Oct 24, 2010

Our trip

cutiepie on the airplane

looking at the airplanes

Manny and I got on a plane on Friday bound for Peoria, IL.  I got asked to come back to speak at a Conference.  Angel Arms Ministry hosted a conference for the caretakers.  They have this incredibly simple idea that every family should be able to attend church ... even if the children have special needs.  If you are not a family with a special needs child, the likely you're saying, "What's the big deal, don't all churches do that?"  But if you are a family with special needs kids, you likely know what I do and that is ... 90% of families with SN kids do not attend church because they feel unwelcome there.  (Very soon I want to write a blog about special needs ministries and the need for them in the Body of Christ.)
Anyway ... for this conference, I got to tell Manny's story ... the first time I got to tell that story anywhere.  I made it through this very emotional talk with only a few tears. 

I love doing funny, uplifting talks.  But this was not that.  It was hard, it was real.  I have doubted my decision many times but pray that people heard what they needed to.  I hope they left with "something". 

The trip itself was great.  Manny is a trooper.  He was very congested when we left and I was worried about his ears.  He can't suck a bottle, chew gum, suck a pacifier ... NOTHING to help his ear pressure.  But he was amazing.  And the only time he cried was when he was bored~!  So we took him out to the swing and he was great. 

On the plane ... extra seat
Friday night he was unusually grumpy and feeling a bit warm.  In the middle of the night he woke up screaming ... 104 fever.  And that was WITH Tylenol and Motrin.  His heart rate was well over 200 and his respiratory rate was 50 at one point.  So clearly, respiratory distress.  Yikes.  Scary.

Saturday the church volunteers made sure he was happy while I was busy with my keynote speech and the breakout session. 

And then were on our way back home.  Manny played for the first flight.  Then he slept the whole second flight (2 1/2 hours).  I know it's a miracle because he was so very miserable just before we got on the plane! 

Little Drummer Boy, during a breakout session

Saturday night was one of the worst nights he's ever had.  For hours he woke up every 5 minutes or so.  He has this blood curdling scream that just jolts you out of a dead sleep.  I eventually told Dan I couldn't do it any longer.  I'd done it for 2 nights in a row and needed some help.  He moved to Manny's side of the bed and took over.  So I was able to take about 3 hours of sleep.  I still heard him crying but it wasn't my responsibility so it was easier. 

We're praying tonight is better. 


  1. I am praying tonight is better, too, sweetie. If not, I know you and he will be off to the the dr. and we will pray through that, too.

    I am glad you were not too anxious about traveling with Manny to miss the conference. Your know where your help comes from and are not likely to forget it (that THAT, Satan)!


  2. Praying for a better night tonight!

    YOU may have made it through the talk with very few tears but those of us who heard it did not. There wasn't a dry eye in the place but it was such a blessing and to know that I was one of the hundreds (thousands?) praying for you guys even before we knew what we were praying for was pretty cool. It was like a behind the scenes tour of the last few months of your life!

    I sure hope Manny feels better soon, he was such a trooper, and have I said CUTE too?! Cuz he's soooooooooo CUTE!