Monday, April 26, 2010
NPR story on Williams Syndrome
Check out this spotlight story from morning edition on NPR that talks about the trusting nature of people with Williams Syndrome, kids like our Ben!
Monday, April 12, 2010
Is THIS Normal?
Well, today Ben went back to school and Jon is back to work. There is much to do: projects to complete, contacts to catch up with, staff colleagues to reconnect with, travel to prepare for and so on.
But here we are, back to "normal."
May our awareness of God be as keen in this normal as it has been throughout the exceptional!
But here we are, back to "normal."
May our awareness of God be as keen in this normal as it has been throughout the exceptional!
Friday, April 9, 2010
Ben and The Ginge
Here are some photos of Ben's birthday celebration at Children's Memorial Hospital, with entertainment by The Ginge!
OK, so it wasn't just for Ben's birthday, but how was he to know?!
OK, so it wasn't just for Ben's birthday, but how was he to know?!
Monday, April 5, 2010
Sunday, April 4, 2010
Easter
What a beautiful Easter day! Ben is home! Christ is risen! The sun shone brightly, and now comes soaking rain. What more is there to say? He is risen indeed.
Saturday, April 3, 2010
Friday & Saturday, waiting
Friday was a waiting day. Kim, Noah and Lydia came to the hospital since it was a school holiday. Jon, Noah and Lydia went for a great walk on a beautiful Spring day. We got over to the shoreline, walked in the sand, dipped our toes in cold Lake Michigan, collected a few small shells and stones, soaked up some sun, and breathed fresh air.
Noah went to the Family Life Center after we got back and was tutored in chess by a visiting volunteer. Lydia and Kim went to check out the thrift shop that's across from the hospital, and whose proceeds benefit the hospital.
Kim then settled in for the night while Jon, Noah and Lydia headed back to Elgin, just in time for some Easter egg decorating at church and then Noah slept over at his friend Jason's house.
Saturday has also come and gone, and we're still waiting on the coumadin levels to get high enough for Ben to come home. Kim's still at the hospital. Jon and Lydia slept in for once and did some chores around the house, and Noah played at Jason's. Lydia and dad had an afternoon out to the movies, where we saw "Last Song" starring Miley Cyrus. I thought we were in for a silly children's flick, but instead I ended up with tears through pretty much the whole thing. I guess it hit a little close to home with all the family dynamics and especially the storyline of father and kids.
So now it's time for rest. Tomorrow we get up early to celebrate Easter. We give thanks to God for life and for victory over death. This year the reality of new life is close to home.
May it be real to you as well.
Noah went to the Family Life Center after we got back and was tutored in chess by a visiting volunteer. Lydia and Kim went to check out the thrift shop that's across from the hospital, and whose proceeds benefit the hospital.
Kim then settled in for the night while Jon, Noah and Lydia headed back to Elgin, just in time for some Easter egg decorating at church and then Noah slept over at his friend Jason's house.
Saturday has also come and gone, and we're still waiting on the coumadin levels to get high enough for Ben to come home. Kim's still at the hospital. Jon and Lydia slept in for once and did some chores around the house, and Noah played at Jason's. Lydia and dad had an afternoon out to the movies, where we saw "Last Song" starring Miley Cyrus. I thought we were in for a silly children's flick, but instead I ended up with tears through pretty much the whole thing. I guess it hit a little close to home with all the family dynamics and especially the storyline of father and kids.
So now it's time for rest. Tomorrow we get up early to celebrate Easter. We give thanks to God for life and for victory over death. This year the reality of new life is close to home.
May it be real to you as well.
Thursday, April 1, 2010
Busy with not much of anything
Hospital stays really feel like they are amazingly busy, and yet here we are not doing much of anything except for waiting. The anticoagulation levels are improving, but not yet where they need to be to go home.
Ben's day was fairly active. He spent most of the morning in the family life center. Hmm. What did he do there? Watched a little of Stuart Little, watched dad draw a picture, hob-nobbed with the other kids and volunteers, did some drumming during "Jammin' with Jim," and played in the teen center.
After the center is was lunch and shower time, followed by tutoring, listening to music, a visit from Pastor Joel and then dinner. He was exhausted and fell asleep at 6:00 p.m.! Let's hope he stays asleep for the night, although I'm sure there will be interruptions: for blood draws, vitals, and an early morning weigh in. Additionally, the baby sharing the room is scheduled for surgery first thing in the morning, so that means no post-midnight feedings, which likely means a cranky baby!
Weather in Chicago was beautiful although quite windy today (surprise!) so Jon got out for a couple walks and a chance to take in the city from the eighth floor of the parking garage. Tremendous view of the city from that vantage point.
Sorry that I didn't get to lovefeast with our church family at Highland Avenue Church of the Brethren, but Kim had a solo with the choir so she took Noah and Lydia and I stayed in town with Ben.
We are getting pretty close to discharge. The blood thinners are closer and closer to their target rates, but my hunch is we're looking at a few more days. Go ahead; prove me wrong!
Blessings to you our family and friends for the dark journey of Good Friday and the bright dawning of Easter this weekend.
Ben's day was fairly active. He spent most of the morning in the family life center. Hmm. What did he do there? Watched a little of Stuart Little, watched dad draw a picture, hob-nobbed with the other kids and volunteers, did some drumming during "Jammin' with Jim," and played in the teen center.
After the center is was lunch and shower time, followed by tutoring, listening to music, a visit from Pastor Joel and then dinner. He was exhausted and fell asleep at 6:00 p.m.! Let's hope he stays asleep for the night, although I'm sure there will be interruptions: for blood draws, vitals, and an early morning weigh in. Additionally, the baby sharing the room is scheduled for surgery first thing in the morning, so that means no post-midnight feedings, which likely means a cranky baby!
Weather in Chicago was beautiful although quite windy today (surprise!) so Jon got out for a couple walks and a chance to take in the city from the eighth floor of the parking garage. Tremendous view of the city from that vantage point.
Sorry that I didn't get to lovefeast with our church family at Highland Avenue Church of the Brethren, but Kim had a solo with the choir so she took Noah and Lydia and I stayed in town with Ben.
We are getting pretty close to discharge. The blood thinners are closer and closer to their target rates, but my hunch is we're looking at a few more days. Go ahead; prove me wrong!
Blessings to you our family and friends for the dark journey of Good Friday and the bright dawning of Easter this weekend.
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