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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after a conversation regarding my son’s bleeding disorder, what that means, and goes something like, “I don’t know how you do it…”

My most typical thought is to smile and remain silent. This is the safest response because the floodgates of my emotions may just break through. The sweet, innocent person trying to say something they think helpful, will be loaded down with the pain and exhaustion I am fighting against if I say more. I smile and say nothing, but often times I want to say any or all of the following:

  • I am exhausted. So exhausted that sometimes I cannot think straight;
  • I feel suspended between fear of the unknown and fear of the very real things.  Scary things involving medical bills I could never pay without health insurance or possible complications that instill such fear I sometimes am overwhelmed by them;
  • I cry more often I would like to admit; 
  • Most of the time all of it is more than I can handle. I wasn’t designed to take all of this on;
  • I hate that I had to learn how to navigate needles, fevers, medical terminology or just the medical industry as a whole;
  • I lay awake at night thinking about how hard he hit his shoulder when he rounded the corner or how closely I should be watching that nasty looking bruise on his shin? Where did that bruise come from anyway? Was I not watching him closely enough?;
  • Or that you may think I have it all together and that the picture looks pretty great, but I have made it a part of my life to make it seem like that. So that people, such as you, don’t see how hard this is. That it has taken a toll on my marriage and had made me question almost everything you could think of.

emily_supermomBut sometimes I want to ask the question back.. I want to say, “If you were in my position, if you were blessed with a big, beautiful baby and then a voice on a telephone made your world crash down around you, how would you handle it? Do you think you would have all the answers right away? Because I didn’t, and I still don’t. Maybe you think you’d walk this road better than me, because we all have different strengthens and struggles.”

But I really want to tell people that I feel like this comment somehow places me up on some sort of pedestal. Like I am somehow stronger or better than them. I am not. I am not a supermom. I am just a mom. One that makes mistakes. One that wishes she did this or that better. I was faced with an uncertain future and have been abundantly blessed. I would never have imagined that I could access a port-a-cath, that I would be signing papers for them to do brain surgery on my three-day old, or that we would have to fight tooth and nail to beat an inhibitor.

I want to tell people, “You do know how I do it, because you are a mom and that is what we do. No matter the circumstances, we take care of our kids. “

Emily Boyer lives with her husband, Geoff, and 4-year-old son, Logan, and infant son, Ryan, in Minnesota.


*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.

 

 

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