Barbe’s Story – Part I

Barbe Neeson – Parent Navigator, Stone Soup Group

So here I am pretending I know what I’m doing in writing a “blog”, and to be completely honest, I have no idea what I’m suppose to say. Nor have I ever written “outside-the-box” (well, there was a couple poems for the magazine “Seventeen” many moons ago).

People often ask me, how I got in to working with families who have children with disabilities, I say I come by it naturally. My youngest child, Chris, was diagnosed at the age of 7 with Tourette’s syndrome, Neurofibromatosis, Epilepsy; and I believe ADD was thrown in for good measure.

When I was five months pregnant he started having seizures in utero, he was born seven weeks early via c-section. By the time he was three, things got a bit strange. I tried to talk myself into thinking that it was just because he was a boy, and life would be different than raising two girls. Man, oh man was it different!

photo2 (2)My son growled, he mooed, he hiccupped, he clicked his tongue and he whistled in his sleep. Again, I chalked it up to being a boy and being overtired. His pediatrician said “he’ll grow out of it, with boys, you just don’t know.”

So life proceeded. Well, kind-of sort-of, but not really. Everyone else’s life proceeded, ours stayed the same: chaotic, frustrating, lost, and on autopilot basically.

At that time, there was no pediatric neurologist in Alaska, so we saw an adult neurologist who was as behooved as I was, if not more. He sent us to Mincep Children’s Hospital in Minnesota, a specialty hospital geared towards children with seizures and unknown neurological disorders. We were there eight weeks. My son tethered to wires on his head and chest, along with about nine other children. Oh, and they all wore helmets, for protection. It was quite the sight and cautious walking with all these 200 foot wires lying around. Parent’s rooms were attached to their child’s; there was access to cooking, a library, TV, games, and many conversations with other parents. I didn’t feel so alone there, but still felt unsure. And I was worried about my girls, who I had left with a friend in Alaska.

photoFinally, a firm diagnosis! We knew what it was, what we could try, what might work, what might not. Medication would help, I learned how to help, and we both learned how to deal with the symptoms; though it took many years. However, we made it, some days I didn’t know how or who would survive the storms, but we all did. My only regret is that we did not have access to care here in Alaska so my son and I could be near my girls, who also needed me during this time. But more about that later…