Brave and Beautiful

Bella is four years old. She loves music, finger plays, and the book Chicka Chicka Boom Boom (like read it 50 times a day kind of love). She also loves to swing high and be tipped over while singing, “I’m a little teapot.” Her favorite people are her sisters and she will light up when they give her attention. Bella’s wheelchair and glasses are pink; she is our little princess. She loves to have someone come to her level, make eye contact, smile and/or say “hi”. Sadly, many people do not do this. Bella has never said a word and cannot walk, or sit up independently for long periods of time but her smile and giggle are spectacular perfection.

Bella is diagnosed with Phelan-McDermid syndrome, Cortical Visual Impairment, and Polymicrogyria. All of these diagnosis equal many appointments. Her calendar is more full than most adults. Most weeks include several hours of PT, OT, ST, and VT. She charms doctors, nurses, and therapists (along with an occasional horse) everywhere she goes. She rarely complains and she always works hard.

At six hours old, she began the battle of coordinating breathing with eating and sleeping, which she achieved around 8 months old (assisted by a daily nebulizer treatment). At four months old, she began the battle of tracking in an effort to see her world, which she is conquering daily (watching every move her sisters make). Around the same time, she began to fight with her muscles, pushing and straining with the help of many therapists, family members, a lot of bulky equipment, and a sweet pony named Sugar. She has begun to tackle communication. Not surprisingly she first conquered the ability to shake her head “no”. She will tap our hands to say “yes” and is choosing between two options on her iPad.

None of this has been easy. Sometimes it breaks my heart to put her in the car for another therapy appointment or put on her braces to squeeze in therapy at home, but I see her progressing. Sometimes it breaks our budget to pay for many of these out of pocket expenses. I dread meeting new doctors and quickly “fre” those who do not bother to say “hi” to her or at least smile at her. The struggle to have Bella’s medical needs covered through insurance sometimes leaves me so discouraged and angry (for instance, speech therapy is not covered as Bella has never spoken…does this make sense?). Despite what sometimes seems an exhausting journey, I see her finding her voice and her feet and I know that we are doing what she needs. Throughout these battles she has remained so sweet and loving. She is my brave, beautiful inspiration and I feel so blessed to share her victories.