Tuesday, July 30, 2013

Fishing, Counting, and a Medical Update

The lovely Ann Voskamp had a blog post yesterday that I just had to share with you.

So many of us special needs parents are tired.  Worn out.  Exhausted.  We collapse into bed at the end of the day, only to wake up in the morning to do it all over again.

And again.

And again.


And the future can start to seem overwhelming.

And we can start to wonder if God even remembers us, let alone cares about us.

I always love it when I get a reminder, a little "refresher course" in God's great love for me.  And for Bird.

Just in case we're not Facebook friends, here's what I posted this morning:

Today, I am fishing yet again. And like the disciples in John 21, I am tired of the work and the long nights of catching nothing. I am tired of bloodwork and medical tests and crushing pills and medical mysteries. I am tired of cleaning toilets and doing laundry and mopping sticky floors. And there it is - Jesus telling the disciples to do it one more time, to cast their nets yet again, even though they have been empty time and time again. Jesus asking me to wake up and do it all over again. He is asking them to trust Him still. He is asking me the same. Peter casts and gets a net full of fish, 153 of them. He actually counted the fish. He counted to see what God had provided. And that is my reminder to count. Because even when it seems like Jesus has forgotten, there are at least 153 ways that show He has not. So today, I fish. I cast my net and I count. I write it down and I highlight in yellow. Because "it's a life that counts blessings that discovers its yielding more than it seems. The secret to joy is to keep seeking God where you doubt He is." 

Here's the link to Ann's blog post that I hope will refresh your body and soul this morning. 

And maybe even the next few mornings.

Medical Update:

Ryan and I have a phone call with Dr. Najjar tomorrow (Wednesday) at 11:30 Texas time to go over all the test results from Lily's stay at NYU.  Together, we'll come up with a new plan of treatment which might possibly require us to head back to NYC the following week.  We are still very hopeful and feel certain that Dr. Najjar has a good handle on Lily's medical issues and how to treat them.

Dr. Souhel Najjar is most definitely one of my "153".  He is counted and highlighted in yellow!  God has blessed him with incredible intelligence and the gift of diagnosing and treating what often seems hopeless.  God is using him in mighty ways to bring hope and healing to so many.  And I am so thankful God opened doors for us to see him.

I'll keep you posted on what's next for Bird!

Now get out there and have a great day, sweet ones!
The secret to Joy - is to keep seeking God where you doubt He is.  AnnVoskamp.com

Tuesday, July 23, 2013

Update from NYC

Most of you are probably wondering how the trip to New York City went.  What we thought of Dr. Najjar.  What Dr. Najjar thought of Lily Bird.  And what is next for us.

Well.... it's hard to put into words all the thoughts spinning in my head.  In fact, I'm still processing so much information that I haven't been able to put anything down in writing quite yet.

But my husband has, thankfully.

So for those of you who want either a quick summary or for those of you who want the nitty-gritty details of what went down in The Big Apple, I'm going to send you right along to Ryan's blog, www.ryanrush.com because so far, he's the only one of us who's been able to put pen to paper (or fingers to keyboard) and get everyone updated.

Click here for the link.

One more thing - please know how much we appreciate each and every single one of you for your prayers, good thoughts, kind notes, and words of encouragement.  Honestly, we have never felt more prayed for in all our lives.  What a blessing to share this journey with you.  

And we don't mind one little bit if you keep right on praying!
Say Amen  www.say-amen.blogspot.com

Friday, July 12, 2013

A Story of Prayer

Ryan and I just returned from New York City where we spent the week with several Austin pastors and their wives.  While there, we attended the Tuesday night prayer service at Brooklyn Tabernacle. It was an incredible evening that is very difficult to put into words.

Ryan wrote about the service on his blog today so I just thought I'd "steal" his words.  So read on to hear about God doing big things in the life of a little girl.

I have to tell you an amazing story of God’s Hand at work.

This past week, Lana and I were in New York with several pastors to discuss a movement of prayer in the City of Austin - and of course, we were also praying for the City of Austin!  We came to NY to do that because of the Brooklyn Tabernacle, and their longstanding Tuesday evening prayer service – a place in the inner city where thousands gather for this mid-week opportunity to seek God together.

If you haven't read Fresh Wind, Fresh Fire, Jim and Carol Cymbala were called to this dying church forty years ago.  With no funds, few members, and as new leaders with no formal training, all they knew to do was cry out to God, and the Lord began to move. The Brooklyn Tab has over 20,000 members today and is a beacon of light in the midst of the inner city. I have never witnessed so many so passionate and expectant for God to move.  As you can imagine, part of the reason for their fervency is the desperation of living in a very dark place.  Their church, in fact, is in the heart of an area inundated with drugs, gangs, crime, and prostitution.

Today, they worship in a renovated theater that seats 5,000.  On Tuesdays, every seat is taken by people coming to pray.  The service begins at seven, and people begin to trickle in at 5PM to pray at the altar. Our primary reason for coming to New York was to sit in on this service.

This trip was planned months ago.

But there’s more to the story…

Two weeks ago, we received a long-awaited call from a Pediatric Neurologist we’d been trying to see for months for our little girl Lily (also known as "Lilybird" or “The Bird” to those who love her most ☺.)

Lily Bird

This amazing six-year-old had a brutal first year of life that included two major surgeries.  Lily was developing normally when, around age two, she began to regress – losing her ability to talk and largely sinking into her own little world.  She hasn’t yet recovered.  After years of research and appointments, we believe that Lily has a viral infection in the frontal lobe of her brain that is stalling her development.

Dr. Souhel Najjar is one of the most widely sought after specialists in the world, and books have been written about his treatment of rare brain viruses.  You can follow this link to see a story on the Today Show about another one of Dr. Najjar’s patients, and if you click on the “Brain on Fire” story to the right of that one, they show a clip of the doctor himself.    Just to get in to see this man was incredibly difficult.  But God answered our prayer. And on top of that, after he finally said that he wanted to see her, we were offered an appointment on the 16th of July - the very next week after our Brooklyn Tabernacle trip.

But there’s more to the story…

Back at the Brooklyn Tabernacle, when Pastor Cymbala heard we were coming, he invited us to meet with him before the service to update him on what was happening in Austin. It was a pleasant half-hour conversation, and right at the end fellow Austin Pastor David Smith mentioned that Lana and I would be back in the City next week with our daughter.  Jim graciously asked for more details so he could keep her in prayer.  We were glad to share and of course grateful for his sensitivity and compassion.

The prayer meeting began with people lining up for one-on-one prayer with deacons and prayer leaders at 6:00.  Hundreds of people lined up - extending to the very back door.  It was incredible to witness the expectation these people had for God to move!  They somehow prayed for everyone in line – without rushing anyone – and finished with about five minutes to go before the service started.  It began with some incredible worship and praise before Pastor Cymbala came to the podium.

Prayer Meeting

Just being reminded of the power of prayer when we were on the verge of such an important appointment for Lilybird was worth the trip for me.  It was as if the Spirit of God was telling me, “I am big enough to bring you all the way to Brooklyn and remind you that I delight in answering the prayers of my people.  I have heard you.  Don’t lose hope!”

The reminder of God’s presence in such a clear way would have been reason enough to be in New York this week.

But there’s more to the story…


When Jim Cymbala came to the podium, the first words he said were, "I would like to ask Lily's Mom and Dad to come right here to the front.  I believe the Spirit is calling us to pray specifically for this little girl in Texas tonight."  He repeated Lily's story to the congregation, asked his pastors to surround us, and asked everyone to cry out to God for Lily.  And for fifteen minutes, 5,000 people prayed for a miracle.  Pastor Cymbala wept for our little girl.  People of all ages, races, cultures and backgrounds cried out to God for Lily by name.  For Lily in Texas to speak.

The service continued with more music, specific prayer requests distributed on cards to everyone in the audience (who then divided into pairs to intercede), and a brief message from the Book of Acts.  Toward the end of the service, Pastor Jim reminded the crowd about Lily.  He then shared that he realized Lily's family wasn't the only one in the room with an urgent need, and he asked others in crisis to come to the altar for prayer.  At least 500 filled every space at the front and we sang and prayed.

As hundreds gathered at the altar, I couldn't help but think that God had set aside a time just for The Bird to be prayed over.  And He did it a mere subway ride away from where she'll see a doctor next week that we didn't even know about when we planned this week's trip.  I won't presume to know what God is up to.  But a God who is great enough to bring all of these things together is certainly capable of saving His best for last, and we're expecting Him to do something great - whether He heals Lilybird completely or has something better in mind.

We can’t wait to see what God has in store!

And there’s more to the story…

Serving as a pastor in Austin, Texas is unlike any other place on earth.  The Lord has connected many of the pastors in our city with deep and lasting friendships across improbable denominational and racial lines.  Some of my best friends are people whom the world might see as “competitors,” but that’s hardly the case.  We long to see the people around us know how much Jesus loves them, and it’s a thrill to share that message together!

Last year, I mentioned in passing during one of our meetings that one day I would love for these friends to pray over Lily.  One of them picked up on it and set a date for this to happen.  And on a Sunday evening after everyone had wrapped up the ministries at their churches, they gathered in South Austin at Bannockburn to surround our girl and pray for her.  Witnessing all of those men and women of God calling out in unison for a breakthrough was one of the highlights of my life.  We actually came together on another occasion to pray for her a few months later, and when they received word about our upcoming appointment, my friends set a date for prayer this Sunday evening – the night before we take Lily to NYC.

These pastor friends have allowed me to choose who to invite to these gatherings, and Lana and I decided on both previous occasions not to announce these prayer times to our church or to anyone else.  We kept it quiet for three reasons: we wanted our pastor friends to be able to focus on prayer without thinking we had an “audience” watching the prayer, we didn’t want to get so many in the room that not everyone had the freedom to pray as God led them, and (probably the primary reason) I am sensitive to the fact that our church is filled with urgent needs of hurting people.  I don’t want our congregation fixated on the problems of their pastor’s family, or to bring special attention to our needs.

But as I have heard from so many people this week who received word about what’s happening in Lily’s precious life, those reasons feel silly.  I was reminded that, while we’ll pray for healing and insight, the focus of our times together is not on our family at all, but on the majesty of Jesus.

So I want to invite you to join us in prayer this Sunday evening with some very special pastors from around Austin.  We’ll be praying for a little girl that has stolen my heart and grown my faith.  And we will give thanks to a God who cares more than any of us for The Bird.

We will gather at 6PM in the Worship Center at Bannockburn in South Austin – at the corner of William Cannon and Brodie Lane.

We realize that there is still more to the story. God is already using one six-year-old girl to show Himself faithful and connect the hearts of people in prayer.  I can’t wait to see what the days ahead will bring.

He is able!

Positive Thinking

Tuesday, July 9, 2013

The Hardest Part (and the Blessing) of Leaving Town

Since the Bird came along, we don't travel quite as much as we used to.

It's not necessarily because the opportunity never presents itself.

Rather it's mostly because it requires so much preparation.

And when I make a list of all I need to do just to get away for a few days, I'm so tired from making the list that I just opt to stay home instead.

Sometimes I'm lazy like that.

But a few months ago, Ryan and I were invited to go to New York City with several pastors and their wives and it was a chance we just couldn't pass up.  So I spent this past weekend prepping the house for my in-laws to come hang with the Bird.

Because Lily is on a special diet, feeding her requires some planning.  No ordering pizza or grabbing burgers for this baby girl.  I try to make it as easy as possible by having plenty of what she can eat on hand, as well as writing menus for each day along with a list of available snacks. 

I write down her daily schedule and tips for making mornings and bedtimes run more smoothly.

I fill up her weekly medication tray with the pills she takes both mornings and nights, as well as directions for crushing and administering the meds.

I make sure I have a current medical release form giving my in-laws permission to seek medical treatment in the case of an emergency, along with copies of our insurance card.  I list the phone numbers of a few sweet friends who are happy to come relieve my in-laws if they feel like they need a break.

I triple sheet Lily's bed in case she has a middle of the night accident to make changing sheets easier.

I lay out her clothes.

And on it goes.

Here's a shot of my fridge, stocked and ready:

And here's a shot of my kitchen cabinets, with everything I carry around in my head in order to keep Bird in her routine:

And here's "the whole picture" - the notes, the stocked fridge, the stuff laid out for the first morning:

Looking at all of this just reinforces yet again that I can never die.  It is simply not an option.

But it also reminds me how lucky I am to have my family and friends who are willing to take on the challenge of staying with Lily so I don't become a hermit and never go anywhere again.  

It definitely takes a village to raise our Birdie.  And gracious, have I got a good one.

I am so blessed.

Friday, July 5, 2013

NYC - See You Real Soon!

Remember this post?  The one about the neurologist in New York City?

Well, you may have seen on Facebook, but we received word last week that Lily has officially got an appointment with Dr. Souhel Najjar and we are beyond excited!

Dr. Souhel Najjar is the doctor who solved the medical mystery of Susannah Cahalan, whose story is told in her book, Brain on Fire.

Want to get a peek at Dr. Najjar and hear the fascinating story of how he took a girl considered to be schizophrenic by all other doctors, doomed to a life of possible institutionalization and psychiatric treatment and proved it was actually a rare, and treatable, medical condition?  Click this link to see the short video and the doctor who will soon be facing his next medical mystery, this cutie patootie right here:

So. We'll be heading to New York City this month.  And just like you prayed for us to get the appointment in the first place, we'd really appreciate your prayers yet again.  And we'll keep you posted on how it all goes.

Have a fantastic weekend!

*If you clicked the video link, make sure you select the video captioned "She went mad for a month" rather than the one showing 3 people sitting on a couch.  That way you can see Dr. Najjar!

Tuesday, July 2, 2013

Summer Reading

One of these days, I'm going to get around to revamping the blog just a bit to include a few new features.

And since so many of us around here love them, I want a page dedicated specifically to books.  See those red words at the top there, just under the blog title?  I would add another one called, 'The Stacks" where all of us book nerds could come together and share what we're reading.

But until that day of blog revamping comes around, you'll just have to settle for the occasional post about books.

Which is exactly what we're talking about today.

From top to bottom, here's what's currently in my stack:

Mourn Not Your Dead by Deborah Crombie - Book 4 in the Duncan Kincaid/Gemma James Scotland Yard detective series.  Though not my favorite mystery series, these are still enjoyable if you like a good "whodunit".

The Gift of an Ordinary Day: A Mother's Memoir by Katrina Kenison - I'm not done with this book yet but oh my word.  It's like the author read my mind and heart and then wrote it down for all to read.  This says so much of what I'm feeling at this exact moment of in my life.  I love, love, love this book.

Quiet: The Power of Introverts in a World that Can't Stop Talking by Susan Cain - I'm excited to read this because I've heard so much good stuff about it.  And since I consider myself and one of my daughters to be an introvert, I'm thinking I'll gain some understanding and insight into our personalities.

The $100 Startup: Reinvent the Way You Make a Living, Do What You Love, and Create a New Future by Chris Guillebeau - Since Ryan has a bit of an entrepreneurial spirit, the girls and I bought him this for Father's Day.  But he's talked about it so much that I'm about to start reading it myself. The idea of taking something I already love to do and turning it into some additional income is definitely intriguing.

Daddy's Gone A-Hunting by Mary Higgins Clark - Another good old-fashioned mystery by one of my favorite authors.

Stuck by Jennie Allen - This is actually not a book but a Bible study that I'm doing with two of my friends.  If I were totally honest, I've felt stuck for quite some time now.  Stuck in fear.  Anger.  Discontentment.  And I'm tired of being stuck.  So I'm hoping this study gets me UNstuck - or at least on a path towards it. 

So have you read any of these? If so, what did you think?  Got some must-reads on your own summer reading list?  Please do share.

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