MY NAME IS BRET.
THIS IS MY STORY.
Our son Bret was born full term after an uneventful pregnancy on March 17, 1996. During his first week he became jaundiced (not sure if that’s the correct way to state it), and a week later we took him to the hospital when he was unresponsive after taking an unusually long nap. A spinal tap was performed, showing some type of infection; and antibiotics were administered before we were sent home. Bret missed all of the typical milestones; turning over, sitting up, eye contact. His pediatrician kept telling us he was fine, but we knew (really, his mother knew from the start) he wasn’t developing as a typical child. Every doctor we took him to said he was just delayed, but they were confident all would be okay. Angie kept insisting we find a doctor willing to listen to us, and finally, when Bret was about 10 months old, we found a doctor who agreed he was not progressing typically. We immediately began physical, occupational and speech therapies, which continued for the next 14 years.
We became consumed in trying to figure out why Bret was not progressing, and what “diagnoses” could be found . We joined support groups, sought out doctors in different cities. It was a tough juggling act, as Bret was the youngest of three children, and his older siblings also needed attention, not to mention I had a small business to run. Angie stopped working, and made our children her full time job. She enrolled Bret in Babies Can’t Wait, and other government funded programs, like Katie Beckett and Medicaid. The paperwork and interviews became enormous, and we wondered how the majority of families are able to deal with a special needs child AND put food on the table.
We enrolled Bret at The Adaptive Learning Center, an inclusive preschool program, when he was 18 months old. When Bret was three, he began attending our local public schools in Cobb County, programs for which we will always be grateful.
When Bret was 5 or 6 he had his first seizure while we were vacationing in Hilton Head Island, SC. We had our first experience riding in an ambulance to the hospital. When Bret was 8 years old he had surgery to correct strabismus. By the time Bret was 10 years old his low muscle tone was causing his spine to grow at such an angle is began impeding on his lungs, and he had a spinal fusion. By this time, his seizures were becoming more frequent, with longer durations, and we began the use of medications to control seizures. Up to this point, even with all the issues going on, Bret was a happy child. While non-verbal and non-ambulatory, he always smiled and laughed; big belly laughs. He would raise his arms when he wanted to be picked up, and would snuggle with us at every chance. In the beginning, the medicines did control his seizures, but from the very start, his personality began to change. He smiled less, and laughed less. He stopped wanting to play, and preferred to simply put his fingers in his mouth and go to sleep. Then the seizures returned, but now instead of once a month it was becoming more like once a week. His medications were changed, his personality changed, but his seizures subsided. A few months later the seizures returned, but now they were in groups. Two to three seizures within a six hour span, and off to the hospital we would go. Change the med’s. Now when the seizures returned, he would have one gran maul, and five or six petit maul seizures in a day. Change the med’s. Each time we changed the med’s, Bret would experience new side effects. By the time Bret was 17, he no longer wanted to play at all. He almost never laughed or smiled. He was tired all the time. Then he stopped eating. In February 2014, Bret wighed 115 pounds. In July he was weighed at the doctor’s office: 111 pounds. In September 2014 Bret developed Pertussis (whooping cough). When he was weighed in the hospital, his weight had dropped to 92 pounds. He had stopped eating and drinking. While the hospital wanted to send us home with a nasal feeding tube, we decided it was time to have a feeding tube placed surgically. Interestingly, one of the medical options was a cannabis based drug called Marinol, which is used to increase the appetite; however, it was only available for use while in the hospital.
So here we are in 2015. I sold my interest in the printing business I had owned since 1980. My son is almost 19 years old. It is becoming increasing difficult for Angie to care for Bret by herself. While we have considered moving to Colorado in order to access cannabis oil, with the hope of weaning Bret off the pharmaceuticals that seem to do as much damage as good, we are not prepared to give up being close to our families and the support network we have built. It seemed until recently that medical marijuana was a done deal, a no-brainer; now we’re not so sure. The constitution protects us from cruel and unusual punishment, but families of special needs children are sentenced to a life of stress and heartache. As part-time employees of non-profits that support families of children with serious illnesses and other life challenges, we feel a commitment to stay in Georgia and fight for the rights of all those suffering needlessly. Our lives are difficult as it is. How cruel it is that some children have access to what amounts to a life saving medicine, while others must continue to suffer simply because they live in a different state.