We had a tough winter. We spent more time than ever before cuddled up in an ER room watching whatever Disney movie was on the in-hospital. Doctors and nurses would rush in and out. We ate fast food and hospital food.. We coped. Because, this is our life. This is our reality.
We have a routine when we go to the ER. We always stop at a gas station to grab some pop and candy for my husband and make a Starbucks run for me, regardless of the time of day, because we all know no one gets any sleep in an ER.
We know the drill. We have become so accustomed that it fails to register that this is not everyone’s normal. We realized that everyone doesn’t know what food is “good food” from the cafeteria, or that we have a small bag of supplies ready to go so we aren’t throwing things haphazardly into a bag halfway out the door.
But I was recently struck by how a friend, one outside of the world of ERs and hemophilia, saw our life. We were at the ER when she sent me a text message asking if she could bring us a meal and if she could put together a meal train for the next few days. I read the text and showed it to my husband with an almost quizzical response, “Why do we need a meal train? I didn’t just have a baby.” I didn’t respond right away. I waited and thought about it. Eventually, I kindly thanked her and accepted the meal. I explained that this happens all the time and I do not want her to feel burdened by us or that she needed to do this every time we made a trip to the ER. I told her that hospitals, quite possibly, feed us more often than I fed my family.
In spite of my response, she told me how many people wanted to help. In that moment, I learned that just because we hemo moms appear to “have it all together” does not mean we do. The meals that we would have eaten more than likely would have been quick and most likely unhealthy. She gave my family the gift of good meals and me a moment to just breathe. *
I learned that when you take a moment to look over your situation you realize how exhausted you have truly are. Being a mom is hard, but after the ER visits, the doctor visits, paying medical bills, fighting the insurance company, ordering factor (what seems like every day because we run out so quickly), and doing the “normal” kid stuff you are spent.
I learned that you must have good people in your corner! You have to have people like my friend who just said, “I am going to do it anyway.” I know that most people do not understand that the ER is like a second home to us – that we know the nurses and doctors and, although it is terrifying to experience, we walk that road anyway. When we say we are taking our kid to the ER often times people assume that your child is dying. For us, every time could be life threatening, but I understand that it is a whole different ballgame for your average family making their way to the ER. The ER is often times a place of great unknown, and for everyone’s sake try and keep it that way, but hemo moms know the ER as home away from home. You also need to have other bleeding disorder parents who understand in your corner. And if possible, you need to have other bleeding disorder kids be friends with your own little ones. To show off the bruises, the ports, needle sticks, or just to say, “Hey, I have hemophilia too!”
I recognized that most of my days are spent taking care of others, but that I never really let anyone take care of me. And I certainly never ask any one to take care of me, because I have been so wrapped up in being the one who can handle it all, juggling a million different balls and never letting one slip. But it was so refreshing to let someone else care for us, for me, for just a moment. For someone else to see that this hard stuff and allowing my friends to give a little of themselves went a long way in helping to restore my tired self.
And even though we will spend countless more days in doctors’ offices and the ER, I need to remember that other people are willing to walk alongside us. Even if they do not comprehend the everyday realities, I need to let other people—especially those who understand the life of bleeding disorders—to be strong for me in my times of great weakness.
Find these people, hold onto those people, and remember that they want to help. It may mean a world of difference to you and your family.
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.