For This Little Four-Year-Old, Impossible Is Nothing
Lifestyle| | By Allison Reynolds
We went to see a neurologist at Providence Hospital, and after a short observation, she diagnosed Brookie with spastic quadriplegia. Danny and I went home confused – so naturally we googled “spastic quad” and the words Cerebral Palsy kept coming up. In those moments, we couldn’t accept that reality, so we made a second appointment at Boston Children’s Hospital. When Brookie turned one, we traveled to our appointment and that is the day our lives changed forever. The moment the neurologist saw Brookie, she confirmed that our beautiful daughter has cerebral palsy. In an instant my body went numb. I spent hours pacing the hallways of the hospital, crying uncontrollably and holding my daughter tight. I was scared out of my mind. But that is also the day that I made a promise to Brookie. That day – in what was the darkest, scariest moment of my life – I promised Brookie that we would wake up and go to sleep smiling every single day. I promised that I would advocate for her, for all the people living with this diagnosis and give her the best life possible. The year following Brookie’s diagnosis was brutally hard. In many ways, I mourned the loss of a child. Like so many parents, I dreamed that my daughter would experience many of the best parts of my childhood: dance and tennis lessons; sleep away camp; running around with the other kids in the neighborhood. All of those dreams were stripped away and I felt robbed. I was in a very dark place until I read Emily Kingsley’s poem, “Welcome to Holland” about having a child with a disability. This poem brought me out of the dark and into the light. I was ready to accept this life and I started two online support groups – the first is Smiles For Brookie, where we advocate for Brookie and spread CP awareness, and the second is a private support group for CP families to feel safe and get support. It is my second family and has over 4,500 members. Instead of days filled with gymnastics or dance classes, Brookie goes to physical, occupational and speech therapies; each week she goes to hippotherapy, swim therapy, private speech therapy, Anat Baniel Method, on top of all school therapies. My daughter works so hard every single day of her life. Unfortunately, many of these therapies are not covered by insurance, which puts a huge financial stress on my family. Our motto is…impossible is nothing! Despite all the hard work, my daughter wakes up smiling, giggles all day long, has an inspirational joy for life and goes to sleep happy. She is the strongest fighter I know. She has had five gran mal seizures, received Botox injections to relax her muscles, and had SPML surgery, which helped reduce her spasticity and has made her stronger. The surgery alone cost us $18,000 out-of-pocket. She will be four-and-a-half years old on October 10, and today she is able to sit with pillows behind her and roll for a purpose – these seemingly little things are humongous to us. She is nonverbal, but she communicates with her eyes, smiles, points and is able to nod yes and no. She is being trained on a communication device, and is able to recognize all of her friend’s names in order to say hello to them in open circle time at school. We never listened to the doctors when they told us she wouldn’t achieve different milestones. We are blowing their minds daily and will never give up hope on proving them wrong! Please remember, if someone is different, they still have the same heart as you and me. Please teach your children to ask questions and help others. You never know when Cerebral Palsy or another special need may touch your life. It will send you on a journey you didn’t plan, but will ultimately enrich your life like you never imagined. Editor’s Note: To stay up to date on Brookie or join the Smiles For Brookie community, please visit the Smiles For Brookie Facebook page. If you’d like to donate, visit Brookie’s YouCaring crowdfunding page.