Just and Loving?

It’s tough to ‘keep the faith’ when one experiences a lot of negative things in their life. And often it seems like the negative things just keep piling up and up. You know, the thought that a lot, if not most, believers have at some point in their lives – ‘Why does God let bad things happen to good people?’

When I have had those moments, I tell myself to just trust that all that is happening is part of God’s plan and to just believe that there is a purpose to the turmoil. But, it gets very hard to remember and believe that when the bad things happen to an innocent child, and especially hard when bad things continue to happen over and over again through no action of that child.

For instance, children like mine and others with severe disabilities did not ask to be born they way they were. It was through the actions of their birth parents – drinking, drugs, no prenatal care, etc. – that their lives were determined. Innocent children who had no say in their future…

I can perhaps accept that at some spiritual level by going back to having faith when it seems God has a plan. What I can’t accept is when bad things continue to happen to these innocent children. Wasn’t it enough they were born with their disabilities – why must they be afflicted with other negative things beyond their control?

For example, these vulnerable children are subject to stares, bullying, exclusion and a host of other actions by people who ridicule them or think of them as less than ‘normal’. The parents of the children must battle every step of the way to ensure their children receive appropriate educations when teachers often ignore or exclude them, or just don’t believe they have any ability to learn. Or, there are the professionals (and that term is used loosely) who insist you prove over and over that your child really does have a disability, disabilities like deafness or blindness that seem nothing if not obvious. These children have to endure bus drivers and aides who treat them like animals, people who equate a physical disability with a decreased capacity to learn and understand, and neighbors and sometimes extended family members who act as if that child has something contagious. People speak about these children, not to them. They support them without befriending them. They suggest interventions and treatments to ‘cure’ them or make them more ‘normal’. They are very often treated less like human beings and more like creatures to be contained, trained, and locked away.

This is where my faith begins to crumble. It’s like kicking someone when they are down. These children bear enough of a burden from their disabilities – why must they further bear the burden of cruel or unenlightened people? Why does a merciful loving God allow that to happen, and especially allow it to happen over and over again?

These thoughts have invaded my mind even more now that Christmas and an increased spiritual environment are upon us. I don’t have any answers and I wish I did. I wish my faith was enough to relax my soul, but it’s not. I wish, no, dream, for a blast of positive into the lives of children who have lived primarily in the negative.

I want to believe in a God that can turn all this around – I really do.

Churches Musn't Neglect The Disabled

(Photo courtesy of Suzy Parker, USA Today)

This article from USA Today sums up everything I have tried to say in the past, but it does a much better job than I. Long time readers know that we have had a very difficult time finding a church home. I firmly believe that is because of the unique and severe disabilities my children have. I have yet to find a church home, including the Catholic church in which I was raised, that is willing to welcome amd include us in their congregation. The article linked below is well worth your time to read, but my favorite quote from it is:

"The fundamental question, disability activists say, is less what is in your congregational budget than what is in your heart."

Churches Musn't Neglect The Disabled

Saintly Hypocrisy

In the wise words of my friend, Jane - "Yes, God is Love... whatever you do to the least of my brothers... let the little children come unto me.... Hypocrisy is nondenominational anyway."

Check out the story about a young man named Adam Race (pictured to the right) for an explanation of her comments:

Mom fights Church Ban on Her Autistic Son


And here are some other blogs I have written on this subject. Just for the record, my family still has not found a church to welcome us…

In Nomine Patris et Fillii et Spiritus

Still Searching

Knights in Red and Yellow

"Thanks to the efforts of Father Michael J. McGivney, assistant pastor of St. Mary’s Church in New Haven and some of his parishioners, the Connecticut state legislature on March 29, 1882, officially chartered the Knights of Columbus as a fraternal benefit society. The Order is still true to its founding principles of charity, unity and fraternity." - (from the Knights of Columbus website)
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I'm sure you've seen the people wearing the bright yellow and read aprons standing in front of stores like Walmart, Target and grocery stores. For years, I have read the message on their aprons, "Providing Help to the Mentally Retarded", and for those same years, I have been annoyed by the words.

So imagine my surprise this past Saturday as I parked and walked into Walmart. There were the red and yellow aprons, yet now they read, "Providing Help to the Intellectually Disabled." If they would make just one more small step and have the aprons read "Providing Help to People with Intellectual Disabilities", I'd throw them a party!

Thank you, Knights of Columbus.

Still Searching

Last week I spoke to the person in charge of disability issues for my Catholic diocese. I've written before about trying to find a church that was welcoming to my family, and about my failure to find that. So, I was encouraged when my oldest daughter's behavior counselor gave me the name and phone number for the person at the diocese.

I spoke with Nita, a mother herself of an adult son with significant disabilities. I was encouraged, sure that she would understand the struggles I had been through. And while I believe she does understand to a degree, the phone call didn't leave me with a strong belief that my struggles would end.

Nita suggested two churches near me, and she was very anxious to list all the positive points about each. But when I explained Ashley's disabilities, her need for a sign language interpreter who could do tactile sign, and that I wanted Ashley to receive religious instruction, I heard the pause in her voice.

I've found that many churches believe they are accessible by the mere fact of having ramps and an interpreter at the front of the church during services. Those accomodations are indeed commendable, but they are not enough. My daughter cannot see an interpreter at the front of the church. And, I don't believe she needs to just sit in church during the service. I want her to have religious instruction. I want her to find the peace and comfort I have found in my religion. And, after attending Chancellor's funeral last week, I was even more convinced that she needs to find a faith that will sustain her during life's most difficult times. I want Ashley to understand that when I die, I will be waiting in Heaven for her. I don't want her to just think I deserted her. At this point in time, she would not understand, and that breaks my heart.

Surely a church must exist that has figured out how to instruct people with intellectual disabilities. I want to believe that there is a church that will welcome my family as well as provide religious instruction for all my children. Am I expecting too much?

Dave's Animals

I wanted to write a moving Christmas Eve post today, but after reading Dave Hingsburger's Animals post, I realized that not only could I not write anything more moving that that, I also knew that his piece needed a bigger audience. Something about the setup of Dave's blog makes it impossible for me to link to a specific entry, so I will repost it in it's entirety here. Thank you Dave, and Merry Christmas!!

Animals

It became the first of many. The pastor at our church once referred to me, not kindly, as 'endlessly creative'. The Sunday School had come to me to ask if I'd consider writing a play for their Christmas pagent. I didn't hesitate for a second. This began a tradition of the Sunday School having an original play for four or five years running. As a result the congregatin watched as the pulpit was turned into a space ship and they watched as aliens from Mars came and asked the children questions about Christmas and how the Children tried to make the Martians understand that Christmas was about the baby Jesus. It was fun being given this opportunity. But how do you top Martians and space ships?

The next years I borrowed from myth. Somewhere along my journey of growing up, I was struck by the myth that animals can talk - once a year - on Christmas eve. As a child I tried to imagine what the animals at the stable would say. Now here I was an adult getting the opportunity to write the words. I finished the play, gave it to the Sunday School teacher, and waited. She called me a day or two before the performance and said, "The kids are really into this play this year. They loved the spaceship and aliens one but this one is very special. They even have asked the minister if they could bring a real dog to add to the atmosphere. I think you are going to be pleased she said.

Pagent day and we had a big crowd. I wrote for the local paper, a monthly column on faith issues, and I'd mentioned this play in my column ... several had come to check it out. It began with the animals slowly coming to speach and usng that speach to complain, cow telling horse "For all these years you've been crowding me here' pig telling dog, "You've gotta do something about that breath of yours." Then the horse saying, "We're talking and all we are doing is complaining, shouldn't we really talk to each other." At that point the animals are asked if it would be OK for a couple to spend the night. She is pregnant.

Then they all go on about why they don't want to help humans. Humans use them, disrespect them, why should they do anything for the humans. "I'm going to be bacon in a few weeks and they want my bed!" "They ride on my back all day and they expect me to give up what moments of peace I do have." Oh the animals weren't all that fond of the idea. Mary and Joseph and their trusty dog (they'd have had a dog) are making their way down the aisle of the church towards the stable as the animals protest and complain.

Something happened then. The complaints started to become adlibbed. I hadn't written enough dialogue, Mary and Joseph (and trusty dog) we only halfway down the aisle. So the kids filled in. The tenor changed. parents sat in the audience as their children said lines like, "They don't hug me enough ... They make me feel like I'm always in the way ... I get frightened when I have to wait alone at home after school ... These children weren't acting now. They had been given voices and were using them. Parents sat rivitted, I saw no anger on any face, I saw love and concern, but mostly I saw realization. Their kids had been given the power of speach.

Finally Mary and Joseph arrived at the stable and the words became mine again. Many asked gently if the animals could spare a bit of room. They all backed up and the holy family huddled around and the animals surrounded them with and offered them warmth and protection. By morning they'd lost their speech again.

It had gone very very well. At coffee everyone was talking about the play, no one was talking about the moment that children got speech. Everyone acted like I'd written the words. I called the Sunday School teacher a day or two later and she told me that all the parents said that they had heard their kids and every one of the families had thanked her for that moment.

For me, it was a moment of enlightenment too. Understanding that having speach isn't the same as being heard. That they call it the 'power of language' for a reason. That those who are powerless have voices too.

As one of the children ad libbed, "And you know the baby Jesus is going to need you to pay attention every now and then."

Amen to that.

Holiday Month - Christmas Day

Next year I want to do Christmas differently. While the commercialism associated with the spiritual celebration has always bothered me a bit, it is indeed very easy to get caught up in the over-the-top decorations, the store sales, the TV shows and ads, and the overall hype of the holiday season. I have tried to shift my family’s focus to the spiritual celebrations, but I have usually been unsuccessful. But now that my children are all old enough to have set their Santa beliefs aside, I think the time might be right for a change.

Next year we will be celebrating Holiday Month for the entire month of December. On December 25th we will celebrate Christmas Day, a day for our spiritual celebrations. We will shift our gift giving away from that day, and we will open up Holiday Month for gifts. The rules are simple. Each family member can present a gift to another family member anytime they choose during the month, with the exception of Christmas Day. They will still be encouraged to make the gift giving a surprise, something to be anticipated and awaited. When someone is ready to present a gift, we will all sit together so we can oooh and aaah over it, and the receiver doesn’t have to wait until Christmas Day to play with/wear/enjoy their gift.

We always put our Christmas decorations up Thanksgiving Weekend, so those will be at the ready for Holiday Month. We can still enjoy traveling around town to see the tacky lights, watching special movies and tv shows, getting caught up in the shopping crowds if someone wants to do that, and we will make our holiday cookies and snacks early so they are available all month. But when Christmas Day arrives, our eyes and hearts will lift to the spiritual. We will continue the tradition I started when my oldest child was born of having a birthday cake for Jesus. We will visit church and sing our thanks for both the Holiday Month and for Christmas Day. Our Christmas Day will be joyous but with a joyousness that doesn’t reflect the more commercial aspects of the holiday.

I have discussed this new plan with my children, and while I believe the thought of receiving gifts all month was the main selling point, they all agree we should try it. So, check back with me in a year, and I will give you an update. In the meantime, if anyone has other ideas to separate the commercial and the spiritual aspects of Christmas, I would love to hear about them.

In nomine Patris et fillii et Spiritus Sancti

I’ve been trying for 10 years to find a church that would welcome my family. I know it sounds odd that I haven’t had any luck in those 10 years, but it’s true. It sounds really odd to me also.

I was raised in the Catholic Church. Friday night brought fish for dinner, and Sunday mornings meant church. As my teenage years approached, the Catholic Church approved conducting mass on Saturday nights, and my parents switched to that so we could sleep in on Sundays. While I probably grumbled about having to attend mass, I know I found a comfort in it – a realization that there were forces greater than myself, forces I could turn to in times of distress. That comfort has accompanied me through the many tribulations of my life, and is a peace that I continually still turn towards. Sadness overwhelms me, however, that I have not brought my children to that same peace and comfort.

I’ve visited Catholic churches, Baptist churches, Presbyterian churches, non-denominational churches, and several others without labels. The visits have played out the same regardless of the doctrine of the church. We arrive as a family – two children in wheelchairs, two walking. Jessica is friendly and outgoing but doesn’t understand that exuberance does not always have a place in a house of worship. Corey drums his ADHD-inspired head beat on the backs of pews or benches, bringing looks from the other church-goers of “Can’t you control that child?” Ashley is just Ashley – loudly vocal, fidgeting on the scale of Paul Bunyan, and with an overwhelming curiosity that leads her to touch, taste, and otherwise examine every surface around her. I can usually count on about 5 minutes before one of the “proper” church-goers turns to me and suggests I take the children to the nursery. But, there’s a problem with that also.

Nurseries are for babies and very young children. My children are teenagers. While Jessica would be very happy to interact with 4 year olds, my attempts to instruct her in ways appropriate to her age would be undermined. Put Ashley in a room with toddlers, and in no time one of the young children would be hurt because Ashley is the size of an adult and is blind. She can’t see the small children standing in front of her as she mows them down. And like Jessica, Ashley needs to be with her peers.

The next suggestion I usually hear is Sunday school. Oh, how I would love for all my children to attend Sunday school. But until I find a church where someone can both communicate in sign language with Ashley and assist her with orientation and mobility, not to mention helping both her and Jessica with activities of daily living (eating, toileting, etc), Sunday school is not really an option.

So there’s the rub – my children are not wanted in the church during service – they are not wanted or cannnot be accommodated outside the service – and I can’t leave some of them home and take the others. I refuse to believe however that a church that can accommodate us as a family doesn’t exist. I am, though, very tired of looking. My children have experienced enough rejection in their lives and should not have to experience it in a church of so-called Christian people. While I would really like to hear from other parents like me who have solved this problem, for the time being we will be worshipping in solitude. And, I hope I can provide enough of an example for all my children that they, too, will find the comfort that I have found in God.