I'd be lying if I said that we are the only ones affected by Scarlett and my bleeding disorder. It takes an aray of family members, friends, doctors and educators to keep us safe and guide us in making appropriate decisions for me, my daughter and my family.
We are luckily blessed enough to have countless family members to help us not only emotionally but physically, and I couldn't imagine going through this without them. . . . My Moms and sister are my biggest support system after my husband. Their constant love and support has gotten me through times I had lost all hope. They are answering my phone calls at all hours of the day and night and always lending supportive words of advice and encouragement with every single call. My sister also lends that support, but is more who I go to when I need a good laugh. And then there's my sister-in-law. She lives the closest year round and is our emergency back up, she's a huge part of our life and takes on a big responsibility by being our back up caretaker.
On days that Scarlett's covered in bruises and we have to restrict her from another activity and my spirit is down, my family is always there to lift me up. When Scarlett was diagnosed with Platelet Storage Pool Disorder, my mother and step-dad (who lives in Palm Desert) promptly decided to get an apartment near my house too. My Mom is available to help at the times of year we need her and we usually plan ALL Dr appointments around when she will be in town. I've lost count of how many times she's had to step in, because my husband couldn't come to the Dr with me and drove all the way to Oakland with me. (I always try to have another person with me at Scarlett's appointments because I tend to get overwhelmed with all the info, so I like to have an extra set of ears!) Other family members come from 100's of miles away to visit and help with babysitting situations whenever asked.
On days that Scarlett's covered in bruises and we have to restrict her from another activity and my spirit is down, my family is always there to lift me up. When Scarlett was diagnosed with Platelet Storage Pool Disorder, my mother and step-dad (who lives in Palm Desert) promptly decided to get an apartment near my house too. My Mom is available to help at the times of year we need her and we usually plan ALL Dr appointments around when she will be in town. I've lost count of how many times she's had to step in, because my husband couldn't come to the Dr with me and drove all the way to Oakland with me. (I always try to have another person with me at Scarlett's appointments because I tend to get overwhelmed with all the info, so I like to have an extra set of ears!) Other family members come from 100's of miles away to visit and help with babysitting situations whenever asked.
Friends are also important.... I've lost a few on the way. A lot of them don't understand the things that consume me everyday! The ones that have stuck around support me, love me and let me share my ups and downs, without passing judgement. AND now I've got a new set of friends . . . . my bleeding disorder community. I've reached out to several different Facebook groups and made what I would call friends. They're there for me in ways most don't understand. There's always a sense of sisterhood and understanding between us all. As much as I hate to admit it, I'm thankful for things like Facebook and Twitter for bringing us all together to share our stories.
And finally there's my community of Dr.'s, teachers, and advocates that constantly take a part in our daily decisions. Platelet Storage Pool Disorder is so rare there just isn't enough information out there to guarantee we are taking the right path. "Our life plan" involves a plethora of opinions, that we have to filter through and decide what's best for us. I've been overwhelmed with the support I've gotten from Scarlett's school, all our Dr.'s at Kaiser, and all the advocates we've reached out to.
When Scarlett started Kindergarten she had literally never been under the care of anyone besides her parents, aunts or grandparents. We've been fortunate enough to always have someone taking care of her that is well aware and well trained in caring for her bleeding disorder. The family as a whole is always reminding Scarlett to be careful and to remember her limits. Trusting that a stranger will know when to take an injury seriously and decide when and what medical steps need to be taken seems so much to put on someone else and I would probably never foregive myself if something happened...... so we usually avoid a situation like this at all costs. I'm so THANKFUL and BLESSED to have the amazing support system that I do...... I hold a special place in my heart for all that have taken interest and/or gotten involved with this journey and for helping spread awareness of this rare disease!!! Thank you, thank you.
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
- 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
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
- 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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