Ashley's Story

She will leave fingerprints all over your heart


Different At Our House

Things are still different at our house. I'm not sure if I'll ever get used to sitting here on my couch on a Sunday morning as opposed to sitting on the pew in our church. Not because I believe that you have to be in church to have a relationship with the Lord, but because I think thats where you have to be to maintain a relationship with you church family. Things are just different.

Our struggle with going? Ashley Kate's health and level of abilities. What do we do? Nursery? Not appealing to me. I know without a doubt if she is placed in a nursery with other children she will get sick. Every little germ that strong immune systems fight off will jump onto her weaker one. We have been more than blessed with her when it comes to virus' and the like. I truly believe it is because she has very little exposure to groups of people and especially to groups of children. Nursery life is fun for children, but it is also a breeding ground for illness. On top of the whole ostomy issue and mic-key button issue. Honestly, it frightens us and makes us feel so guilty(and we are used to it and know how to remedy it) on the occasions when her button or feeding tube gets pulled out. I can't imagine how a nursery worker would feel seeing her scream in pain while stomach content flows from a hole in her gut. Not something I want to place on anyone else. Dave's dad accidentally pulled it out last weekend and I thought he was going to pass out. He felt horrible. It just happens. Then we have the whole ability/disability issue. Which nursery do you place her in? She doesn't creep, crawl, talk, or walk like the other 3 year olds. They would run over her! Then again she is a giant compared to the other babies in the nursery. Not quite a newborn at 3 years old and 28lbs. She just doesn't fit anywhere.

I think the best solution would be a cry room of some sort. Do they still have those in churches? I remember when I was younger our church had a room in the balcony that was sound proof for nursing mothers and their infants. They could see and hear the service, but yet they did not disrupt others when the babies cried or needed to be fed. I think that would be perfect for us. Dave or I or both(since worshiping together is what we want to do) could sit and tend to our noisy toddler(who is plenty noisy even though she doesn't toddle) and not have to worry about her being a distraction. Too bad our church doesn't have one, and I don't think it would be appropriate to ask for one to be built on our account.

So that leaves us sitting home on Sunday mornings, trying to adjust to our new normal, and wondering how we can remedy this hole that we feel in our lives. For now thats what we do. I just don't think placing Ash at risk is acceptable in order for us to stay in touch with our church family. I firmly believe that our relationship with Christ is stable even though we are not worshiping with other believers. Its not about that. Its about trusting Him, believing in Him, and repentance. I'm just saying things are different at our house and for now its still a little weird.


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