OUR STORIES: Amy D.

January 20, 2018

 

"I'm bearing my soul, hoping for even one parent who understands my pain."

 

 

Our son will be 18 years old in March. I knew since he was two months old there was something not quite right. It took me months to get a doctor to even listen to me. He is our first born and new moms get a bad reputation for being panicked and over protective so I was ignored. 

Finally, at 8 months old, we started early intervention. We also started our search for answers. Specialists--genetics, neurology, orthopedic, etc. who ordered blood tests and MRI's and CT scans and spinal taps. All came up negative. At two, he saw a specialist who said he was mentally retarded (remember how long ago this was-- terms were harsher). At three he was diagnosed with seizures. Soon after, given the label PDD-NOS which allowed us to get specialized Autism therapy in our state of Wisconsin...

 

At seven, we moved him to a school that only has kids with disabilities. It was the best move we made for him. He was happy, had friends, was loved and cared for. We were told answers might never come as to what he had. We lived our lives and loved him for who he is and the fact that he made my husband and I better parents (two more boys followed Brysson) and he made us better people. And we accepted the fact we might never have a true answer.

In the last couple months, as we prepare for our guardianship application for when he turns 18, we began talking in more depth about his future. He can't live on his own as his gross and fine motor ability is so limited, he has one word and Very limited conventional communication. But we were working on backup plans in case something happens to Brian and I. We planned for Brysson to outlive us by many many years. And for those years to be similar to how he lives now.

And then three weeks ago we got the results from his genetics testing. It was a long shot. Our last testing was six years ago. All negative. But not this time. This time we are told over the phone we have an answer. We schedule an appointment two weeks later to find out what exactly he has. I ask not to know until we meet face to face with the geneticist. In those two weeks, I am so relieved. We HAVE an answer! 17 years of wondering if I did this. Was it something I did when I was pregnant! Something I exposed him to when I was nursing or when he was an infant. Pesticides? Vaccines? Radon? No. Nothing I did, no decision I made caused his severe delays. Relief was all I was feeling. We had an answer.

Then we met with the geneticist. His diagnosis--BPAN. A lengthy conversation followed with the geneticist saying he'd never seen it before. He knew little about it. He gave us things he'd printed off the internet and we were sent home. And here I sit three weeks later. Feeling like someone punched me in the gut! I was okay with who my child was. We have accepted him for who he is. He has worked so hard to attain the skills he has. And now I'm told that not only will he probably not outlive me, but he will lose those hard-fought skills, and deal with pain and confusion as to why his body is betraying him as he deteriorates.

This is so unfair! Why is this happening to him? He never got the life he deserved in the first place and now he is going to struggle even more? I believe knowledge is power and I know it is better to know so we can fight and help him live the best life he can. But three weeks ago, I didn't look in those beautiful blue eyes of his and cry because I know what is coming in the future.

We will persevere and get to a point of acceptance, but not now. Not for a while. Now I just wish I could rewind to a month ago when I didn't know what BPAN was.

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