We knew Grayson was an easy and laid back baby early on. (Easiest all-natural delivery ever!) In a family of hikers, he never fussed when being worn by his mama on the trail, and would squeal with delight whenever there was a breeze. Around the age of six months we noticed he wasn’t progressing quite as he should. Along the route to determining his diagnosis, he had countless blood draws, testing, observations, therapies, and a multitude of opinions as to the cause.
In June 2015, just three months after his first birthday, we received the news no parents should ever have to hear – Grayson has a terminal illness. It’s called Infantile Tay-Sachs and the average life expectancy is three years of age. This degenerative neurological disorder causes regression and the shutting down of all organs. We were told to engage hospice and prepare for the immediate end.
Grayson turned three in March, and we are completely aware that “the end” is slowly creeping up on us every day. We’ve had to carefully craft what we tell our six year-old, who is great at educating others about Tay-Sachs, but doesn’t yet know that it’s a terminal disease. We’ve become the experts on Tay-Sachs as it affects Grayson, informing the doctors of what we need. Just as important, we continue to be as much of the “Kemp family” we’ve always known ourselves to be, which includes hiking as a family and sharing those hikes on our blog, Family Trail Time.
Outside helps us stay normal
Being outside in nature with his family is the only thing we really know that Grayson has always enjoyed. We will get out on trails with him for as long as his health permits. Hiking as a family grows increasingly difficult, as it takes more and more to keep Grayson comfortable. As a result, we often look for paved or handicap-accessible hikes in order to keep him on wheels and have everything he may need. Those hikes we take that are not wheelchair/stroller friendly tend to be shorter hikes than we once took, we wear him in a front carrier, and everything – everything – depends on how Grayson is doing that day.
This life we have is not one anyone wants, but one we have learned to treasure. Hiking as a family keeps us grounded; we get fresh air and exercise and it provides us quality time to focus on each other and the natural beauty of this earth. When the time comes, Grayson’s older brother, my husband, and I will continue to go hiking together and we will continue to carry Grayson. It’s just that instead of wearing him on my chest, we’ll be carrying him in our hearts.
What can You Do?
From now until Labor Day, my family is challenging everyone to #hikeforgrayson. To do so:
Make a donation to the Cure Tay-Sachs Foundation (CTSF)
Go on a hike and post a photo on FB/Twitter/Instagram with hashtag #hikeforgrayson
And tag @curetaysachsfoundation + challenge at least two friends to hike for Grayson!
Our goal is to reach 1,000 donations this summer. No donation is too small, and all are greatly appreciated. All details and updates on #hikeforgrayson will be on our hiking blog. If any special needs parents (or anyone) would like to reach out to me as a resource, you can email me at firstname.lastname@example.org. See you on the trails! Felicia Kemp