By Desiree Clark
I could say HHT burst into our lives like a comet slamming into the earth, but in our case it snuck in little by little. It was kind of like living on a fault line. A tiny tremor here, a bigger one there, and then BOOM!
My name is Desiree Clark and I am 49 years old. I am married to my high school sweetheart, a family home daycare provider and have four children. Each of my children have very distinct personalities, with a little bit of each other wrapped inside.
JB is a former Marine with a great laugh and immediately attracts the attention of others with his quick wit. Al, a.k.a the gentle giant, is a fun loving young man, loyal to friends and would go out of his way to help anyone. Jake is our charmer. He’s shy, but can light up a room with his giggle and his kindness. Our baby girl, Shannon, is a real go-getter full of compassion.
We hadn’t heard of Hereditary Hemorrhagic Telangiectasia until November 2014 when three of my four children were diagnosed. But one of my children had been suffering from it since he was born. His was my easiest pregnancy, with labor and delivery as calm as one can be, and at 9 pounds 2 ounces Jake melted our hearts.
But something was wrong. The doctor wasn’t as concerned as we were about the left side of his chest being flatter than the right. He had just been born so we thought perhaps his chest hadn’t “filled out” yet, like the cone shaped head he was sporting, but he was also very pale. I suppose coming from Irish and Norwegian heritage this should have been expected, however, this was just different. It was the beginning of our walk with HHT and all the complications that go with it.
I will tell you, now, that I am a religious person, so prayer is a big part of my life. I blog not to preach to you, but to share my journey of medical emergencies, child rearing, relationships and faith. My blogs come from the lens of a healthy woman who has watched her family struggle on and off to stay alive. They are from a mother who has begged God to take this disease from her children and place it on her. They are from a wife who hides her fears behind smiles until the next emergency comes. And it always comes.
When the official diagnosis was entered into the hospital computers I felt like the fault line had widened quite a bit more, and everything that was slowly shifting underneath cracked open, leaving me with one foot on either side of the chasm. After genetic testing, the pieces of the past gathered together by retrospect made sense. But when the “ah-ha” moment hit, the fear was not released.
As we approach year 17 of nosebleeds, migraine headaches, CT scans, MRI’s, bubble echo tests, coil embolizations, Inferior Vena Cava filters and blood draws, I’d like to ask if I may hold your “cyber” hand. Reading a medical blog or posting your experiences while they are happening to sites like this can be surprisingly comforting while you are waiting in a hospital emergency room.
We are all now a part of the Cure HHT family with the common goal of contributing to the cure that is sure to be found. I hope my journey can help you on your path to health and with God’s blessing we will link arms and walk together.