Winter had come to the forest. Bree and her family had spent a good deal of the fall collecting acorns, nuts, and berries to put away for the cold winter months. Now that the snow had settled all around them, Bree’s mother was busy knitting scarves, gloves, and hats for everyone in the family.
Her mother had just finished knitting her a bright pink hat, with a pompom on the top! The hat was perfect, not just because it was pink, Bree’s favorite color, but also because it was the same color pink as her wheel chair and crutches! Bree was born with something called Spina Bifida. The doctors had said that she probably wouldn’t ever walk. Bree proved them wrong, and could walk with the help of her crutches. She did still need the help of her wheelchair when she was tired or if her family was planning on going somewhere that required a lot of walking. Bree was okay with that because she loved her bright pink wheelchair!
Since her mom was so busy with knitting, most of the meals in the last week had been quick easy things. All of her mother’s focus was on getting enough clothes knitted for the winter. But Bree was craving her mom’s famous, Acorn Soup. Bree asked if they could have that for dinner tonight, her mom agreed but only if Bree would help her. While her mom worked on finishing up a scarf for one of Bree’s brothers. Bree went through the basket of acorns and picked out the very best ones. She showed her mom each one to double check it was good enough for the soup. Then she went to gather the rest of the ingredients in a basket from the pantry.
Soon she had everything set up, her mom took a break from knitting to teach Bree how to make the soup. She showed Bree how to hit the acorn with a small hammer in just the right spot to make the cap come off. It was important to save the cap, and not crack it, because they were going to use the caps for bowl once the soup was finished.
Once all of the acorns and caps were separated, they started chopping up the rest of the ingredients and set them to simmering on the stove-top. It wasn’t long before the whole house was filled with the delicious smell of soup. Bree’s little brothers and sisters kept popping their heads into the kitchen and asking if dinner was done yet.
Bree and her mom set the table and filled each acorn cap with the wonderful soup, Bree realized that spending time with her mom, was even better than the soup! But when she could have both on the same day, well, that made the day just about perfect!
Spina Bifida in a nut shell...
Spina Bifida (SB), literally meaning "split spine", is the most common, permanently disabling birth defect within the USA. 1,500 to 2,000 (out of 4 million) children are born with SB each year. However, it is still considered Rare. SB is a form of neural tube defect. For SB that means that a section or portion of the bones of the vertebrae (neck and back) do not develop and close properly and the spinal cord is left unprotected.
SB happens in utero, which means it happens while a baby is developing in their mother's womb. It is unknown why SB occurs but a combination of genetic and environmental factors are suspected at this time.
SB symptoms can be very mild, to the point of being unaware of them, to severe and an individual with SB will need considerable help from others. Working with a physical therapist (PT) and occupational therapist (OT) is often very important to help children learn how to navigate their physical challenges. Some children with SB will need the help of a wheelchair full time and others may only need it part time, like Bree the mouse. AFOs and SMOs, special leg and ankle braces, can be helpful to strengthen and correct incorrect positioning.