White Cane Training, Day One
I won’t lie, I was afraid of today.
Isla has been practicing white cane training with an orientation and mobility specialist at school as preemptive preparation for further vision loss. Today was the first time I was able to come observe her training in person.
Today was the first time I saw my baby holding a white cane. Holding proof of one of the many things this disease wants to take from her.
I was afraid that seeing this in person (like other similar milestones that have come before) would send me into an unavoidable emotional breakdown.
…But it didn’t.
Don’t get me wrong, it was difficult at first. But with a deep breath came a gift from God: a feeling of peace. I didn’t focus on the cane. I focused on Isla’s confident smile as she cruised up and down the hallways holding her new tool.
While it’s not unheard of, a nine year old with CLN3 that still has functional vision is very rare. This is a blessing I don’t take for granted. I have come to terms with the fact that without a medical miracle Isla will soon lose what vision she has left. And if that is the cost of this disease… fine. It can have it. But thats ALL it can have.
I understand by saying this I am asking for Isla to be the first CLN3 child in the history of the world to have a different outcome.
But God has blessed us with the opportunity for Isla to have a shot at making history. Because of the support of our community we are able to pay for Isla to be on a medication that could potentially alter the path of this disease.
Only time will tell,
but hear you me…
I am not afraid.
