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

You may have seen the new campaign, “Ban Bossy” that features Beyonce, Michelle Obama, Sheryl Sanberg and other prominent female figures. This campaign is focused on encouraging girls to be confident leaders, while discouraging labels such as bossy, aggressive, angry, or one of the many other commonly used epithets.

I think we as Hemo Moms are often faced with a similar challenge, where we’re perceived as bossy, demanding, b*#!%y and even crazy. The simple fact is that we need to be in control and we need to be assertive in order to advocate for our child to get them what they need. No apology necessary.

The Ban Bossy campaign is promoting activities and information sharing to move the cause forward, including a list of the top 10 leadership tips. Although these tips have been designed for girls, I’ve taken the liberty of translating them into a language that every Hemo Mom can understand.  Hopefully, moms can use these in their everyday dealings, especially with their medical team, school, caretakers, and even family members. Moms Blog_Wendy

Here are my top 10 leadership tips for Hemo Moms:

1. Speak Up

You have every right to voice your opinion about what you want for your child. Most of the time you’ll find that people are quite receptive and willing to help.

2. Stop Apologizing Before You Speak

Again no apology necessary.

3. Challenge Yourself

Step out of your comfort zone. Don’t be afraid to request a team meeting at school or go right to the top to talk about your child or a specific incident. If that’s already within your comfort zone, then maybe you can challenge yourself in another way, like volunteering at your local chapter. The important thing here is to not let fear get in the way of progress.

4. Ask for Help

Where do I begin? There are so many things hemo moms need to do. First acknowledge that you need help. Then pinpoint a few specific things you need help with, and then ask. Don’t be shy. You’ll find that people like helping and often times just don’t know how.

5. Don’t Do Everyone Else’s Work

Hemo Moms tend to take control of situations, but don’t try to do everything yourself. Believe me – its not easier. And you’ll end up feeling resentful. So have your partner help you infuse, get the kids to help you with chores, and call grandma to babysit.

6. Speak Up in Friendship

It’s important to tell your friends and your child’s friends (or at least their parents) that your child has hemophilia. Your friends will support you if they are truly your friends, and your child’s friends’ parents should know in case an emergency situation arises. Just be honest and open and people will respond to that.

7. Trust Your Inner Voice

When it feels like something’s not right, chances are something is not right. Sometimes the best medical advice in the world isn’t the right advice for your child. Go with your gut.

8. Change the World

Change the world by spreading awareness:  wear red on World Hemophilia Day, share facts during Hemophilia Awareness Month, visit your state or national legislators to talk about the issues that matter to you, educate yourself about global issues facing bleeding disorders. Little things make big a difference when we are all doing something to make the world a better place.

9. Remember: It’s Not Always Easy to Speak Up, but It’s Worth It

Sometimes it can be tough to be direct about what we want for our child. It may feel like we’re going against the grain or opposing advice of a well-respected professional. But it’s important to speak up and have that dialogue. It doesn’t have to be your way or the highway, but you are certainly entitled to express your concerns and discuss anything related to your child’s well-being. Another positive consequence of doing so is that you’re modeling this behavior for your child and letting them know that you are their advocate and that eventually, they can be their own advocates.

10. Practice

You’ll have many chances to practice speaking up and advocating for your child – at school, the hospital, the playground, playdates, family gatherings…the list goes on. There’s no shortage of opportunities. That’s for sure.

Remember – it’s up to us to lead, educate and advocate for our child. While we might be called bossy, controlling, or angry, we’ll sleep better at night (and so will they) knowing that we’ve done our best to keep our child safe.

Wendy lives with her three children Kaya (15), Tai-yan (15) & Khaliq (13) in Brooklyn, NY and is the vice president of HFA board member, vice president of the New York City Hemophilia Chapter (NYCHC).

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*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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