In just 14 months, our daughter has accumulated 12 specialty doctors, 3 therapy interventionist, 24 active medical conditions, 3 surgeries (one being open heart), 8 hospital admissions, 34 illnesses, and both cognitive and developmental delays.
My day is consumed with medical appointments and/or therapies, my nights are consumed with research and failed attempts at maintaining our home.
Every appointment leads to three more, plus a new doctor. Every doctor is puzzled
and sends for more blood-work – just for it to continue to show abnormalities. The doctor appointments, the vital checks, the hospital visits, the blood-work, the imaging – it never ends.
We press for answers, we talk to family, friends and even strangers – we feel isolated, judged and often question our own intuition. Every 2.5 – 3 weeks is the gap, the gap between her sick days, the gap between her “looking so good” to not eating, to her going from diarrhea to constipation (and vice versa), to her developing fevers, UTI’s, infections and only wanting to rest.
Therefore “She looks so good, though!” is something I quite literally cannot stand to hear again.
We recently learned she may have an autoimmune disorder that’s causing her body to attack itself, which is the reason for the on-going illnesses. As a mother, I can’t handle and don’t want another diagnosis – but as a mother to a child with special needs and medical complexities – I won’t stop until I have a solid treatment plan for whatever diagnosis it is they throw at her next. Will her next appointment give us the answers we so desperately need? Will her next blood draw come back normal, for once? Will we really be able to make it a whole week without any medical appointments?
This is unlikely, but we will continue to research – we will continue to press for answers and solutions, we will never give up. A mom’s job is the hardest job I’ve ever signed up for, BUT – I wouldn’t change her for the world.