Living in Limbo

Limbo: 

Of the Latin root “limbus”, described as the “edge of hell”. 

1:    Also defined as: a region or condition of oblivion or neglect; a state or place of confinement; an intermediate place or state between two extremes; a state of uncertainty. 2:    A West Indian dance in which the dancers keep bending over backward and passing under a pole that is lowered slightly each time.

* definitions taken from Collins English Dictionary and Merriam Webster Dictionary

Everyday we wait for answers is another day in limbo. Last week my husband and I drove with Pepper to Sick Kids for her follow-up appointment. We were anticipating with great nervousness, the results from her genetic screening. The results were/are not yet in. We were sent home with no answers and a growing feeling of despair and loneliness.  We were also told that if her results come back negative for Dravet Syndrome, her next test will likely be a spinal tap.  The past couple of weeks leading up to this appointment have been feeling like living on the edge of hell. The growing worry, the fiery anxiety burning in the pits of our stomachs continue to keep us up at night and unfocused during the day. The limbo stick keeps getting lowered and lowered, and we are running out of space. 

With all this emotional uncertainty and our shipwrecked psyches, our little beauty has been carrying on just the same. She attended her therapy assessment where she was observed performing some of the milestones she has been able to learn thus far. We have been informed she will need some intensive therapy.  Pepper, at age 16 months is unable to pull herself up to a seated position, cannot stand unassisted and only makes the sounds “ba” and “da”. But, as I have mentioned before, she will have cheerleaders to rival any soccer parent. Forget the lawn chair, we are all in this together. Pepper’s seizures have still been on-going and mysterious. She had a record five days without seizure last week, which came as a welcome break and yet provided a frightening build-up. She is inching ever so close to the 300 mark, which will quietly be noted sometime by the end of this week. 

So as each of us bends over backwards to fit ourselves under that hurdle that keeps moving lower and lower, we continue to wait here in this state of limbo. We hope and pray that soon we will all be saved.