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Raising a special needs child is challenging. It is physically tiring and emotionally draining. But it is incredibly rewarding, too. Some days leave me feeling like I know nothing and can’t do anything right, while others are positive and uplifting. This is the roller coaster that parents of special needs…
For a parent, the worst thought in the world is losing a child. The love a parent has for his or her child is unceasing. Bringing a human being into the world, then raising and loving them only to lose them is unfathomable. Yet, parents of children with terminal illnesses…
My 24-year-old daughter, Abby, has a terminal disease called Sanfilippo syndrome. It is likened to childhood Alzheimer’s. Children with this disease gradually lose all speech, motor, and cognitive abilities until their bodies shut down completely. This not only strips away Abby’s independence, awareness, and ability to connect to others, but…
The role of caregiver is a sacred responsibility. Caring for someone whose well-being rests solely upon you is an incredibly meaningful job. And it is a necessity, as there will always be a population that needs caregivers. Almost everyone at some stage in their lives requires someone to care for…
Loss is a theme that persistently has occupied my thoughts lately, not only because of current events in the world, but also because of my personal life. At 24, my oldest daughter, Abby, has Sanfilippo syndrome, a terminal disease that slowly is taking her from me. I’m losing her,…
Do you ever feel like you are walking through life with no emotion? Getting up each day, going through your routine, but with little emotion attached to any part of the day? For some reason, that is my current situation. There are many reasons for me to be emotional each…
My 74-year-old mom unexpectedly passed away two weeks ago. It is still surreal to even type that statement. She was such an important presence in my life and my family’s life. My daughter Abby, who has Sanfilippo syndrome, had a very special relationship with her. My mom kept Abby…
There’s nothing like a global pandemic to provide some perspective. Being forced to stay home, practice social distancing, and work less can alter your point of view. It makes you reflect on your life and your relationships — especially those within your own family. One realization that has evolved from…
My daughter Abby has Sanfilippo syndrome, a rare and terminal disease with no cure. Every year my husband, Jeff, my other daughter Emily, and I host a 5K walk/run in our hometown of Houston, Texas. We want to do what we can to increase awareness of Sanfilippo and raise…
My daughter Abby has a terminal illness called Sanfilippo syndrome. This condition has stolen so much of Abby from our family. Witnessing her decline is extremely hard. It is difficult now to remember what Abby was like before her disease progression. She used to talk in complete sentences. She…
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