When Ania was diagnosed in October 2013, we had never heard of retinoblastoma. We were thrown into this new world of never before heard cancer lingo and treatment procedures. It's such a fog to me now as I try to recall those early days. At some point I will go back and read the first few blog posts if I feel like reliving that time frame I suppose. What I do remember most is that I had the guidance all along from someone who was introduced to me through a mutual acquaintance. I now lovingly refer to Beth as my "retinoblastoma mentor."
See, Beth is a warrior too along with her beautiful son Jake. Jake has faught a long long battle with retinoblastoma that has left him with one prosthetic eye and the other eye with very minimal vision remaining- his strong mother has been through it all with him. She has made herself an expert in parenting a child with Retinoblastoma. She has battled it out hard, doing everything she could, seeing many doctors and trusting her instincts all in the name of doing what was best for Jake. I admire her greatly!
Through every one of Ania's Appointments, exams under anesthesia, chemotherapy sessions, and the recent loss of her eye, Beth has been my number one, go to source for information. She would text me every time and I would ask her questions and get reassurance every step of the way. We have cried together, laughed together, shared fears and victories together- all via TEXT MESSAGES! That's why it felt so good to actually meet her in person today- and get a REAL hug!! :)
And there's Jake. Sweet, amazing, inspiring Jake!! This boy is just a gift- he really is! He's handled his long road of cancer in such a tough yet graceful way! I felt like I was meeting a superhero today as I anticipated his visit. This radiant boy, who has been through so much, who rollerskates and rides his bike around his neighborhood even though he is practically blind, who LOVES hockey & who shows his mom such gratitude and love at perfect moments in their lives, was an honored guest at our breakfast table this morning! I should have asked for his autograph :)
Jake and Ania, two little warriors who have inspired so many, met today. And it was delightful! Ania led him around her bedroom, he asked her about what was in her room, she described things and helped him feel around for a little caterpillar toy she made and was eager to tell him about. My favorite moment though, while they were sitting on her bed, Jake picked up a stuffed Minion character from the Dispicable Me movie and asked what it was. I listened as she told him and he moved his hands over the toy and then he asked "Does he just have One Eye?" And she replied "yes!" And the two of them just busted out in giggles!
Two of the bravest and most inspirational kids I know!!
Thank you Beth & Jake for joining us on our own journey. Thank you so much for your friendship and mentorship. We couldn't have made it this far without you!
God Bless,
Erica
Erica, thank you for your day to day real life stories.....I feel like I am with you and Ania is my daughter. I know, sounds creepy , but I love that you update us supporters on playdates, doctor "dates" and even little brothers and daddys interaction with babygirl Ania!!
ReplyDeleteNot creepy :) glad you are with us in spirit! Thanks for following along!
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