I'm always questioning whether the ways I'm dealing with Scarlett's bleeding disorder are going to end up scarring her for life. It's very hard for me to know when it's ok to baby her and when I need to teach her more tough love. A lot of the time I feel like we just spoil her and give her everything she wants cause we feel like we have to say No and restrict her from so many other aspects of her life. . .
I'll never forget the day that Scarlett was talking about all the toys she has. She ended the conversation by telling me that she "must have so many toys because I love her Soooooo much," I responded by telling her that of course I loved her and that she had so many presents because everyone spoils her so much. She thought about that for a minute and responded with "that's because of my bleeding disorder." This response left me feeling a mix of different emotions- Why would she think she only gets thing because of her disorder? Does she think it's why we love her so much? That if it weren't for her disorder she wouldn't be so loved and spoiled by her enormous family? As I've mentioned before I'm a huge worry wart so conversations like this haunt me for days.
I think the hardest thing that I have to deal with as a parent of a bleeder, is balancing keeping her safe and letting her be a child and learning her own boundaries and ways to be safe. I was home with Scarlett for the first 2 1/2 years and then I got a job teaching at a preschool that she could attend. SO until her first day of Kindergarten she literally had never been in the hands of another caretaker besides a family member. The daily stress that goes along with leaving her with others and entrusting they will know how to handle a serious situation takes a lot of trust and faith. Like any elementary school. . . Scarlett is under the care of several different staff members whether it's her teachers, aids, parent volunteers, office staff, librarians, or yard duties that all have to be informed and entrusted to make the right decisions when it's comes to an injury involving her.
We went into her first year of school very optimistic that she would be able to live a normal existence on campus. . . However, in the first 6 months of Scarlett being in Elementary School we got several phone calls from staff members saying that she had bumped her head on the play structure. . . by Thanksgiving of Kindergarten year we decided to pull her from climbing on the play structure. . . a hard decision for my husband and I to make, but a necessary one to keep her safe from any life threatening situations.
It's decisions like this I literally lose sleep over and stress about daily. I get a lot of opinions on what and how I should be restricting my daughter, from people not only close to me, but complete strangers. My response to them is that you will never know what it's like to have a child with a life threatening disorder, until you have one. The every day worry, I assume that all parents have, is escalated to a level nobody could imagine when you are trying to prevent them from getting hurt from every day life experiences. People take for granted things like a bad fall, slight concussions, or abdominal injuries that so many of our children experience as they are getting to know their bodies and their boundaries. . . accidents like that, could kill her.
I feel like every day brings on a new challenge or learning experience when its comes to my daughter's bleeding disorder. I'm constantly learning from every bump or bruise she gets and what caused it and what worked to make it heal faster. The Dr's, her teachers, peers, and countless family members make mental notes constantly to help keep her Dad and I informed . . . and I am forever grateful for all those involved in trying to keep her safe. I assume that as she goes through every life stage we will learn more about this rare disorder and what it has in store for us. . . and we are ready for whatever it throws at us!
We went into her first year of school very optimistic that she would be able to live a normal existence on campus. . . However, in the first 6 months of Scarlett being in Elementary School we got several phone calls from staff members saying that she had bumped her head on the play structure. . . by Thanksgiving of Kindergarten year we decided to pull her from climbing on the play structure. . . a hard decision for my husband and I to make, but a necessary one to keep her safe from any life threatening situations.
It's decisions like this I literally lose sleep over and stress about daily. I get a lot of opinions on what and how I should be restricting my daughter, from people not only close to me, but complete strangers. My response to them is that you will never know what it's like to have a child with a life threatening disorder, until you have one. The every day worry, I assume that all parents have, is escalated to a level nobody could imagine when you are trying to prevent them from getting hurt from every day life experiences. People take for granted things like a bad fall, slight concussions, or abdominal injuries that so many of our children experience as they are getting to know their bodies and their boundaries. . . accidents like that, could kill her.
I feel like every day brings on a new challenge or learning experience when its comes to my daughter's bleeding disorder. I'm constantly learning from every bump or bruise she gets and what caused it and what worked to make it heal faster. The Dr's, her teachers, peers, and countless family members make mental notes constantly to help keep her Dad and I informed . . . and I am forever grateful for all those involved in trying to keep her safe. I assume that as she goes through every life stage we will learn more about this rare disorder and what it has in store for us. . . and we are ready for whatever it throws at us!
Written by,
Kari Peepe
Written by,
Kari Peepe
For more stories on raising children, when one of them has a bleeding disorder please check out
- Raising Siblings, when one of them has a special disorder: http://atouchofscarlett.blogspot.com/2013/11/raising-siblings-when-one-of-them-has.html
- A Mother's Guilt: http://atouchofscarlett.blogspot.com/2013/12/a-mother-guilt.html
- It Takes a Village: http://atouchofscarlett.blogspot.com/2013/12/it-takes-village.html
- My little prince, (the non bleeder): http://atouchofscarlett.blogspot.com/2014/01/my-little-prince.html
- Family Fun Days-keeping the kids entertained safely: http://atouchofscarlett.blogspot.com/2014/02/family-fun-days.html
- My son bites Scarlett: http://atouchofscarlett.blogspot.com/2014/02/no-no-bite.html
- Another Day of Being Riddled w/Guilt: http://atouchofscarlett.blogspot.com/2014/04/another-day-of-being-riddled-with-guilt.html
- The What if's: http://atouchofscarlett.blogspot.com/2014/10/the-what-ifs-of-life-with-bleeding.html
- A local flood, fills us with fear: http://atouchofscarlett.blogspot.com/2014/12/flooded-with-fear.html
- Call me paranoid, but this is the parent I've become: http://atouchofscarlett.blogspot.com/2014/12/call-me-paranoid-but.html
- Scarlett learns to give back: http://atouchofscarlett.blogspot.com/2015/01/the-gift-of-giving.html
- Scarlett learns to advocate: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html
- Becoming her own protector: http://atouchofscarlett.blogspot.com/2015/10/infusing-loveher-own-protector.html
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