"When darkness veils it's lovely face, I rest on His unchanging grace." ~Edward Mote

A couple of years ago, Tullie started mimicking people.  We’d raise our hand.  She’d raise her hand.  She was trying really hard to copy just about every simple gesture that we would do.  

One night we were sitting at dinner with a friend who popped in from Massachusetts for the evening.  Dinner had just wrapped up and we were still talking at the table.  He had leaned back in his chair and put his hands behind his head relaxing while we were talking.  A few minutes later we look across the table at Tullie.  She’s sitting in her seat with her hands behind her head listening to our conversation.  We all start laughing, she got embarrassed and gave us her shy, cute smile.

Around that same time she started watching people at church and she would raise her hands during worship when others would.  Mostly just mimicking what she saw.  At the time, I had thought, “That is so sweet!”

But tonight, at church, I was holding Tullie and we were singing, “Amazing Grace”.   She looked me in the eye and started repeating each word she understood. Grace.  Sound.  Meeeee.  She was so intent on wanting to know the song.  I started smiling at her.  She ate it all up!  In the middle of the song and a few songs after that, she’d shoot her hand up in the air, just worshipping.  Tonight, it tugged on my heart and made me feel lucky to have this wonderful, innocent, worshipping little girl in my arms.  And I really think that she was worshipping.  She was pretty intent on it.  Trying to say the words to the songs and putting her hand up when she wanted to, not because of everyone around her. 

I’m thankful to be Tullie’s mom, but tonight I saw Jesus in her and His glory.  Seeing her praise Him.  Tonight I was thrilled to be Tullie’s mom.  Oh, how I love that sweet girl.   She is an amazing asset to our family, and I also hear that she’s a wonderful friend.  Kids LOVE her.  A friend sent me a note tonight that said how Tullie was her daughter’s friend.  And, well, that just warms my heart.  I love that!  I love that our friends see Tullie for Tullie not identifying her as the girl with Down Syndrome. 

Tullie-Wullie,  you are loved!  Your are dearly, dearly loved.

“In Him we have obtained an inheritance, having been predestined according to the purpose of Him who works all things according to the counsel of His will, so that we who were the first to hope in Christ might be to the praise of His glory.  In Him you also, when you heard the word of truth, the gospel of your salvation and believed in Him were sealed with the promised Holy Spirit, who is the guarantee of our inheritance until we acquire possession of it, to the praise of His glory.” Ephesians 1:11-14 (emphasis mine)

I’ve struggled with hope.  Hoping that my circumstance would get better.   And also feeling like they never would.

Tullie came home on oxygen when she was six weeks old.  We were under the impression that she would be on oxygen for about a month and then she’d be done.  A month went by, we went to the doctor and then we were referred to Children’s Hospital to their pulmonary clinic.  We visited pulmonary clinic once a month for 10 months.  During that time, her oxygen was turned up, her heart had been stressed out a couple of times (which it healed on its own), and she was on oxygen for 24/7 for 10 months.  

Before going to each appointment, I would think, “This is it.  This is the one.  We’re going home with no oxygen.”  Each time I left, I left in tears.  My hope was becoming wrapped up in not having oxygen in the house anymore.  Thinking that somehow if the oxygen was gone things would be more “normal”.  I felt like Tullie is unique enough why add this oxygen to her face?

When I was on bedrest with Eli all we had was hope.  With each day that he stayed in the womb there was hope.  For three weeks we had hope.  The day he passed away I knew that my hope was in Jesus, but that seemed too far away.  I felt hopeless.  Helpless.  Sad.  Empty.

Tullie had been off of her oxygen for a month or so and they wanted to do a sleep study to see if she would need her oxygen at night.  I thought, “That’s not a big deal.  She’ll be fine.  She’s fine during the day.”  They called a couple of days later, saying that they wanted to see us and that she had to be on her oxygen immediately.  I was a wreck.  I thought we were done with this.  Come to find out she was on oxygen at night until she was 3 1/2.

There were a lot of times during those three years that I felt hopeless about something, but somehow I wrapped myself up in that oxygen.  Putting in this place that once it’s gone there will be reason to hope.  I know it sounds so silly, just as I write this.  Ridiculous really.   It felt like the only thing that would eventually end. 

In November 2008,  Tullie had a sleep study and I didn’t hear back from the doctors till December regarding the results.  That’s a long time considering in July the study had gone horribly and I heard from them the next day.  The day Lisa called,  the nurse practitioner, she said, “Tullie doesn’t need oxygen anymore.” Me, “What? Really?”  Lisa, “Yeah.  Really.  We’re all surprised.”  I couldn’t believe it.  It was a total no oxygen dance around here!  We were thrilled!  I called my parents to share the news and come to find out my dad was not well.  We didn’t know what was wrong and my mom ended up calling an ambulance and Ellison and I were on a plane back East the next morning.  My oxygen party was short lived. 

As I looked back on it a couple of weeks later, I thought that it was so interesting how God would overshadow the day that Tullie didn’t need oxygen anymore with a family emergency.  The oxygen wasn’t nearly as important as I made it out to be.  It was consumed me and where I placed my hope. 

The verse at the top of this post struck me “…so that we who were the first to hope in Christ might be to the praise of his glory.” (vs. 12)

I was not hoping in Christ.  During that time I felt like God was good to everyone else except us.  I wasn’t remembering where my hope was suppose to lay.  Because all of my hope was laying with physical things, like oxygen that were going to fail me.  My only hope is in Jesus.  What He has done for me and where my eternity lay.  When my hope is in Christ it is for His glory.  All of our earthly things are going to fail us.  There is no security in them. 

Our only hope is Jesus and certainly not oxygen or the lack of.

I got an email from a friend a couple of weeks ago and she asked if I thought God had given Tullie Down Syndrome on purpose.  It wasn’t a random question.  It was something that we had been talking about for awhile.   I didn’t respond to her for a few days, because I knew that I had to get my thoughts in order before I responded.  The moment I read her question, I knew my answer, but I had to think about it for awhile. 

It was one of those things that when I think about it and I don’t hear anything else around me.  Kids may be screaming, something falling, husband’s talking and I’m off in Lala Land thinking about something deep.   I was cooking and Mike was talking about something.  He asked his question and I looked up, “What?  What’d you say? Huh?”   Mike says, “What are you thinking about?!?”  True story.  It’s rare that I get SO caught up in my thoughts.

Did God give Tullie Down Syndrome on purpose?  Heck, while we’re at it, did God have Eli die on purpose?  My answer for now is, no.  I don’t think so.  BUT, I do think that He allowed both.  Why?  I don’t know.  I don’t know the mind of God.  I don’t know what He’s thinking.  Do I struggle?  Yes.  Am I content with what He has allowed to happen?  No and yes.  Time has healed a lot, but it’s still hard and I’ve learned not to make light of it.  It’s real stuff.  It’s real life.  It’s really hard.  There’s really no way around it.  

I’ve read a book recently called, The Misery of Job and the Mercy of God by John Piper.  It’s a poem of the story of Job.  It’s a quick read and very good.  I need to re-read it again before I give it back to my friend to get all that’s in it.  I was re-reading the preface (a Word to the Reader) and he pointed out two things that struck me.  One, he said, “Whatever Satan’s liberty in unleashing calamity upon us, God never drops the leash that binds his neck.”  That struck me, because there are many times I’ve heard people say, “We need to pray that Satan will no longer attack you and your family.”  My response in my head was, “Well, who said he was out to get us?   Sure, I’m God’s kid, but because we’re suffering it’s all Satan’s fault?”  I honestly don’t know how I feel about that.  God has Satan on a leash. He can only do what God allows him to do.  He can’t make things happen that God does not already control.   Has Satan been out to get us?  I don’t know.  Honestly, I’m not really sure if I care.  I’m Jesus’ kid and so is my husband and my prayer is that my children will be too.  We’re safe with Jesus. 

Piper also said, “The great purpose of  life is not to stay alive, but to magnify-whether by life or by death-the One who created us and died for us and lives as Lord of all forever, Jesus Christ.  I pray that His sovereign goodness will sustain you in the unyielding joy of hope through every flame of pain and flood of fear.”   There is so much truth in that statement.  We were made to magnify Jesus.  Glorify Him. 

Jesus is sovereign.  That’s what I told my friend.  He is sovereign and He allows things to happen.  He allows people to be sick.  He allows pain and suffering.  He allows joy and sorrow.  Jesus knows that His glory will shine through it all, even if we don’t see it.  I struggle.  I wrestle.  I question.  That’s me working out my faith.  That’s me being real.  That’s me telling Jesus that I don’t like my circumstances.  I don’t think that that’s sin.  I think it’s being honest and human.  It’s when I shake my fist at God and tell Him that He’s wrong and I turn my back thinking that I know better then Him.  That’s sin.  That’s lack of faith and trust.  I haven’t lost faith.  I’ve struggled, but I haven’t lost faith. 

Jesus is sovereign.  I don’t know His mind.  But I know He’s in control.  I know I can trust Him.  

John Piper tweeted this a couple of weeks ago, “When you take a breath and exhale in sobs, fall against the chest of Jesus. He will hold you up till you can breathe again.”   So true. 

Did God do this stuff on purpose?  No.  Did He allow it? Yes.  Would I exchange Tullie? Heck, no!  Do I want Eli with me? Yes.  Do I struggle? Yes.  Do I believe that Jesus is sovereign? Most definetly.