Hello, again. I hope you are finding some value in the retelling of our story. It has sent me on a rollercoaster down memory lane as I recall not only the events, but the emotions that came with every step we have taken. I am reminded of the goodness of God, and His promise to never leave us or forsake us (Hebrews 13:5).
A couple years after we launched Safe Place, we decided to homeschool Skyler. We wanted him to receive more therapy, one on one time and the freedom homeschooling gave us with our girls. It was another leap of faith and turned out to be an even more God-directed decision than we knew.
At 13 years old, Sky started that lovely time of life called puberty. As his hormones changed, so did his medication's ability to control seizures. It all began when we were on a trip in Oregon. Sky began having seizures for what seemed for no obvious reason. This began a downward spiral of dosage changes, medication changes, and hospital stays that lasted for the next 6 years. We were again in the grip of scary times. As the seizure activity increased, Sky's ability to walk on his own decreased. Eventually, he lost all ability to walk independently, even one hand assistance became under both arms assisted. As Sky's body grew in stature as all men do, we reluctantly welcomed the wheelchair for when he was having a rough day and to get around during daily errands. Knowing all the work he put into walking independently, it was crushing to see him struggle again. Add daily movement to the list of things not to take for granted.
During this time, we again noticed him aspirating his fluids and not chewing his food completely resulting in food blockages in his esophagus. To remove a food blockage was especially terrifying; the food either had to eventually make its way down to the stomach, or in most cases we waited for Sky to vomit it up, which could take up to 2-3 hours. His poor body would create flehm that he constantly coughed up. I can't tell you how many restaurants we walked out of coughing teen in tow, flehm and food remnants spewing out of his mouth as our girls requested our food be boxed up and taken to go. We learned the hard way to thicken his fluids (once again) and never leave the house without his food chopper to puree ALL his food. I couldn't imagine going through these trials if we didn't have Sky at home with us.
Skyler is 21 years old now. His seizures are mostly under control by the grace of God. We still use the wheelchair, food chopper and fluid thickener, and he still needs lots of assistance to walk. However, Sky has made progress through the use of a stander to help with muscle tightness and his treadmill exercises. Our goal is for him to stay mobile and active in his community. Sky is such an outgoing guy; he has so many people who love him.
Through this time, we designed our home use bed to add to our product line. Jon and I want Safe Place to be the brand you trust to provide safe sleeping solutions and sanity of mind whether at home or away. Our own struggles with getting adaptive equipment have really driven our vision as a company. A desperate parent needs solutions now, not in 6-9 months. The caregiver hanging on by a thread needs someone to advocate for the products they need, not be just another number in line. We wanted to make an impact in this area because we have been there, done that, got the t-shirt. We decided to take the harder road and become something more than just a product company.
I'll tell you more about that next time.
Live without Limits.