Saturday, May 20, 2006

Prayer Requests

Prayer - We get asked from time to time how you can pray for us, so here are some things that make our hearts heavy. Thanks for asking.

For me -- I am trying to be joyful in this, but it is hard when we have to do these "treatments" on Emily and she looks at you like, "why do you keep doing this to me," and cries a lot. None of it is new, but it causes me great internal struggle as I wonder if it is what God wants, and if so, why?

For Diana -- Peace and rest physically and spiritually while she spends countless hours day and night caring for all the details of a 4-year old and a special needs infant. I have no idea how she can keep up the schedule she does and it doesn't involve very much sleep. Pray that God will really show Himself to her in a very personal way while she carries so much weight.

For Annabelle - She is getting some counselling from a Hospice Chaplain. She has a lot of things inside that I am sure are stuck there in regard to Linnea and Emily. We talk about things all the time, but there are always those tidbits deep down that sort of mess us up when we have had such difficult things to understand. She is great and we believe God has some big plans for her. Pray that we will understand her needs.

For Emily -- Healing. If it is God's plan. But, even if it's not, we are praying that it will be. This is a tough area to tackle b/c it has become so unconventional among Christians and it is a shame. Pray that she will be comforted in the Holy Spirit while SMA takes it's toll on her muscles and all that that involves in the end.


Thursday, May 04, 2006


A little update on Emily -- Emily has been enjoying her ability to grab things and put them in her mouth. Her reach is short and she can't pick up much, but every once in a while she'll get something with those little finger and smash it right into her pie hole. She is loving Veggie Tales, just as Linnea did so much, and loving even more to be entertained by Annabelle pretending to sing hymns to her and occasionally trying to evangelize her. Annabelle's got a real Fire and Brimstone sermon that she practices on Emily every chance she gets. I trust the Lord has some good plans for that!

Lately we have began noticing that Emily's chest is beginning to show a little deformity. B/c she prefers her right side to her left when she is laying down, the weight of her growing body scrunches her little chest together a little bit, causing a small protrusion from her sternum, I am no Dr of course. This happened with Linnea, but on both sides b/c we would turn her regularly. Emily is a bit pickier about how she is laying and her left side make her cough a lot. So, we are having to figure out what to do to keep this protrusion small and hopefully get it to even back out with some "tummy time". SMA baby's chests get narrow b/c of, among other things I am sure, they are not getting the great exercise of inhalation that you and I get, so their chests narrow and their abdomens grow larger. This is the "bell shape" that is familiar to SMA savvy people. I didn't realize before that the size and shape of my chest is somewhat determined by my breathing. If you didn't breath with your lungs, your chest would probably sag a bit, or be narrower at least. Again, I am not Dr, so don't quote me on this stuff.

Emily is also getting longer. She is in the 50% bracket for length, which is good. She is in the 5%, however, for weight, also typical of children suffering with SMA. So, she is long and skinny and becoming more difficult to hold. She is outgrowing the length of our arms and that makes things difficult. She LOVES being held, so that means it is more difficult to keep her happy.

For the past 24 hours Emily has been sporting a pretty bad fever. This morning it was 103.7 F via her ear, but no other symptoms are accompanying this, so we are hoping that it is her teeth. She's got some pearls growing in her lower mouth and that is fun to see :), but not so fun for her I am sure. We just hope to keep the drool from pooling in the back of her mouth where it can be aspirated or harbor germs that could cause an infection. If you didn't already know, teething children tend to put St. Bernard's to shame with their drooling. OK - maybe it isn't that bad, but they could easily take some sort of prize... if there was one... for kids that drool. Anyway, I think Emily is enjoying her new teeth despite the pain the cause coming in. She just loves gnawing on carrots!!

People's Needs Recognized

So the gist of our experience in SLC was the fact that there are people out there that just need to talk about their troubles. It was really neat to realize this in our own circumstances. As I started a couple of posts ago... three kids came running up to me in the hotel lobby b/c they wanted to get a look at Emily. This prompted a neat discussion about life, death, your soul, heaven, hell, special needs, autism, etc. The mother of the three children was obviously pregnant and obviously loved kids. She has spent the previous weeks helping in the care of her dying mother, so many of these concepts were fresh in her mind, as well as her family's. We had a great time talking about how people just need a little education when faced with the awkwardness of an individual with special needs. Her insight came from years of teaching autistic kids... she has also written some songs about the difficulties of autism. If she visits my website I am hoping she will remember to send me some of her music (I should have written this post a while ago b/c I can't remember her name now. It will come to me...). The short of it is this, we were both encouraged b/c we took the time to be open about our circumstances, I would encourage others to do the same. Look for opportunities to share your story with others, no matter what that story is! There are millions, perhaps billions of people out there that need to hear another's story, b/c it can encourage them and show them something they may not otherwise see.

Later that day we were taking TRAX into town and decided to use the handicap ramp, something we had never done before. Low and behold there was a family on the ramp with a young man (18) who was born prematurely and had some physical and mental issues as a result. They seemed to love him very much and we launched into a great time of sharing about what life is like with disabilities. The mother also has cancer and is unable to get the medicine she needs, so she is just living with it. I couldn't believe what I was hearing and we often find ourselves in shock and awe of what other people have to go through every day; we usually find that they feel the same way about us! Their stop came up and we gave them a few Chick-fil-A coupons that we had on us for such an occasion told them that we'd be praying for them. Another example of a family that just needed to talk about their lives with family that understood, to some degree, what they faced on a daily basis. I hope that they felt as encouraged as we did.

God is so good to us and I pray daily that His goodness will seep out of me in search of people that need encouragement. I pray that he will use my uselessness to touch the lives of people that need to know Jesus.