When you think of the lottery and hear the odds are 1 in 5000… and then your number is chosen? Instantly you feel like you are sitting on top of the world. But what happens when the 1 in 5000 in your world becomes 4 out of 5 of your children being diagnosed with HHT? Upon the mention of that news, you don’t exactly feel like a winner. And although with most diseases they say early detection is best, this breaking news didn’t seem to put us at ease as we prepared for preventative measures and a boat load of testing.
MRI’s, bubble echos and bloodwork — with the age range of the kids from 1 to 16 years old… it has surely not been a walk in the park. Trying to calm the nerves of my teenager as we prepare for yet another MRI while trying to help her accept something I have no say so over… or mentally preparing to have my 4-year-old sedated in order to get her MRI due to her age.
While I am grateful their symptoms have not been severe, I can’t help but cringe with an overload of anxiety as I witness what both my husband and my mother-in-law have gone through thus far battling this disease. Nosebleeds, GI bleeding, low iron, and reduced quality of life are not possibilities you want for your children. You want them to have friends and play sports, take dance class and just live. But when playing sports turns into a nosebleed on the court, and now you’re benched to wait for it to stop in a time frame that could last up to 30 minutes… but there’s only 8 minutes left in the quarter… how do you process that?
As an adult it’s hard enough to accept what goes on with our bodies as menopause and other age-related things ensue. However, it seems different in a way because you anticipate their arrival to a degree. But this? This was not on the itinerary. Yet, you learn to go with the flow…literally.
As we settle into our new normal, we are still optimistic. With all the advancements in technology and cutting-edge research, we are praying that a cure can be found soon so that our children can have less to worry about and more to live for.