Willow’s 4th Birthday: Challenges & Blessings
by Anna Siedler
Another year has passed us by. Every day has brought Willow and our family both challenges and blessings, creating growth in us personally that we could never have imagined. As always, she continues to make everyone she knows appreciate life a little more than they did before they met her.
This years challenges included increased frequency in her seizures and the frustrations involved with finding the delicate balance of just the right prescriptions to unlock seizure free life for our little princess. Up until a month ago she was having seizures daily. Some were a new form of more physically depleting seizures, which reached a record length of two minutes. If I’m honest, I questioned if I had the emotional strength to remain optimistic. We were getting scared. She was lethargic and we felt powerless. It was after that long seizure that we changed her medications one more time, never quite giving up hope that she could improve.
Persistence is important as any parent with a medically complex child knows, and our prayers were answered. Our sweet girl went from multiple seizures daily to suddenly none. She was more interactive with people talking to her. So much that she started “talking” ALL the time! When I say talking it’s more like expressive shouting, but nevertheless her energy and expressiveness is sweet music to our ears. She’s smiling more than ever and is one of this years blessings. I’m happy to report it has been a month seizure free.
Through these struggles I am reminded of how much strength we all have to make it past difficult times, regardless if we feel we’re capable of it or not.
In addition to overcoming the challenges posed to her by seizures, Willow was able to travel across Canada and spend valuable time with her Nana, Gramps, Aunty, Uncle and Cousin from her dads side in British Columbia. She loves flying almost as much as she loves car rides! While there visiting we strolled along the beach, got painted ‘tattoos’, danced around her at mini golf and just enjoyed family time surrounded by those we love in the beautiful mountains of BC.
She was also blessed with her very first wheelchair, which makes outings far more comfortable now that she isn’t slouched and unsupported in a stroller. It provides her a whole new “big girl” vantage point to take in the world around her. She received AFOs to help support her feet and a stander which she uses like a champ provided she gets to enjoy her BabyTV shows!
She continues to grow at a good pace, eating more vegetables than anyone in the house (provided they are diced, soft and with her demand of spaghetti sauce on top!). She will occasionally cough while eating and continues to show some challenges organizing the food correctly in her mouth before swallowing. We will continue to monitor her feeding at the local feeding clinic. With everything Willow has taught us, we know to take things one step at a time.
Next year is kindergarten…I’m sure she will do great, but pray for me 😉