Chance was born with cerebral palsy and Dandy-Walker syndrome (variant form), so he’s been wheelchair-bound his whole life and has cognitive deficits. He has very scattered skills and is childlike in many ways. While his functional and developmental skills are very low (5-7 years) in comparison to his current chronological age of 35, his expressive language skills are much higher. He has savant-type skills with words; languages; and memory, particularly names of people, colognes, cars, and music (lyrics and/or the name of the singer across many genres).
When Chance was about 6-7 years old, his parents divorced and not too much later, his mother moved out of state. Chance was devastated and spent months crying and having wild meltdowns because he missed his mom and, of course, had no comprehension of why his life had suddenly turned upside down.
I had known the family for about six years at that time, and I remember hearing about what was going on then, although, I was not personally involved at the time.
As time passed, Chance was able to settle back in and, for the most part, get back to his chipper self, as he calls it. Due to his neurological issues, he was not able to fully regulate his emotions, so if very stressed he would occasionally have an outburst but was able to get himself back under control.
After his mom moved away, she did maintain some phone contact with him but there was no visitation due to the distance. In time, he settled in and the outbursts and meltdowns subsided. After three to four years had passed, she came back to visit. He had a wonderful time with her for several days, but then it was time for her to go back home again. He felt the pain of her leaving all over again.
This cycle was repeated throughout his childhood with a few years going between visits and at times inconsistent phone contact as well as promises made but not kept. He would always go through a sad spell after these visits or during the weeks or months with no calls or after the disappointment of looking forward to something that had been promised but didn’t happen, but he was still able to pull himself back up, restabilize, and get on with his little life.
During his elementary school years, I babysat him off and on. He never had any outbursts or meltdowns with me. If overstimulated, he would just do some shrill squealing and bounce himself around. I would say that he was a little tightly wound and wore his heart on his sleeve. I learned how to work with him calmly and patiently and loved having him in my care. He was very tender-hearted and eager to please.
So here’s where our story begins.
A few years after Chance’s dad and mom divorced, my husband and I divorced too. I was still babysitting Chance off and on for Paul, and sometime later, he expressed an interest in taking our friendship to another level. I was actually very surprised when he mentioned it. It had never crossed my mind. I told him I didn’t think that was a good idea because of the pressures we both dealt with having special needs kids and how that alone was often a strain on a relationship.
My daughter had very complex special needs, was also wheelchair-bound, and had a degenerative neurological disorder that was always fatal. That’s a lot to bring into a relationship, and I just didn’t want to get emotionally involved with him only to have the stress of dealing with all these issues tear us apart. I began to pray earnestly for a wife for Paul and a mother for Chance.
Paul continued to call off and on when I wasn’t babysitting for him, and we always had enjoyable conversation and got on well together. He would periodically ask about us having a relationship. I began to pray seriously about it. I was still very unsure it was a good idea, but in early 2006, God gave me very clear confirmation that this was his plan. So we moved forward, and by Labor Day weekend that year we were engaged.
Chance was the sweetest little guy. He loved everybody he met and everybody loved him. He loved going out to malls, restaurants, parks, festivals, and family get-togethers. He was very outgoing and lit up the room with his sweet, funny presence.
When we went to the mall, Chance seemed to know the names of almost everybody that worked at the stores, and they knew him too. He never met a stranger. If he didn’t know someone’s name he always asked and wanted the whole name, not just the first name. He is very much into details!
Looking back, I can see that he did deal with anxiety, but that was before anybody was really talking about anxiety, so when he had outbursts, people perceived it as more behavioral versus emotional. Even so, it was at pretty low levels and for the most part he was managing very well without any medication.
As Chance got older, even before Paul and I married, he would have some occasional big meltdowns when really stressed out but was still able to regain his self-control and overall continued having a very cheerful outlook and disposition.
Just a few weeks after we were engaged, Paul had some cardiac issues and had to have quadruple bypass surgery. I withdrew Chance from school, enrolled him in the school close to where I lived, and moved him in with me for about 8 weeks during Paul’s surgery and subsequent recovery. I lived about an hour and a half away from him at the time.
Although Chance had spent a lot of time at my house during the years I babysat him, it was very difficult for him knowing his dad was in the hospital and being uprooted and having to deal with so many changes at one time literally overnight. He had a few big meltdowns during his time with me. I had never seen him like that before, but I totally understood what was going on with him. Aside from that, he really did well, and I was proud of him knowing what a trying time it was for him.
In December of 2007, I married Paul, and became Chance’s mom. Chance was 18 years old at the time. I always teased Paul that I fell in love with Chance before I fell in love with him. Chance and Paul were both quite charming, loving, and funny. Adding Chance came quite naturally to me and we settled in nicely.
After Paul and I married, Chance really enjoyed having Krysten, my daughter, and me there all the time. (He and Krysten developed an absolutely precious bond!) He could sleep in his own bed at night in his own home instead of going to the babysitter to sleep while his dad worked nights, and his life became a bit more relaxed for him. He really enjoyed having a mother on a daily basis again.
We quickly noticed that when I had to take Krysten to the medical center in Houston for doctor appointments, which was an all-day trip, Chance would be unsettled, and often his teachers would notate in his folder that he had an “off day” at school. We realized he was dealing with issues relating to abandonment, and I noticed that when anyone was “out of place” he got unsettled, so I started reassuring him that I would be back any time I was going to leave the house to run errands or go on appointments. He was always very happy and relieved when I returned and would say to himself repeatedly, “See, I told you I’d be back,” as if it were me saying it to him.
After Paul and I married, Chance’s mom reached out and worked out a plan to come and visit Chance again. It had been another 3-4 years since her last visit. For some reason, after that visit she started making yearly visits, which on the surface seemed like it would be a good thing for Chance to have visits more often.
However, after the third or fourth annual visit in 2011, Chance reacted differently than he had when she left after visits in the previous few years. He would sit on the couch off and on all day long and repeatedly say to himself, “It’s okay. Mama will be back. It’s okay. She’ll come back.” This went on for weeks. He spent more time sitting on the couch talking like that than he did playing with his toys or listening to his music. He was in a deep depression. Then the meltdowns started. If something stressful or upsetting happened, he would start screaming and tearing stuff up. He could no longer control his emotions.
I wasn’t a fan of psychiatric medications, but I knew he needed some help because he just couldn’t hang on by himself anymore. I talked to his dad about it, and although he didn’t want to consider it initially, he did see that Chance needed help and agreed. I called his doctor and we got him started on one. Within a few weeks and with a little tweaking, his meltdowns subsided, but he had also started having excessive burping. He was having very big burps all day every day.
His doctor wanted to explore other avenues to be sure we weren’t missing anything, so she sent us for a swallow study since he has neurological issues and swallowing difficulties can come with that. She also ordered an upper GI. These tests didn’t turn up any real issues, and the GI doctor told me that it seemed to be more of an emotional issue than a GI issue. That was the first I knew that anxiety could cause excessive burping!
During this time, my husband, Paul began to have some more medical problems and spent several days in the hospital. His kidneys were failing, and we were told he had to start dialysis. There were a lot of changes going on, but Chance seemed to be taking them pretty well in stride.
Through the years, he had grown pretty well accustomed to accompanying his dad on doctor appointments when Paul didn’t have anyone to watch him before we were married. And as more hospitalizations were happening, I would pack up the kids and snacks and we would go to the hospital. Believe me that was no small feat pushing one wheelchair and pulling another one all the way from the parking lot to the hospital and getting on the elevator. I know God was with me! But Chance really enjoyed going. He got to eat snacks and his dad’s leftovers and met tons of people, which was great for him being the extrovert that he was.
A few months later, towards the end of 2011, Chance’s mother’s father, who lived nearby, had some serious health issues and was in the hospital. She flew in to see him and take care of business and Paul took Chance to the hospital to see his grandfather. There were a lot of people there, and Chance, of course, didn’t understand the severity of his grandfather’s health problems, and he seemed to take that quick, unexpected visit in stride. His mom told him she would come the next day to take him out to eat, so he woke up and waited expectantly for her to come, but it didn’t happen — no call and no visit. Those incidents of promises made and broken were very confusing and unsettling to him. He did better than I thought, but I could tell he was upset. The meds held up though, praise God for that!
Sadly, Chance’s grandfather passed away by the end of 2011 or very early in 2012. After that, his mom stopped calling. Chance noticed, of course, and Paul would periodically text her to see why she wasn’t calling Chance and would let her know that Chance missed her and wanted to talk to her. She would say that he wouldn’t understand but that she couldn’t.
It wasn’t long before Chance started having big meltdowns again, even bigger than the previous ones. I noticed that he would start obsessively talking about his mom or half sister and then not too much later would have a complete come apart. He had a big picture of them on his dresser, and I realized that he would sit and look at the picture and then start thinking about them and couldn’t get his mind on anything else, and then he would just lose it.
Due to the Dandy-Walker syndrome, he has some characteristics of autism. Obsessive thoughts is one of those things that he deals with. When something gets stuck in his head, he can’t shift the gear, so to speak, to get it unstuck and on to another topic.
I had reached out to the doctor again, and we had to increase his medication. I also decided to try removing the picture to see if I could keep his mind from going there in the first place. Both of those strategies helped, and he finally started settling back down.
Six months had passed since he had talked to his mom, and he had just begun to settle back down when she reached out and wanted to resume phone contact. She and Paul worked out a trial plan of her calling him for a quick check-in at a time of her choosing on a weekly basis for a month to see if she could be consistent before he would agree to allow her to resume contact with Chance.
Sadly, she missed the very first trial call and didn’t text Paul to let him know anything or to reschedule, so Paul finally said that he was not willing to allow contact to be resumed because Chance just couldn’t deal with the inconsistency anymore. He did better with zero contact than he did with inconsistent contact at this point.
Chance continued to be settled in pretty well with his medication and was enjoying his day program and going on outings. Our days were busy and filled with appointments and home dialysis for Paul. Krysten was having some GI issues that were concerning as well, so I had her at the doctor and ER quite a bit. I had also moved my mom in during 2010 to take care of her. She had colon cancer surgery in early 2012 and had complications and almost died. She had to have a colostomy and had gotten so weak that she became bedridden. She spent a few unsuccessful weeks at a rehabilitation center but didn’t do well, so I just brought her home. It was much easier to run things smoothly with everyone at home!
Things were hectic, but it was our life and became our normal. Our home was filled with lots of love and, amazingly, lots of laughter!
To be continued …