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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question.

鈥淗ow鈥檚 Thomas doing?鈥

It鈥檚 double-edged sword. It鈥檚 almost impossible for me to answer that question truthfully.

If Thomas is having a great run and has been through a stretch of no bleeding, the question strikes fear in me. I鈥檓 not a superstitious person, but my answer is usually a quick, 鈥淗e鈥檚 good. What鈥檚 up with you?鈥 because the good fortune he may have been experiencing has likely been jinxed with the asking and answering of that question. Many years ago when Thomas was younger, we went a long period of time without visiting the HTC. Our beloved nurse called to check on us and I gave a glowing report on how well he had been doing. The next day we were in the emergency room on our way to being admitted for a nasty, spontaneous bleed. I half-jokingly, half-seriously asked her to never call again. When the going is good, I don鈥檛 like to dwell on it, because I simply don鈥檛 know how long the good is going to last, and I certainly don鈥檛 want to jeopardize the length of good times.

Thomas_wheelchairBut when Thomas is not doing well, when his inhibitor is creeping higher, and he is bleeding often, the question is even harder to answer. I鈥檓 not sure people who ask really want to know the truth. If I answer it honestly and say that he鈥檚 in a great deal of pain, or that he is bored out of his mind, or that he鈥檚 missed two straight weeks of school and not a single one of his teachers has called to check on him, I鈥檓 met with pity or an uneasiness of how to respond. Most of the time, if I answer beyond, 鈥淗e鈥檚 okay,鈥 I can feel the other person鈥檚 discomfort. 鈥淗e鈥檚 okay鈥 is an okay way, a safe way, to answer.

I understand others鈥 response, especially from someone who doesn鈥檛 have a love one with a bleeding disorder, because they don鈥檛 understand the unpredictability of this life. But when I answer, 鈥淗e鈥檚 okay,鈥 the truth is, he鈥檚 likely not okay. It鈥檚 not okay that he鈥檒l probably have to repeat 7th grade this year after a school year full of bleeds. It鈥檚 not okay that two years ago, at 10 years old, he became dependent on narcotic pain medication. It鈥檚 not okay that he developed an inhibitor that we鈥檝e never been able to eradicate. It鈥檚 not okay that this little boy has had to endure more pain, more discomfort, and more heartbreak in twelve years than most people have to experience in a lifetime. That鈥檚 not okay.

When I respond, 鈥淗e鈥檚 okay,鈥 what I really mean is we are surviving. We are surviving by living in the moment and tackling one day (and sometimes one hour) at a time. We excel at that 鈥 we are excellent crisis managers and coordinating last minute schedule changes when hemophilia strikes.

When we were hit with four bleeds in two days as Bleeding Disorders Awareness month rolled around this year, I decided to answer 鈥淗ow鈥檚 Thomas doing?鈥 differently from now on: 鈥淗e鈥檚 had a really tough go lately.鈥 There鈥檚 no sugarcoating it, no downplaying our reality.

To be a good advocate, I have to be a truthful advocate, and it鈥檚 high time I share that truth: hemophilia is hard. Sure, I have this amazing kid who is stronger than most people will ever have to be, but it鈥檚 not okay what he鈥檚 had to go through to gain that strength, and that is a much as a double-edged sword as 鈥淗ow鈥檚 Thomas doing.鈥

_________________________

Sonji lives with her husband, Nathan, and three children Nora (14), Thomas, (12), & Natalie (10), in Colorado.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 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.

 

 

 

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