A few weeks ago Jess and I went to a conference in Orlando for families dealing with disabilities. There were many different hour long courses covering a wide range of topics, from tax planning to how to emotionally cope with having a disabled child. For most of the day Jess and I went to separate meetings, trying to get to all of the classes we thought would be useful. It was the first time we had gone to anything like this and I have to admit, at times it was awkward. I didn’t grow up around people with disabilities and I have not had a lot of opportunities to meet and interact with people with disabilities in my life.
The last session of the day, we decided to go to a roundtable for cerebral palsy (CP). We didn’t know what to expect, but it sounded like a good opportunity to learn from other people dealing with the same disability that we were. By the time the session started there were about 50 people in the room. Most were parents of kids with CP and some even had their kids there. What first struck me was the vast array of handicapped equipment being used, mostly to help the person get around on their own. This is something Jess and I have talked about; what kind of assistance Mattie is going to need as she grows and we become unable to simply carry her everywhere.
This class was a bit different than the others. Instead of a person teaching a topic, this class was more of a “meet and greet” with other people living and dealing with CP. The organizer of the class had us form a big circle with the chairs in the room and prompted everyone to talk amongst ourselves. A couple quickly stood up and announced that they were passing around a notepad and for those who were interested to add their name and email address to the list. In the next couple of days they would be sending out a mass email with everyone’s information in case you met someone you wanted to keep in contact with. Jess and I added ourselves to the list as it made its way around the room.
The group quickly broke into several conversations with Jess talking to a couple of women next to her while I introduced myself to a young couple sitting next to me. About half an hour into the session, I looked across the circle and noticed a middle aged woman in a wheelchair sitting by herself. One of the difficulties of being the parent of a child with CP is mentally dealing with an unknown future. Will Mattie be able to walk? Will Mattie be mentally handicapped? Will Mattie ever have a job? Live on her own? Fall in love? Get married? Not having been around people with disabilities, I had no idea if someone with CP can have an expectation of any normalcy. This seemed like a great opportunity to see what kind of life someone with CP lives. I got up, walked across the room and sat down next to her. She politely smiled as I introduced myself and asked if she would tell me her story.
Her name was Anabella and she was born in a rural part of Colombia. There were difficulties during her birth and when she started missing some developmental milestones, her mother traveled to Bogota´ to consult a doctor. She was diagnosed with CP when she was one. At five years old, she took her first steps. She first learned to walk with a walker, then a cane, eventually becoming able to walk on her own for short distances. She had graduated college with a degree in industrial engineering. At 25 she moved out on her own, becoming completely independent. She is married. In her early thirties she had an accident while grocery shopping. She fell and broke her leg in 2 places. It took her over 2 years to teach herself how to walk again, however, the pain from doing so led her to living in her wheelchair. Anabella spoke about her life with a big smile on her face. She said that people often asked her how she was able to cope and keep such a positive attitude about life; she admitted the question confused her. To her, she was lucky to have the capabilities she had and to be living such a fulfilling life.
Since the conference I have thought a lot about Anabella. She gave me a picture of what a successful life could be for Mattie – what I could hope for. A few days after the conference I brought her up in a conversation with Jess, saying that she would have been such a great role model for Mattie. Jess and I laughed as I suggested that Anabella didn’t really exist and wasn’t really in the room that day – that I had imagined her because I needed to. Jess lightheartedly assured me that she had seen her there too.
A few days later we received the mass email from the couple detailing everyone’s name and email. At the end was a note asking if anyone had Anabella’s contact information. Apparently she had added her information to the list, but her email address was incorrect. They had tried every reasonable variation of her address but were unable to contact her. Sometimes people come into our lives at opportune moments and give us exactly what we need, only to disappear as quickly as they arrived.
Hope For Mattie 