Yesterday was an exhausting day. We’ve been doing checkups with David’s doctors at UCLA since he aspirated under anesthesia in March. Ever since they keep pushing a G-tube and keep telling us how we’re putting his life at risk. Yesterday the doctor recommended palliative care and said we may even need to discuss hospice! To be clear—David is NOT dying. He’s doing great!
In 19 years of doctor visits, it still blows my mind how fragmented their recommendations are sometimes. It’s like the old saying, “When all you have is a hammer, everything becomes a nail.” When all you have is 7 minutes for patients (recommended time for a doctor to be in a room with a patient!), a specialty, and the last doctor’s notes, it doesn’t leave much room for a holistic picture. It doesn’t leave time to consider the impact of words on families.
I don’t think most people realize the burdens parents of special needs children bear. Every night I wonder if it’s the last time I’ll put David to bed. Every cough and sneeze threatens to become the pneumonia that will finally take him. On the other side of the equation, there are questions of how to care for an adult with around-the-clock needs over the next 5, 10, 20, or more years. There are the daily considerations of which activities your child can participate in and how that impacts every member of the family.
I don’t have any deep conclusions here. I’m grateful for the overall amazing care David gets and the many people who love him and our family well. This is just a heavy week. Sometimes it’s best to give voice to hard things.
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Our daughter is 17 (with a rare genetic disorder) and this really rang true to me today. Thank you for sharing your thoughts and experiences!
Thank you for sharing, and being real. Yes, we’re in a place that most don’t understand. I have a son with Trisomy 8, being a special needs parent is hard, yet rewarding. Your David always looks so happy!
God bless your family. It must be very difficult and it is important to discuss hard things. I am praying for your son David right now. Our family has enjoyed your family’s meaningful jewelry for years! Keep the faith. Much love and support.