In the wee hours of the morning, I feel tiny hands pulling at my shirt looking for comfort. I roll over and oblige followed by the sweet sound of “up” meaning : “Mama, I want to lay on you”. Again, I oblige. I notice the soft fuzz on my face as Brooklyn tries to decide which way she wants to lay her head and after she finally gets comfortable, I feel the slightest “pat, pat, pat” on my chest and an extra nuzzle before she falls back asleep. I rub her back, feeling every tiny little vertebrae that we made from scratch. Her legs are longer and she takes up the majority of my chest when she sleeps on me and I continue to be amazed that this tiny human is mine. And she’s Ben’s. And she is such a blessing.
Our time for treatment came to an end and Brooklyn rang the “End of Therapy” bell in February. There have been a lot of adjustment from attending weekly appointments to now having nearly none. You can almost say I felt like I went through an identy crisis again trying to figure out what I do now that we no longer have these appointments. I thought it would be a good idea to find other sources of support from other families with children who had anaplastic ependymoma and quickly found that it did not serve me but rather increased my anxieties and fears about all of the “what if’s”. With the enormous blessing sitting in front of me, I unfollowed and disconnected from anything cancer related that didn’t serve me. What I have found by eliminating distractions that are mentally unhealthy for me has allowed me to develop new friendships, enjoy watching our daughter THRIVE and learn new things, and has given me a greater appreciation for what a blessing I wake up to every day…with new fuzz to ogle at.
I don’t even know where to begin with all of the changes in Brooklyn since she’s finished treatment. Physically, she is more willing to play on her belly. She has learned how to get up on her knees to use me and Ben as her personal jungle gym. In addition to flying around bum shuffling, she knows “backing up!” and thinks it’s comical. She is talking more, expanding her vocabulary and signs to over 22 words.
Brooklyn has learned to shake her head, knows all the verses to “The Itsy Bitsy Spider,” and “The Wheels on The Bus”. Brooklyn has grown to love “Bluey” and knows the opening credits and the appropriate times to say “mum” or “dad”- we started with the soundtrack after seeing a few episodes in the clinic and now the screen time has become a nice treat for her on occasion. Brooklyn knows and recognizes family members and is working so hard to sign “I love you,” which for now looks halfway between “ I love you,” and “Loser”.
Along with her excitement for the arrival of her dad after a long day at work, Brooklyn isn’t afraid to let him know that its time to play immediately when he gets home with their gentle jog throughout the house with a “ready, set,” by Ben and an excited “go!” from Brooklyn. We help her stand and sometimes she tries to run through the house, and the only thing I can think of when we do this is when Ariel gets her legs- I giggle at her little mermaid legs because shes trying! I hope the visual makes you smile. She can identify her belly button, head with her fuzz, eyes, ears, nose and mouth. Brooklyn is a huge fan of the “Brush Your Teeth” song from Ms. Rachel and isn’t afraid to stick her finger out like a toothbrush and rub her teeth.
Speaking of teeth, her dental surgery March 1st went so well and I could not be happier with her dentist. Bless this doctor because he did not extract one tooth and her sweet little smile is still in tact with minimal visualization of her crowns.
Brooklyn’s “helpie hand” is coming along nicely as well! She has learned to fist bump with her right hand and is more aware of it when you ask her about it. It is less fisted consistently and she is more willing to use it when encouraged. She is getting quite good at becoming more accurate with high fives and fist bumps with her right hand and we celebrate every time. Brooklyn has learned to throw a ball quite well (with her left hand) to which I inform my husband that maybe our daughter will take after her mom and play softball or volleyball- the debate that there are more sports than cross country and track is never ending.
The cheeky side smile that is characteristically associated with Brooklyn is becoming more symmetrical and fuller. Brooklyn has a healthy glow (if that even makes sense) to her since she ended treatment. It is evident that she is feeling better through increase in her playfulness and vocalization. It really is such a neat thing to walk into another room and hear “mama, Mama MAMA!” like a form of echolocation, to which I respond “baby!”. This child lights up my life.
So with our bedtime prayers, before I put Brooklyn in her bed, I look at her sweet full cheeks, long eyelashes and little lips and find myself in disbelief that this child is ours. We made her from scratch and there is no other human being in this world like her. She is strong, independent, funny, curious, charming, and such a blessing! We ask God, and St. Padre Pio to keep their healing hands on her, to keep her free from disease, and to bless the doctors and staff that saved her life.
God has made Brooklyn and she is fearfully and wonderfully brave.
Fearfully and Wonderfully Brave 