Before you read this post, I need to give you a context so you aren’t distracted from the real message. My husband and daughters all have a bleeding disorder called Von Willebrand Disease and I have described what it is here so if you, or someone you know hasn’t heard of it, or maybe even has it, you can get information about it.
But what I most want you to focus on has to do with my issues of dealing with fear (especially my fears as a parent). And whether I have fear about the ramifications of living with this disease or general fear from the scary world around me, the issue is the same. I can’t live in fear but have to trust that God is in control of all things.
So with that in mind, I’d like to share with you an excerpt (I happened to write) from a new book called, “100 Questions and Answers about Von Willebrand Disease” by Dr. Andra James. Von Willebrand Disease (VWD) is the most common bleeding disorder found in females, although unlike hemophilia, which is only in males, VWD can be found in males, too.
Quite simply, the Von Willebrand factor is a protein that is essential for normal blood clotting. It acts like a glue to adhere platelets to the site of an injury. If you don’t have enough of this protein, or the protein is defective, you have VWD.
If you have a daughter, girlfriend, or you have bleeding issues (symptoms include easy bruising, frequent or hard to stop nosebleeds, gum bleeds after dental procedures, bleeding after surgery, and heavy periods) getting checked for VWD is a good thing to do. Most of the time, VWD is just a nuisance but on occasion it can have serious health implications.
If you are interested in learning more about VWD I would highly recommend Dr. James’ book. She, herself, has mild VWD and is an OBGYN who specializes in bleeding disorders in women. She’s written a simple to understand book and anyone with these types of symptoms should read it. I am honored she has included an article I wrote as answer to question #99. Is a medical identification bracelet necessary?
My husband, Steve, who had Type 2B VWD, has always worn a medic alert necklace, as did his dad, since their diagnoses. So when the girls got diagnosed [as children], I ordered medic alert bracelets and put them on their little ankles.
Of course the primary reason for their medic alerts was so their information would be on file in case of an emergency. However, the secondary reason was so I didn’t get turned in for child abuse! They always were bruised and I had more than one occasion where I was questioned because of their bruising. I do have to say, I never took offense at that – I appreciated that people, even strangers, were watching out for children’s welfare and safety.
Now fast forward. (I have permission to share this.) Steph got to be a teenager and she decided she didn’t want to wear her medic alert anymore. She hated people asking her what it was for. She didn’t like being different.
We are very close and one rainy afternoon when she was a freshman in high school we had one of the biggest disagreements we ever had. We were in the car driving during a miserable (and potentially dangerous) thunderstorm when I found out she didn’t have her medic alert on. It scared the daylights out of me. I punished her for not wearing it (she didn’t get to go to a movie with friends she had been looking forward to). And since she was a good kid, I thought that was the end of it.
But she continued not to wear her medic alert. I tried everything. I got custom-made jewelry with her info on it (they didn’t have any attractive medic alerts like they do now). I begged. I pleaded. I knew she had her medic alert card in her wallet but in an accident, she might get separated from her purse. Every time we talked about it, we got into a huge fight. It is the ONLY thing we have ever really fought about.
She is now 23, out of college, and she doesn’t live at home anymore. She still will not wear a medic alert.
Now I’m baring my soul here but I confess that I always have this deep, nagging (not really on the surface) fear that she will be in an accident and she will bleed out. I know wearing a medic alert isn’t a guarantee that she would be fine, but at least medical personnel would be aware that she has a bleeding disorder.
As a mom, a car accident is my greatest fear. That said, my faith is strong and I know worrying doesn’t help. But if I’m honest, the worry is there, particularly when she is driving. I am resigned to the fact that she is an adult and she has to make her own decisions and choices. I also know it is the only subject that is such a “hot potato” that we can’t even begin to discuss it. But I will always be her mother.
I know that she doesn’t remember those nights when she was little and I held her while she bled all night long. She doesn’t know how hard it is to watch your screaming child get medical procedures that are painful but necessary. She doesn’t know what it is like to lay in bed at night waiting for her to call and check in and let me know she is okay.
But I don’t know what it is like to be in her shoes.
Maybe when she has her own children, she’ll understand. But until that time, I try to respect her and be there for when she needs me. I pray every night that God will protect and watch over her. And that is all I know how to do.
Karen – thanks for opening your heart. Wow. This story touched me! Have I ever told you that you are a WONDERFUL mom? Well … YOU ARE! Love you.
i have a girlfriend whose son has hemophelia. it changed her entire paradigm of life. God bless you & Steph