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

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett comes across.

To whom it may concern,

Hello! I am the lucky mother of one of your new students, Scarlett. I thought I should introduce myself and tell you what a special girl you have entering your class. She is charismatic, funny, thoughtful, kind, and always ready to help a friend. Her smile is infectious and she holds a special place in a lot of people’s hearts.

But as you also know, she has a bleeding disorder, which comes with its fair share of drama. Each year, as we begin a new school year, I start off riddled with anxiety. We want to make sure everyone knows the seriousness of Scarlett getting hurt, without scaring them into believing she can’t do anything. We have such a hard time dealing with the unknowns of her disorder and therefore find it difficult to explain the disorder to others with out freaking them out. Yes, her doctors consider her bleeding disorder life threatening. Yes, they have restricted her from physical contact sports. And yes, she does need to take head and abdominal injuries very seriously. But she doesn’t need to be bubble wrapped. We still want her to feel like she has the freedom to enjoy life. So THANK YOU in advance for letting her be an 8–year-old. 

As a teacher myself, I know the daily struggles of keeping an extra eye on certain individuals who may need more guidance. I know what it’s like to have a parent who seems to be hovering over their child too much, and I assure you this is not what I’m trying to do.

We are constantly trying to find the balance of giving Scarlett freedom and independence, while ensuring she’s safe and being honest about her injuries. THANK YOU for being patient with us as we navigate through this unknown territory. And believe me when I say, I know how daunting of a task this can be. Almost every time we give Scarlett an inch, she tries to take a mile, and she usually gets injured in the process. She fluctuates between being overly mature about her bleeding disorder to times where she doesn’t even want to talk about it, or will downright lie about getting hurt for fear of taking her medicine.Blog_Kari_Shield

We are continually learning what causes excessive bruising and bleeds. Diet, fatigue, growth milestones, and even fear, changes these restrictions through out each school year. There are many times when we will say she can do something and several days later, say she can’t. So THANK YOU for dealing with the ups and downs of her restrictions.

I know I seem worried about her socially and am constantly showing concern for her well being. So when I seem like a broken record asking who she’s playing with, what she’s doing at recess, and if she’s adjusting well, please know that I appreciate your input and am just trying to make sure she’s feeling unrestricted, and not different from her peers. I’m so afraid her bleeding disorder will be something others use against her. She’s at an age where she doesn’t like people to notice or ask about the bruises that cover her body and she definitely doesn’t want to feel like they’re something people are making fun of.

I know that I must come off strong and tend to ask for special care of my little one. But I also hope you understand what I am going through. Sending a child out into the world every day, without a shield to protect herself, is a scary thing for a mother. Every day I’m faced with the fear that this will be the day she gets an injury that sends us to the ER. So THANK YOU for watching over my little one and THANK YOU for understanding my fears.

I THANK YOU in advance for sitting patiently through our first 504 meeting as we brainstorm changes for the upcoming year. THANK YOU for promising to make changes to your daily activities, so that my child can participate with her peers. THANK YOU for dealing with the emotional rollercoaster of her disorder. And THANK YOU for trying to treat her like everyone else.

THANK YOU for being a teacher that day in and day out gives their all to in the classroom, and THANK YOU for still having time to make mine feel special. THANK YOU for all your help and understanding; it does not go unnoticed. I appreciate everything you do.

Forever grateful,
Kari, mother of Scarlett

Kari lives with her husband, Ryan, and 8-year-old daughter, Scarlett, and 4-year-old son, Walker, in California.


*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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