Infusing Love: How Do You Measure

“525,600 minutes…525,000 moments so dear.”  Just like the song from the musical “Rent,” those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can’t help but look back at 2018 with mixed emotions. For our family, it’s been a bit of challenging year.
Being a hemophilia mom provides you with the innate ability to watch a fall, bump, hit, or knock on your child and immediately know the outcome.  The “yep, that’s going to leave a mark or, I definitely need to dose for that!” intuition is a very real thing.  As a hemophilia mom, you almost have, what a dear friend refers to as, “Mommy Medical Degree” or MMD.  In May, my father-in-law was diagnosed with a vicious terminal cancer.  I will always remember where I was and what I was doing when I got the call.  He had been having some health issues a few months before. He had countless lab draws and scans that my “MMD” couldn’t diagnose. I tried desperately to put the pieces together. He was finally diagnosed with mixed hepatocellular carcinoma and cholangiocarcinoma.  I became an expert in being able to say the mouthful diagnosis.
In order to receive treatment, my father-in-law had a port put in.  My 7-year-old son, Nicholas, knows all about ports and tried to assure his grandfather that pokes through a port didn’t hurt too much.  He showed Pappy the special numbing cream and “stickers” we used when Nicholas was much younger. My father-in-law had a few rounds of treatment but unfortunately, he lost his battle in August. During that time of unbearable grief, my father who has severe hemophilia, was told he needed open heart surgery asap. Again, my MMD was put to the test. We have spent more than enough time in hospitals and funeral homes in 2018 as we’ve had other friends and loved ones pass this year.
Just like a roller coaster this year has come up with some incredible ups. We bought a new home for our family that provides some much-needed space.  We have adopted an adorable lab hound mix that has added another layer of activity yet joy to our bustling family.  But by far the biggest “up” was my father’s successful open-heart surgery and learning that our daughter beat those 50% odds and is not a hemophilia carrier!
2018 has been 525,600 minutes of ups and downs.  It’s been a year we will never forget.  While we are looking forward to 2019 and so ready for the 2018 roller coaster to end, we keep reminding ourselves that this time is so valuable.  Each moment of the year is precious. While we never know what the next year is going to bring, we are thankful for the joyful moments we have had.  We look into 2019 with the hope of a healthy happy year.  I want to wish all of my bleeding disorders family a happy, healthy and bleed-free 2019!
Carrie lives with her husband Mark, and 8-year-old son, Nicholas, and 4-year-old daughter, Aleesia, in Maryland.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.