Yesterday, Shari, Ashlyn and I went to the Down Syndrome Clinic at Riley Children’s Hospital. It was our first trip.
We want Ashlyn to receive the best care possible. And, Riley is a world class children’s hospital with a very good Down Syndrome Clinic.
But I was not looking forward to our appointment. I was pretty hesitant. As wonderful as they are, hospitals can at times feel like a “system.” Almost like an assembly line. I like hospitals. I don’t like the system.
As we enetered the facility I was guarded. It was surreal. When you find out that your wife is pregnant you never consider the possibility of walking through the doors of a children’s hospital. Never. Especially, not while pushing your child in her stroller.
Just by walking the halls of a children’s hospital you see things that break your heart. Before we left I started off my morning by reading and praying Matthew 5. As we walked the halls of Riley those words were ringing in my ears: blessed are the poor in spirit…blessed are those who mourn…Really?
We checked in and sat in a waiting area. There was a beautiful Asian girl, maybe 2 or 3, playing in the waiting area. She had Down Syndrome. She really made me smile. So beautiful.
Called back to our exam room, weighed, measured. Ashlyn continues to gain weight. Continues to grow. That is really, really good. Not gaining weight, not growing can be symptomatic of a heart issue.
The doctor who we saw was especially kind. Her first questions were about us, how we’re doing, and we had a lot to say. She empathized. Connected. Listened. Eye contact. Cared.
We worry about the future – what will Ashlyn’s life look like when she is 15, 25, 35? What will she be able to achieve? What won’t she be able to achieve?
The Dr. responded as best as she could. In short, we know but we don’t know. We know her future will look differently. We don’t know specifically how. There is no test to determine that.
She examined Ashlyn. For right now, Ashlyn is a pretty healthy baby for having Down Syndrome. No heart issues. Able to eat without a tube. Height + weight gain. Muscle tone that is good for a baby with Down Syndrome.
We’re incredibly thankful for that. I can’t imagine preparing for open heart surgery on a 3 month old but that routinely happens with Down Syndrome Children.
We continue to try and focus on ‘right now.’ So hard to do that. Especially when there are developmental milestones you want to see your child reach.
One of those milestones is smiling. Ashlyn had yet to smile. Kyla smiled at 4 weeks. The comparison game is a killer.
Toward the end of the appointment the doctor was looking and talking at Ashlyn. Ashlyn looker her right in the eyes and gave her a big smile. So cute. So encouraging.
Right now.
Stream of consciousness on what has been happening lately.
- I’ve been chewing so much gum this week that my jaw muscles are sore. No pain, no gain.
- My posting has (obviously) become more sporadic. I’ve always used this blog as a space to bring clarity to the often disconnected thoughts in my mind. But the combination of busy + the need to use as much energy as possible to write words too uncomfortable to share on this large of a platform has drawn me away from this space.
- I feel like I haven’t seen Kyla in a week. That bothers me.
- I drove between Lafayette and Kokomo a lot this week. It’s about 40 minutes on one state highway through the middle of nowhere. I don’t know if there is a fast food restaurant between Lafayette and Kokomo on that whole stretch of road. I only saw 1 gas station. It’s the definition of the sticks.
- The NWI District is blessed to have Dr. Lee Woolery as her leader.
- Ever since Shari and I ate at Blue Fin Bistro I’ve been craving sushi.
Post 2 of a 4 post series highlighting recent worship songs that have been helpful. At the onset, it has to be mentioned that this is in no way exhaustive. I’m limiting this to 5 songs per post. A plethora of worship music is available. These posts will just highlight worship songs that have found their way to my attention and I think are valuable.
Today we’re going to start with modern worship songs. Meaning, songs that were written in the latter part of this decade.
Here is the criteria I am using:
- The song needs to talk about God.
- If you can sing it to your girlfriend of boyfriend with a straight face it’s out.
- Scriptural references creatively used gets bonus points
- The melody should be memorable and creative
- It needs to be able to be sung congregationally
- If K-Love hasn’t ruined it by overplaying that is even better
“Words to Build A Life On,” Mike Crawford.
I’ve written before about this song. It is the most visited post on this blog. It’s epic in scope. The words are beautiful. Straight out of Matthew and the song moves the congregation to a confession.
Shout it from the rooftops
Let the trumpets ring
Sing your freaking lungs out
Jesus Christ is King!
Jesus is my Savior
Jesus is divine
Jesus is my answer
Jesus is my life
“How He Loves,” John Mark McMillan
Brian mentioned this song in yesterday’s comments. I first heard of this song when Northpoint Community Church sang it during their Easter services a few years ago. I’ve never heard it sung congregationally but the lyrics paint incredible pictures of the Kingdom and God’s love for us: if grace is an ocean we’re all sinking…so heaven meets earth like a sloppy wet kiss. While the song has been recorded by many people I prefer John Mark McMillan’s. It’s raw.
The Hillsong Section
I used to say that Hillsong was the Coldplay of Worship Music: anthemic, a tendency to be overproduced, hip, delay pedals, effects. But some of their songs are just so accessible for congregational worship. A few.
“Hosanna,” Brooke Fraser (Hillsong United)
A great worship anthem. The melody of the chorus is beautiful. And the bridge seals the deal.
Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me
Break my heart for what breaks yours
Everything I am for your kingdoms cause
The one thing I don’t get about Hillsong are the videos. Where are they? At a concert? A church?
“Saviour King,” Mia Feldes + Marty Sampson (Hillsong United)
Classic Hillsong. Soft first verse, soft chorus, build second verse + chorus, explode on the bridge. This song has been stuck in my head for months. I love how lyrically the song describes the work of God and moves the congregation to confess love and dedication. The killer lyric:
I love you Lord, I worship you
Hope which was lost, now stands renewed
I give my life to honor this
The love of Christ, the savior king
Lots of Hillsong songs worth a listen. A few more: Desert Song, Stronger, From the Inside Out
“Overcome,” Jon Egan (New Life Church)
An anthem. Crafted around the words from Revelation 12: they will overcome by the blood of the Lamb and the word of their testimony…The music serves the words in a powerful way.
Incredibly accessible and very singable melody.
Your thoughts?
My worship leader friend Brian is constantly writing and talking about how this is a special time in the life of the church because of a resurgence in creative musical worship. Brian’s right. Worship music has moved lyrically and musically beyond [insert bland song here].
Music written and used for worship has always been contextualized and is constantly changing. For Westerners, if you worshiped back in the day you would listen to Bach or Beethoven and never be asked to sing. If you worshiped way, way, way back in the day you might have some sort of chant. If you worshiped in the 70s-80s, Jesus music + praise choruses. I’m generalizing here but you get the point.
For worship music, the key (no pun intended) is asking three questions: who is Jesus, where do we live, and what time is it. Maybe I’ll write more on that later.
I’ve said all of that to say that there are some incredible things happening with music written for worship these days: ancient hymns finding new arrangements, modern hymns being rewritten, words of the psalms freshly spoken, the words of the biblical prophets are being rediscovered, the story of redemption being rearticulated…
This week I’m going to feature some songs that have profoundly encouraged me to worship. But before I start I’d love to hear from you:
- what is the best worship song you’ve learned recently?
Share them in the comments!
Kyla is a really nice big sister. Loves to lay next to Ashlyn. Loves for Ashlyn to “get her” or “tickle her.”
Ashlyn has been lifting her head for a while. That’s good. She is a sweet, sweet baby.
Great quote from Frederick Buechner:
The love for equals is a human thing – of friend for friend, brother for brother. It is to love what is loving and lovely. The world smiles. The love for the less fortunate is a beautiful thing – the love for those who suffer, for those who are poor, the sick, the failures, the unlovely. This is compassion, and it touches the heart of the world. The love for the more fotunate is a rare thing – to love those who succeed where we fail, to rejoice without envy with those who rejoice, the love of the poor for the rich, of the black man for the white man. The world is always bewildered by its saints. And then there is the love for the enemy – love for the one who does not love you but mocks, threatens, and inflicts pain. The tortured’s love for the torturer. This is God’s love. It conquers the world.
Amen.
A little window into a personal journey.
Ashlyn has Down Syndrome. Coming to terms with that is processing endless feelings, thinking endless thoughts, while trying to focus on the moment. She has Down Syndrome. She will always have it. No surgery, therapy, or hospitalization at Riley will remove it. It is hers.
We’ve searched, and still are searching, for the answer to ‘why.’ It’s elusive. So far ‘why?’ has no answer. Silent. Maybe forever?
Before April 30 reading the psalms was an out of body experience. Not now. I eat those words now.
‘Normal’ is being redefined. Before it was defined by appearance, development, apptitude, college, socialization, acievement. I’m not sure what it is now or if it exists.
I think I’m coming to discover that part of this gift I’ve been given is having everything be redefined.
The cool things about May 18:
- Shari and I were married on that day in 2002. An incredible day that marked the beginning of a lifelong journey. 7 years later I love her more. She is an incredible gift.
- On our 4 year anniversary, Shari and I found out that she was pregnant with Kyla.
- On our 6 year anniversary, we visited with Lafayette First Church of the Nazarene for the first time.
It is a great day. The greatest day of the calendar year.
Stream of consciousness style.
I think I felt this tired with Kyla. Maybe? If so, it is one of those memories eagerly forgotten. Every morning when I wake up it is like I O.D.’d on Nyquil. So maybe this is how insomniacs feel?
Regardless, it has been wonderful to have Ashlyn home. She is a really good baby. Eats when she should, sleeps when she should, and hardly ever cries. She looks exactly like Kyla when she was a baby.
Kyla has done pretty well with her. She is interested for a few minutes, gives her a kiss, and then begs us to watch her Elmo video (for the 10th time that day). She absolutely loves Elmo. What is it with that?
Shari and I still have our highs and our lows. We are incredibly thankful and blessed by the gift of Ashlyn that God has brought to us. That awareness is strong within us. Personally, Ashlyn is already teaching me many things about love, life, and how I view the world. I’m sure she will continue to do that and I’m thankful.
At the same time, we’re still trying to comprehend all that has happened in the past 10 days. Questions, wonderings, worries, all fill our heads. Perhaps the best way to describe this portion of our journey is similar to how other Down Syndrome parents have described it: we’re grieving and celebrating at the same time. And it’s a bit tricky to honor both of those experiences in the same moment.
We know, and we’re learning more daily about what it means, to trust God for everything. We’re certainly blessed to be surrounded by a great family, church family, and friends. We know those relationships are gifts from God.
I’m going to try to be as transparent as possible during this process. My tendency has been to be reasoned in what I say. But this isn’t the time for reason.
Lately I’ve been praying the psalms. And I’ve been thinking about a sermon I preached during Advent about the angel announcing to Mary that she was blessed and that announcement made her afraid. I’ve found some solidarity in that story. When I said “too often we confuse the blessing of God with comfort and ease” I didn’t know I’d need to hear those words months down the road.
Be blessed.
A photo and video of the big sister.
