As I sit down to write this I am again riddled with guilt . . . As I walked in the door this evening after a long day I was met at the door with a crying Scarlett sitting on the couch. She had just bumped her chin on the stool and already had a familiar bump forming on her lower chin. As soon as she saw me, she got that look in her eyes. . That look that screamed please don't give me my nose spray/medicine. I calmly walked over assuring her that I would let her put ice on it for a few minutes first to see what happened. . . Within a few minutes the bruise was getting bigger and darker and starting to swell. I looked at my husband and looked at my daughter and just wanted to break down. I HATE THAT IT'S MY CALL. . that I have to be the bad guy, the one that has to convince her its worth it (half the time not even feeling secure with the fact that I'm giving it to her myself). My husband never feels confident with making the final call and has always said that I am the decision maker when it comes to Scarlett's bleeding disorder. Therefore the guilt and decision making. . . all goes on me.
As I've mentioned before. . . me and my daughter have horrible reactions to our Stimate Spray. . . So I feel horrible every time I have to see her endure the side effects associated with them. I asked her tonight how she felt and she told me . . . "I can't really explain it, but I just don't feel good. I feel like a have a lot of dots in my head, you know and kind of wiggly. My legs don't really feel right when I stand up and my arms feel kind of lazy." About a half hour after she takes her meds you can see her whole demeanor change- her eyes go glossy and she looks like she can't focus, she gets tired, lazy and she always complains that she doesn't feel good. Tonight as I was putting her to bed she told me she "wished she didn't have to take her medicine" and then asked me if "we would have our bleeding disorders in heaven?" It's the moments like this that could bring me to my knees. It's like someone punched me in the stomach. Scarlett talks about Heaven a lot that way. . I think she thinks if she went to Heaven everything in the world would be fixed, including her bleeding disorder. . . Now how do you explain that one to a 5 year old?
I know I'm in some ways lucky that Scarlett has one of the less severe bleeding disorders and that she doesn't have severe bleeds happen to her on a regular basis. I know we are lucky that we don't need or go through what other people with bleeding disorders may go through . . But in some ways I think it would be easier knowing I was going to have to go through hell to give her meds every week vs. having to be the one to decide at every incident whether this bleed was worthy of medicine or not . . and then go through the hell of having to give it to her. I'm always worried that the time I decide not to give it to her, is the time it's going to cause a horrible hemorrhage or that I'm giving it to her too much or too little. . . It's a lot to take on emotionally and today I'm not taking it well! I just wish the Dr.'s had more answers and could find a medicine that they know worked so it took that part of the stress off of my shoulders.
But that's why I'm spreading the word and trying to raise awareness of this rare disorder. Hopefully by the time Scarlett is faced with the decision to have children, she will be able to do so safely. . . and have the medications provided for her and her offspring to live a life with no restrictions and meds they know worked.
As I've mentioned before. . . me and my daughter have horrible reactions to our Stimate Spray. . . So I feel horrible every time I have to see her endure the side effects associated with them. I asked her tonight how she felt and she told me . . . "I can't really explain it, but I just don't feel good. I feel like a have a lot of dots in my head, you know and kind of wiggly. My legs don't really feel right when I stand up and my arms feel kind of lazy." About a half hour after she takes her meds you can see her whole demeanor change- her eyes go glossy and she looks like she can't focus, she gets tired, lazy and she always complains that she doesn't feel good. Tonight as I was putting her to bed she told me she "wished she didn't have to take her medicine" and then asked me if "we would have our bleeding disorders in heaven?" It's the moments like this that could bring me to my knees. It's like someone punched me in the stomach. Scarlett talks about Heaven a lot that way. . I think she thinks if she went to Heaven everything in the world would be fixed, including her bleeding disorder. . . Now how do you explain that one to a 5 year old?
I know I'm in some ways lucky that Scarlett has one of the less severe bleeding disorders and that she doesn't have severe bleeds happen to her on a regular basis. I know we are lucky that we don't need or go through what other people with bleeding disorders may go through . . But in some ways I think it would be easier knowing I was going to have to go through hell to give her meds every week vs. having to be the one to decide at every incident whether this bleed was worthy of medicine or not . . and then go through the hell of having to give it to her. I'm always worried that the time I decide not to give it to her, is the time it's going to cause a horrible hemorrhage or that I'm giving it to her too much or too little. . . It's a lot to take on emotionally and today I'm not taking it well! I just wish the Dr.'s had more answers and could find a medicine that they know worked so it took that part of the stress off of my shoulders.
But that's why I'm spreading the word and trying to raise awareness of this rare disorder. Hopefully by the time Scarlett is faced with the decision to have children, she will be able to do so safely. . . and have the medications provided for her and her offspring to live a life with no restrictions and meds they know worked.
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
- 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
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
- 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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