My precious 9 year old daughter Sullivan has been having some issues since DBS, so we flew to Fort Worth, Texas to Cook's Children Hospital to have her evaluated and try to determine whether further surgery would be needed.
I contacted Rogers Hartmann through Facebook and she kindly gave me her personal number so we could talk things through.
I asked if she could help us and without pause, she said, "Absolutely. Tell me where and when and I will be there". She offered to just sit in the waiting room or sit in on the appointments.
She spoke with me before we left for Fort Worth and it was such a relief to know that she would be there to help us. At times, I have felt so alone in trying to help my wonderful daughter.
During one of the calls we had with Rogers, she pulled in another advocate who has children with generalized Dystonia and our conversation made me feel more prepared for my second crucial meeting with our doctors. What we had determined on the phone call, was what the doctors has determined, as well.
For the first visit, Rogers desperately tried to get to Cook's, but was unable to due to the freeway being closed after Dallas's snow storm. She sat in gridlock for as long as she could and then had to turn around.
The next day, she was able to get through and arrived in Fort Worth.
Upon Rogers' arrival, Sullivan and I immediately felt safe and special. She was so much fun and so positive.
At the end of the night, my daughter was wrapped in her arms with a huge smile on her face wearing Mardi Gras beads and masks.
What a great way to end a trip that could have been frightening and lonely.
Here is a letter and poem that Sullivan wrote for Rogers before we flew to Fort Worth:
"Hi Rogers, I have not met anyone else with Dystonia. I have Dystonia in my left foot. I had brain surgery in my head and I can walk again. I am going to be happy to meet someone with the same thing I have. Dystonia is pretty tough, isn't it? Well for me it is tough with dystonia. So I heard that you can have it in your neck (I won't giggle, I promise). I know how it feels to be giggled at. I know I will be friends with you.
From Sullivan
P.S. Here is a poem for you.
Roses are red
Violets are blue
I know how it feels
to be you, Rogers.
With love,
Trish
Posts
What a wonderful post! Thank you for writing that, Trish. Sending much love to you and Sullivan.
ReplyDeleteI have no words after reading this. It is so touching.
ReplyDeleteIt is my pleasure to share such a wonderful experience with others. I am so grateful that there are people out there that can understand, support and help my daughter and I.
ReplyDeleteI am a friend who loves Sullivan and her awesome and dedicated mom, Trish. Thank you to Rogers for embracing them and providing hope and strength. It is a challenging and often frightening time, with lots of questions. I am so thrilled to know that my friends have you to walk beside them. Gods blessings to you!
ReplyDeleteTrish, thanks for sharing this story with us. Rogers, you are amazing and Sullivan is amazing. Beautiful.
ReplyDeleteBest wishes to Sullivan and her family!
I would also like to add that it saddens me that Beat Dystonia/Rogers Hartmann is working hard to help others and is still recieving harrassment and threats. It is very sad.
ReplyDeleteGod bless. I know it feels good to have been such a big help to yet another person.
ReplyDeleteThat posting was great. I got teary eyed. you and Sullivan are two very special girls and Rogers seems to be an angel. I hope everything is going okay.
ReplyDelete"COURAGE IS NOT THE LACK OF FEAR. COURAGE IS BEING AFRAID AND SADDLING UP ANYWAY!!!".........John Wayne
Thank you for all the good wishes, love and blessings for Sullivan and I.
ReplyDeleteThis is a most beautiful posting. I agree, so touching. Words can not express it. Trish: You, Sullivan, and Rogers are all angels... flying arm-in-arm, upward, onward, and together.
ReplyDelete