I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into the mix, and there you have it: the crazy life I’ve been living for the past five months. Let’s do away with the inspirational mumbo-jumbo that goes, “Everything will be OK, just have faith!” Instead, let’s…
Columns
Look Ma, No Port!
My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s”…
I get many opportunities to travel across the country to speak with families affected by bleeding disorders. Everywhere I go, I see familiar faces — faces that bring me great joy. There are lots of hugs, and each smile warms my heart. My talks change from event to…
I Will Not Baby My Husband
I will not baby my husband. I will not carry all the weight on my shoulders just because he is “sick.” His disability does not mean that he is brittle. He has the capacity to grow, develop, and become more resilient over time. But that is something he won’t be able…
What About Hemophilia?
Mr. Man started coughing on Friday and grew much worse by Saturday. My boy struggled with flu-like symptoms all weekend. We thought that by giving him allergy meds and cough suppressants, he would recover and be well for school on Monday. No such luck. The medicines wouldn’t work,…
Let me tell you one of my secrets: I have anxiety. I don’t mean the kind of anxiety you’d feel if a package hadn’t arrived days past a delivery date. Or if you were lost in an unfamiliar place at night trying to find your way home. That kind of…
Part three in a series. Read parts one and two. With the invention of the map created by my son’s medical team, my wife, and me, the most challenging year that we ever experienced ended. My son did not have another absence while in elementary school due…
It’s not easy to live with hemophilia in the Philippines. When we hear stories of hemophilia care around the world, it’s hard not to feel envious of hemophiliacs outside of our country who receive proper healthcare and can live a normal life. In this column, I will tackle the issue…
My eldest son, Julian, is 22. He is studying music at college. It’s his passion, and as I have a music education degree and my husband has a music degree, his course choice did not come as a surprise. With our recent move, Julian changed schools, and his…
Part two in a series. Read part one. My family was taught many lessons in the year that everything appeared to fall apart and hemophilia became a nightmare in our lives. The most significant lesson was to cherish every moment. Sometimes in life’s most significant challenges,…
Recent Posts
- A hospital vending machine brought me back to ER visits with my son
- FX activator may help with bleeding control in hemophilia A and B: Trials
- Paying attention to how we treat children with an invisible illness
- Celebrating hemophilia progress while remembering our community’s past
- Single infusion of Roctavian linked to fewer bleeds in hemophilia A
