Joyful Footprints

You are my sunshine, My only sunshine
You make me happy, When skies are gray
You’ll never know, dear, How much I love you
Please don’t take my sunshine away
– by Jasmine Thompson

I admit I was the type of person who rolled my eyes if and when I hear incessant baby cries on a plane. Then I had my first and only child at 36. I was not a natural mother who likes to coo to my newborn baby. My mom comforted me and shared with me that she was also the same. It was Allegra’s dad who had gone gaga over his baby girl. We named her Allegra, meaning happiness in Italian. After all these years, I came upon only two people who knew that I named my daughter after me, Joy. Our baby girl was a happy, smiley baby who bonded with us, her parents easily. I breastfed her for almost two years, and enjoyed the closeness we shared between the two of us.

As a first-born grandchild and niece, everyone in my family was crazy about Allegra. Then the bad news struck.

During her one-month checkup, her pediatrician noted her extremely low muscle tone and diagnosed that she has severe hypotonia, commonly known as a floppy baby syndrome. He prescribed Allegra to start physiotherapy immediately. That started the long journey of research and learning everything I could about the developmental delay causes and facts. When she was one year and two months old, the neuro-pediatrician prescribed an MRI of her brain to determine if she has macrocephaly. My mom and I spent an excruciating 3 hours of our lives in the clinic and I still remembered the tears we shed over the preparation procedures my baby had to endure; first, they put her to sleep, then she was placed onto this extremely noisy MRI machine. Then the machine suddenly stopped midway. A nurse came to inform us that her veins are too small and transparent and asked for my consent to do another procedure to improve the scanned image. What could I do but gave my consent? We looked on with horror from the glass partition when a nurse came in with a huge needle with blue liquid and gave her a quick shot on her small thigh. Although she was asleep, I saw my baby’s face slightly flinched when the big needle went in. The guilt I felt was monumental, it hit me like a gut punch. I looked back to the start of her life and wondered, did my weeklong skiing in the high-altitude Alpine mountains or the hot wine I drank, or the hottub I enjoyed aprè ski may have affected her neurologically? I reevaluated the time I was carrying her; did I not have enough exercise, did I missed taking the neonatal vitamins, did I not eat enough fruits and vegetables, you name it, I went through a long list of what ifs, should haves and could haves, to try to find what I may have done to contribute and caused her to suffer this pain and worst, to not get a chance to thrive as a healthy, loving, bouncing baby I dreamt to have as my firstborn child.

Soon after the one-month checkup, her pediatrician prescribed weekly physiotherapy to start immediately, then he added occupational therapy at 9 months and speech therapy at 12 months old. To lower my expectation, the doctor told me that if her muscle tone did not improve, she may have difficulty with walking and talking.

As a first-time mom, I felt overwhelmed, and afraid for my child as each new day passed and she grew right before our very eyes. It became a race to learn everything I could from specialist doctors, therapists, and google searches. I followed every piece of advice given to me by the neuro-pediatrician and various therapists. In addition, I also tried to learn everything I could about the medical terms and the possible cause of the neurological issues my baby was diagnosed with. What I did not or could not allow myself to do was ask why me and wallow in self-pity. Nevertheless, the deep-set feeling of guilt never goes away, to this day.

However, after months of intensive therapy sessions, our prayers were rewarded and to our delight, Allegra started to walk at 18 months and started to talk in two or three words sentences at 28 months. Although she spoke in full sentences at six, my worries were less intense than when she was a one-year-old infant.

By the time, she turned two, Allegra was offered the “HEADSTART” Program at the George Washington School in Edgewater, New Jersey and she started the program when she turned three. She benefited from the program immensely and her first teacher from the program, Donna Johnson, became a lifelong friend. By six, she has already learned to swim, learned how to tap dance, and regularly worked with a private gym teacher to improve her muscle tone.

That was almost 30 years ago. Allegra still has many challenges and the road ahead may not be as smooth as she and I wish it to be. However, despite the doctors’ warnings, she can now walk and talk, she can swim, can cook a meal for herself, can do food shopping, do her own laundry, and is as independent as anyone at her age could be. Yes, to my chagrin, her room is still messy, she loves to cook but leaves the kitchen like a bomb hit the place and forgets her things everywhere. But I learned to appreciate what she can do rather than what she cannot and found a balance and peace between us.

What is Allegra good at; she is the kindest person I know of. She loves people young and old. She wants everyone around her to be happy and smiling. She loves to help the underdog and she will give you the shirt she is wearing if you need it. As a young child, I had to train her not to hug everyone she sees, as body contact was not permitted in the U.S. school system. When she arrived in Geneva in 2001, she was in her best element when hugging is part of the French culture.

Now, as we started our road trip across Spain and Portugal, Allegra sat next to me and acted as my live GPS as she guided me with directions and warned me to change my speed limit at different locations. Having her next to me felt like a safety blanket, and I drove with confidence heading to different destinations.

To my delight, she told me that she recently brushed up on her high-school Spanish and taught me a few words in how to say thank you, how are you, etc. in Spanish. Allegra is less pretentious than me when it comes to speaking new languages. I want my sentences to be perfect but she has no qualms and just says the words and makes up the sentences and does not care if it is the wrong verb or adverb. I so admired her courage and her freedom of expression. I also appreciated her sense of direction which I horribly lacked. She loved to tell me “Mom, what could you do without me?”. Indeed, what could I do without her? She made my life better with her companionship and more enjoyable with her smiles and sense of humor. She taught me how to be humbled and appreciate the small stuff each and every day.

A quote I found on ILIKETOQUOTE.COM said “A strong and positive attitude creates more miracles than any other thing because life is 10% how you make it, and 90% how you take it.”

Life is what you make it to be. Allegra and I chose to make it positive as we leave our footsteps along our life paths…..