Church and Families with Specially Challenged Kids #4
I write today’s post holding my breath. Because, again, I don’t want anyone to think parents of children who are disabled want sympathy.
But sometimes they can use help. So let me share four stories (and there could be so many more!).
Story 1: Marti O
The first day we walked into Highland, Marti O’Rear, the children’s minister, met us with her smile that can light a room. She said, “Ok, let me have her. When she’s here, she’s mine.” (Funny, I tear up a bit as I write this—21 years later.) She wanted to be sure that Diane could attend class and the assembly without having to take care of Megan. (For those who maybe don’t know, I was the church’s preacher. I got there at 6:00 and was busy until early afternoon.) Marti knew that our care of Megan was around-the-clock, that we got very little sleep, and that we needed help on Sundays and Wednesdays—but wouldn’t ask. I’ve had several parents of specially challenged children tell me that they have just given up on trying to attend Sunday assemblies because it’s too hard. The easiest place of all is home.
Marti had a team who worked with our daughter. They learned how to incorporate her into classes; and they learned how to give her special attention when she needed to get away for a bit (translation: when she started pulling everyone’s hair). As Megan’s health deteriorated, this team went through training to learn how to provide the care she needed.
What can I say? It helped us? Too mild. It blessed us? Yes, but not enough. It saved us? Bingo.
Story 2: Don B
As Megan’s health deteriorated, life became more complicated. The routine was 24/7 care: percussion treatments, oxygen, g-tube feedings, meds, etc. We wore down. And with the medical complications, she was no longer able to go to school often.
She continued having bouts with aspiration pneumonia which would send her to pediatric ER. Each stay could run up to tens of thousands of dollars. We tried to convince our insurance carrier that just a minimum of home nursing care—which would be a fraction of the cost of one stay in ER—could help keep her out of the hospital. Our case manager said to Diane, I kid you not: “If you were a better mother, you wouldn’t be needing this help.” I know, it sounds like something out of a Grisham novel. But it was our life. We rarely slept, we tried to keep Megan (and two sons!) well, and I tried to keep all my other responsibilities at Highland going. And on top of all that for a long, long time we fought our insurance company every step of the way.
Until Diane went to her prayer group that evening and burst into tears talking about what this case agent from BC/BS had said to her. It just so happened that one of the women in the group was married to a lawyer who was connected to people in high places in Austin (translation: Gov. Richards).
The next morning we got a call from a man who was very eager to provide whatever help we needed. He said that we were being assigned a new case worker who’d be on our side. Home nursing care began shortly after that. (Of course, this was only a few months before Megan’s death. It would have been nice a couple years earlier. But later was better than never!)
Parents of children with special challenges often finding themselves “fighting the system.” They are doing just what they ought to do: being advocates for their kids! They often meet resistance from insurance companies, school administrators, parents of other children at school (who complain that all the “special attention” is taking away from their son or daughter’s education), etc.
What Don did made life a little easier. But even more, it reminded us that we weren’t fighting for Megan alone. Our friend, our brother, was fighting for her, too.
Those at your church who have children with disabilities need other advocates. And let me say the obvious: they don’t need to fight the same battles at church!
Story 3: Clark and Marci
My mom (and dad) took care of Megan a week every year so we could get away. It was a sacrificial gift that kept our marriage together. Of course, it was an act of love. Megan was her granddaughter. But it was exhausting and, in her last years, complicated. (I remember the call from my dad in the middle of the night saying they’d had to rush Megan to ICU where she was on a ventilator.)
But there were those other 51 weeks. Among the many people from church who helped us were Clark and Marci. They went through training to be able to care for Megan overnight. For the last year of year life, Megan spent a whole 24 hours with this couple she loved about once a month, allowing us to . . . wait for it . . . sleep! (Also, to reengage with the boys and with each other.)
Story 4: Dickie and Becky
There were so many times in the middle of the night when we went knocking on the neighbors’ door. They knew what it meant: we were rushing to the hospital, and we needed to drop the boys off. It was up to them to figure out how to get Matt ready for school and to football or basketball practice, and to watch Chris until we could work out the next step. They always—always—received the boys eagerly, no matter what time it was. They became Chris’s “other parents”!
Like the Hebrews writer . . . “What more shall I say? I do not have time to tell about. . .” Kay, Stephanie, E, Gary, Maria, Judy, Vicky, Beth, Ric, Lauren, Lindy, Jayma, Bob, Suzetta, etc. (It’s dangerous to begin this list, because, again to borrow from the Hebrews writer, “there were others.”)
But these were the people who surrounded us. Even then, life was challenging—as well as exhaustingly wonderful. But I can’t imagine having made it without them.
So . . . if you have a family at your congregation who has a child or children with special needs and you’re wondering what you could do, ask. Tell them you mean it. Be prepared to push a bit. Without being pushy, of course. Let them know that you’d like to assist with meals . . . or doctors’ visits . . . or bills (in some cases) . . . or babysitting . . . .