Thirty-four years. That's how long I have been changing diapers. There is no end in sight. Every night I listen for my daughter crying in the night, as she is occasionally unable to sleep. Usually I get up with her four or five nights each month. In the morning, I will start her bath water and guide her to the bathtub, lift her eighty-five pound body into the tub and give her a bath. She will splash happily for a while until I lift her out, give her a massage and get her dressed for the day. Then comes breakfast feeding and the day begins!
I did not ask for this life. I am not special and chosen by God to care for this "angel from heaven." I do not know what her true cognitive abilities are, but if she has the capability to understand at all, she would know that she is a sinner in need of grace, just like me.
When Bethany was born, she was a little pink thing and the midwife immediately noticed that she had a tongue-thrust. Little were we to know how important a problem that would become. Soon we knew that she could not suck very well, and she screamed with colic almost constantly. A feeding specialist was recommended to us, and the misery began. Since I was homeschooling my older three children (the oldest was eight), I had to drag them to the doctor's office on almost a daily basis. We carried our school books so we could keep some semblance of normalcy. Bethany was diagnosed with "Failure to Thrive," but the doctor still was trying to make sense of her symptoms. She knew other things were wrong.
Finally, when my daughter was about eight months old, her doctor gave up and sent us to another specialist. Based on three of her symptoms, he diagnosed her with Beckwith Wiedemann Syndrome. That was actually good news, because the research showed that most children with that syndrome outgrow their physical problems and live a normal life. We soon learned that Bethany was not "most children." Unfortunately, the diagnosis meant many trips to the doctor and expensive ultrasounds performed every three months to check for kidney problems. Even though Bethany did not have enlarged kidneys, the main symptom of Beckwith Wiedemann, she still had to have the ultrasounds until she was eight years old. By her first birthday, we could no longer get insurance for her, so we had to scrape together the money for all her medical expenses. This piled even more family stress on us, and we all had to make sacrifices for our little daughter.
When she was three, a special education program was recommended for us, and we gave it a try. Our little one did not adapt well to school, even with me in the room. She screamed and threw temper tantrums and nothing interested her or calmed her down. The head of the program, who desperately wanted to help us, told me that Bethany was a mystery. I heard that a number of times from education experts. I did not blame them. That is how I felt too. Mostly, I felt like I was part of a zombie apocalypse--or would have if I had known about zombies back then!
I felt alone, and perhaps my husband did too. He was busy with work and his schedule involved traveling, so we didn't really have time to sort through our problems. We muddled along, taking one day at a time. I wish I could say that I turned to God in my desperation, crying out to Him and seeking His face, but I didn't. It was all I could do to keep house, homeschool, and take care of Bethany!
I am reading Total Truth by Nancy Pearcey right now. I am learning that America highly values the individual over community, and has devalued family, small organizations, community in church, etc. As I think back on my experience, I know that I missed community. We had almost no help from anyone. My parents had moved away from their parents, so I did not grow up in the constant presence of grandparents, and we did the same thing. We moved all the way across the country. Looking back, I wish we had lived closer to family where we would have gotten more support. However, it was God who brought us to California, and I don't know if it is right to even wish this!
We were active (and still are) in our church. My husband was and is a deacon, and we both taught classes, participating in almost every event. Unfortunately, the nursery workers had too many children on their hands, and Bethany could not handle the noise. She was soon kicked out of the nursery. I attended church as much as I could, sitting in the back and moving to the restroom when she got too loud. My time with God's people was important and necessary to me. After a while, I gave up and stayed home.
A few years later, another family with an autistic child started a little class for our two children and a few others who were severely handicapped. We took turns watching each other's kids, and were able to lead fairly normal church lives for a while. It was good to talk to someone going through the same thing who was dealing with similar pain. We enjoyed several years with faithful teachers taking over care of our children during their teenage years, and that was a blessing!
I say the above to mention that the church as our community was a help, although we could have used much more support and counsel at the time.
Somewhere in all this, I became very angry with God. I realized that Bethany was not getting better, and I felt stuck. I could not see any hope for a normal life. For a year I ignored God and did not crack open the Bible. When I tell people about this dark time in my life, I see shock and judgment register on their faces. I do not care. It is part of who I am.
When I read the Bible, and remember the stories I learned through the years I know others have felt similar pain. Moses spent forty years in the wilderness before God called on him. He missed out on going in the promised land because of his anger. Elijah won great victories, but felt alone and afraid. God met him with a still, small voice. David felt abandoned by God, but he was a man after God's own heart. Peter failed, but God still loved him and used him.
Yes, I did come around and return to trusting God, accepting my place in life and loving God's word. I can't say when, I just know it happened. God met me in my hard place.
As I contemplate my experience, I think of it this way: When sin came into the world, God's creation was cursed. Bad things happen as a result. Our bodies get sick and decay. Genetically, our bodies experience more mutations and fail. Something did not go right with Bethany. I don't think God chose for things to go this way, but He allowed it as a consequence of sin in general. When Jesus healed the blind man, He said the man had been born blind to give God glory. I can't understand the reasoning behind bad things happening, but I can know that God will get glory from it.
So today I count my blessings. Even though my life is much different than I imagined it, it is still good. I have been blessed with good friends, and some have helped financially and with gifts in dark times. My other children live lives that honor and please God. It is my belief that they are a little more caring because of their sister.
We have been blessed to be a part of NACD and to know Bob Doman, who was the first person to explain Bethany's problems and give us hope. We are privileged to have made friends with ladies and their families who have loved on Bethany and given me a break from her daily care.
It is a pleasure to hear Bethany laugh and squeal and call "Mom" or "Dad." She is able to connect our names with our persons, and that is good. It is fun to see her stop and look at the plants and want to touch them. The simple things of life are good.
A friend who had suffered a great loss, posted the article linked below about grief. It caused me to think about my own pain and grief and my frustration with platitudes. I don't get upset about platitudes anymore because I know people are just trying to figure out the reason in their own minds and help in whatever way they can. I may not agree with what they say, but I smile and move on.
Almost everyone goes through difficult times. No matter the problem: illness, cancer, pain, heart problems, a broken relationship, a lost friendship, the death of a loved one--especially the death of a child, it is not pleasant. The loss is always there. It takes time to recover, and it is never forgotten.
I have often played "what if," imagining that if only I had done this or that differently, Bethany would be better. Recognize that the person in pain often feels guilty already. Don't judge! It is good to exercise compassion for those who continue to grieve. As the article says, it is helpful to just be there. I would say that prayer is a great help as well.