and frustrated, and her behavior escalated. She had destructive outbursts. Something as minor as getting a slightly smaller piece of pizza could send her into a rage. My sister and I tried our best to help; my dad always said that Steph had “three mothers”.
I think that we all chose to focus on the kernel of hope that allowed us to believe that Steph could be helped at Latham. Hope coupled with faith. We believed that Latham could provide her with the structure and the tools she needed to have the life she deserved, in a safe and nurturing program.
Being a parent is hard, but when you’re raising a child with special needs, the level of care and stress is not just higher—it shifts the foundations of families and adds unimaginable complexities for everyone involved. So much of our family’s time, energy, and emotion was spent trying to help Steph and keep her safe – but we just didn’t have the tools. We were in crisis.
Placing a family member in residential treatment is never simple. I know that my parents were overwhelmed with fear and guilt. We had all spent 17 years working in overdrive, fueled by our love and dedication for Steph, trying to create a path to a safe and happy future for her. We chose Latham because it was a leader in the treatment of PWS… Steph entered Latham School in 2008 and graduated to the Adult Residential Program in 2012. Latham changed Steph’s life in ways we never could have imagined.
Your gift helps a mother to know that her child is safe, or a father to share photos of his Special Olympian. It helps a family to have two working parents contributing instead of one full-time caregiver. It helps siblings to forge a new relationship with their brother or sister that is full of funny stories and memories rather than living from crisis to crisis. And, it allows aging parents the comfort and peace of knowing that their adult child will be cared for when they are gone.
