Being a Parent to a Child With a Rare Disease

Being a parent to a child with a rare disease is difficult yet beautiful. It is exhausting yet amazing. It is what drains me physically, mentally, and emotionally while also fills me up with each accomplishment. It is being able to witness God’s miracles on a very regular basis in such small ways, yet being so confused and angry about how God can allow these difficult things to happen to such an innocent child. It’s research, research, research. Always looking for the best specialists, best therapists, and best strategies to help my child reach their full potential. It’s learning a new language along with my child, and teaching them how to communicate in a language that few people know. It’s becoming a nurse, physical therapist, speech therapist, and occupational therapist for my child on top of trying to just be mom. It means days filled with doctors appointments and therapies. It means traveling out of state every few months so that we can see the doctors who specialize in my child’s syndrome. It’s IEP meetings and looking for the school that will fit all of my child’s complex needs, even though he’s not even school age yet. It’s endless amounts of time talking on the phone from ordering medical supplies, scheduling appointments, and following up with many case managers. It’s trying to find the balance of allowing my child to be a kid and play, while also trying to make sure we get all of his therapies in each day. It’s when handing your child over to the hands of surgeons becomes a normal occurrence, but it does not ever get any easier. It’s always hoping for the best, but also mentally preparing for disappointing news. It’s giving meds, breathing treatments, tube feeds, suction, repeat. It’s changing trachs and g-tubes, and a daily shot to ensure my child will adequately grow. It’s learning medical terms and medical procedures, and feeling like you should have earned a medical degree by all you have learned through your child’s diagnosis and care. Being a parent to a child with a rare disease changes you. It breaks you at your core, but gives you so much strength. This is just a small snapshot of what our life looks like. Other families who have been impacted by rare diseases may look a little different. Children with rare diseases are true warriors, and I am so proud to be the mother to my very own hero.