I worry when he’s late coming home and I haven’t heard from him in a while. I worry when I can’t get a hold of him on the phone for hours. I worry when he boards a plane for a trip. I worry when we do any physical activity where there’s a possibility he might get hurt. I worry when he bumps his head or has a headache. I worry when he’s walking with even the slightest limp. I do a lot of worrying.
Reading this, you might think I’m a mom, but I’m not. I’m the wife of a hemophiliac. He is the love of my life, my best friend, my soul mate and I can’t imagine life without him. He brings immense joy to my life everyday and can make me laugh at the drop of a hat. My husband is the best husband I could ever dream of and I wouldn’t trade him for the world.
That being said, marriage is sometimes hard and the “perfect” relationship is a myth. Relationships aren’t ever actually perfect. The truly best relationships are the honest ones where both people never give up, and the wife of a hemo never gives up.
Being married to someone with a disability can at times be even harder than your typical relationship, especially when it’s a disability that the average person cannot see or may have never heard of. Explaining to others the short notice for canceled plans due to a bleed or educating them on how my husband’s medicine isn’t just taken like a pill can be tiring, and not many people understand, but that’s okay. We have a community here that does.
There’s a reason why my husband calls his hemo friends, especially his blood brothers, his “hemohana” – a term he coined by combining “hemo” with “ohana,” the Hawaiian word for family. They’re all our family, our “hemohana” because no one is forgotten, no one gets left behind. Having that kind of support and quiet empathy during those tough times when all you want is a shoulder to cry on is a relief we all can understand, “hemo” and “clotter” alike.
It’s safe to say I have a love/hate relationship with hemophilia itself. I hate the pain my husband deals with on a daily basis. I hate that it takes him away away from activities he’d love to participate in but can’t due to the high risk of a bleed or a bleed that he’s currently recovering from. I hate my frustration at explaining why he can’t just take more Vitamin K and be cured.
But even with the negatives, there are always positives, and in this case, there are quite a few. I love our hemohana and the wonderful people I’ve met through this community, who astound me with their strength and wisdom. I love the fact that because of hemophilia and what it has brought to my husband’s life, it has made him who he is today. The loss, sorrow and joys of his experiences living with hemophilia have made him into an amazing man whom I adore with all my heart. I am proud to be his wife and am honored to continue to grow in this life with him by my side.
A great quote from an unknown author said, “A great marriage doesn’t happen because of the love you had in the beginning, but how well you continue building love until the end.” Every day is a blessing, good or bad, that I may have the pleasure of knowing and loving my hemophiliac. I love my hemo-honey and I couldn’t ever imagine my life without him. Or without hemophilia.
Stephaine and her husband Jeff lives in Oregon. [/glossary_exclude]