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

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.

I was at a super sweet party on Monday night.  There were a whole bunch of ladies that I rarely get to see and I got the time to catch up and chat with several of them.  It was a great evening!

It has been rare in the last several months that someone would start a conversation by a question that I have to think about in order to answer.  I really really appreciate those questions, and I so wish that I had the tact and the ability to start a conversation digging in deep.  Anyway, a friend started a conversation by asking what I wanted Jesus to teach me during the upcoming year and what I felt like I needed to learn.  I think I let her sit there for literally five minutes so that I could think of something.  I knew what my heart was like, and honestly I wasn’t sure if I wanted to be vulnerable.  At first I said, “I need to be more patient with my kids.”  Totally lame answer.  ALL of us need to be more patient with our kids.  I don’t know of one parent who doesn’t pray for patience and wisdom with their children.   Instead, I decided to go for the plunge.  I decided to be vulnerable and to share something that Mike, my husband, had been talking to me about for a couple of weeks.

He had noticed in my previous posts that I would say that when something bad happens in the future that I would want Jesus to be my all.  Almost like I’m preparing for something to happen.  Like I want it to in order to be able to say that Jesus is all I need.   I struggle with the uncertainty of the future.  I’ve struggle with fear from the time I was a kid.  Fear of being kidnapped.  Fear of not having friends.  Fear of not fitting in.  Fear of not getting married.  Fear of something happening to my husband.  Fear of being alone.  Fear of blah, blah blah….the pathetic list goes on and on.

Let me explain a little bit.  In February of 2005, Mike’s mom was diagnosed with stage four ovarian cancer.  We went and visited her a couple of times over the next couple of months, and in May, Mike’s sister called and told us to get to Montana quickly.  On May 13, 2005, Mike’s mom passed away.  We had a crazy month ahead of us with renters moving into our apartment and Mike  being away on business a couple of times that month.  On June 13, 2005, Tullie was born.  Her diagnosis was a shock to us, she was a 31 week preemie and she was in the hospital for six weeks.  While we’re still trying to recover from her diagnosis, dealing with her being on oxygen, doctor’s appointments etc., I was pregnant again.  I was convinced that I was going to be an easy patient this time.  Have a full term baby and everything was going to be perfect.  On April 10, 2006, I was put on bed rest, because I was 5 cm dilated.  I was 22 weeks pregnant.  This was not good.  Mike and the kids moved in with a family from church, while I moved in to the hospital.  It was the most stressful three weeks of our life.  Eli was born April 25, and passed away the following day because of an infection.  We’re in the midst of grieving and our world is spinning, and we have a house to sell.  We move into our rental, spruce up our house, have the worst summer of our lives and then find out we’re pregnant again.  I was a mess.  We left town for six weeks.   The pregnancy with Ellison was really hard on us.  We made it nine months.  She was perfect, but I was afraid that something would happen to her those first three months.  Almost like it’s been so bad for two years that nothing good could possibly happen….

My point is this, during those two years, I came to a point where I expected bad.  I didn’t expect any good.  Everything that happened was going to be bad.  It was like a bad dream for two years.  We made it.  We made it through.  Jesus saw us through, but it was HARD.  I look back and it seems so surreal to me.  I can’t believe we walked through all of that. Now that we’ve made it through, it’s hard for me to look forward without fear of the unknown.

While I was explaining this to my friend, I realized something.  Jesus was enough before those dark hours.  He was enough during those dark hours.  And He’s enough now.  So, why wouldn’t He be enough later.   Why do I think that I don’t think that He will be?  Of course He will!  He’s the same.  He doesn’t change.  His love for us doesn’t change because of our circumstances.

Everything that happens in this world has passed through Jesus.  He doesn’t allow anything that hasn’t already passed through His hands.  He is constant.  I have nothing to fear, because He is all.

This is a real struggle for me.  I hold onto my loved ones loosely, yet tightly.  I don’t want to suffer.  I want it easy.  I’m fearful of the future, but I have nothing to fear.  This is a constant battle in my head.  I’m grateful for my husband who listens to my freak outs and then says, “Why are you even thinking about that?” and brings me back to reality.  The here and now.

Because I tend to fear the future, I miss out on some of the present.  This coming year I want to rest in the fact that Jesus is sovereign.  He knows the future.  He has my family in His hands.  He loves us.  He does not promise a life without suffering, but He does promise grace, mercy, love, faithfulness, sanctification and so much more.

Thanks friend for that talk….you helped me sort it out.  Now relationships?  That’s a whole other post……

There is nothing—absolutely no circumstance, no trouble, no testing that can ever touch me until, first of all, it has gone past God and past Christ right through to me.  If it has come that far, it has come with a great purpose which I may not understand at the moment.  But as I refuse to become panicky, as I lift up my eyes to Him, and I accept it as coming from the throne of God for some great purpose of blessing to my own heart, no sorrow will ever disturb me, no trial will ever disarm me, no circumstance will cause me to fret, and I shall rest in the joy of what my Lord is.  That is the rest of victory. ~ Dr. Alan Redpath

I’ve struggled with joy.  I’ve struggled with joy, because I thought that joy was just an emotion.  I thought that if I was joyful then I’d be happy.  There’s a difference between joy and happiness even though in our society they are synonymous.

During the first year of Tullie’s birth and the year of Eli’s death, I struggled and wrestled with happiness/joy.  People would talk about what they wanted in the New Year and they’d say, “I want to be happy.”  Almost like if any sort of struggle or pain shows up their happiness/joy is stripped away from them and it’s nearly impossible to get it back.  I’d think, “I’m not happy.  I’m not full of joy.  I am in a miry pit.  It’s dark. It’s cold and it’s ugly.  There is no joy/happiness here.”

Three years ago we had a bad Christmas.  It wasn’t just a bad day, it was a BAD day.  On the West Coast and on the East Coast.  The three hours didn’t make much of a difference that day.  It was one thing after another.  Tullie woke up at 6 AM gasping for breath.  Mike ended up taking her to Children’s because she was struggling really really bad.  I was pregnant with Ellison, so Josiah and I hung out at home waiting to see what was going to happen.  Come to find out she had croup and they were going to be keeping her overnight to keep an eye on her, because her airway was so stressed and they wanted to make sure she was going to be ok.  Mike came home for a few hours, so that Josiah could open his gifts entertain some guests and hang out with us for a bit.  While we were having dinner, we got a phone call from my parents about something going on with my sister. Well, by then, I hung up the phone and nothing kind was coming out of my mouth.  Words used out of frustration, anger and wanting everything to stop and be normal.  Mike went back to the hospital to spend the night with Tullie.  My sister and I cried together on the phone and I think collectively we were curious about joy/happiness.  Where was it?  It certainly wasn’t in this mess.

I would get annoyed when people would tell me, “The joy of the Lord is your strength.”  ”Be joyful! You have Jesus.” “There’s joy in everything!  Every situation there’s joy.”  ”You can be happy, just dig a little bit deeper in yourself.  You’ll find it.”  I quickly became a cynic.  I felt like those phrases were so fake.  What in the heck did it mean?  Find joy in death?  In sickness? In pain? In destruction? What in the hell were these people talking about?  For me in those moments I was a smiling, joyless/happyless person.

What I have learned over time, is this, if my joy/happiness is in my circumstances, the things I have, my situations then that is fleeting.  It means nothing.  I’ll be happy on Christmas when I open a pretty present from my husband, but is that happiness going to remain throughout the rest of the day?  I will be joyful when Tullie speaks crazy big words, because I am thrilled with her development.  But will that joy last through the rest of the week?  Does the joy/happiness in my circumstances define who I am? No.  Does my pain/sadness in circumstances define who I am? No.  Who defines me?  Where is my identity?  When all the crap is hitting the fan, where is my eternal joy going to lie?  Joy and happiness are emotions, but Paul also uses the word joy in Philippians as a command.   Paul is in prison.  He’s being beaten.  His body is broken.  He doesn’t know how much longer he’ll be around.  He’s telling the Philippians, “always in every prayer of mine, for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (1:4-5) and “…I know that I will remain and continue with you all, for your progress and joy in the faith, so that in me you may have ample cause to glory in Christ Jesus, because of my coming to you.” (1:25-26)  Throughout the book Paul is telling them to rejoice and have joy, despite his circumstances.  What is he telling them to rejoice and have joy in?  Is it circumstances?  Is it something fleeting?  No.  Hint: Sunday School answer.  It’s Jesus!  Our LORD!

The joy of what our LORD is!  What is He?  He is faithful.  He is just.  He is our comforter.  He didn’t say that life was going to be easy.  He didn’t say we were going to get by without suffering.  In fact, because we love Jesus we may suffer more.  We may suffer more so He can be glorified.   Jesus is not concerned about our earthly happiness.  He’s concerned about our sanctification.  While we’re going through that hard process, where is our joy?  Our joy is in who our Jesus is.  When joy is in Jesus it is not fleeting.  It remains the same.  It’s solid and it’s strong.  It carries us through the storms.  It doesn’t sink.  It’s steadfast.

Ok, this one’s for Tullie. All for Tullie. 

When I was pregnant with Tullie, we didn’t know the sex of the baby, (because we’re the weirdos who don’t find out the sex, because we think surprises are fun) and Mike said, “Hey, if it’s a girl, lets name her Tully.” I said, “Like the coffee???” He said, “Yeah, why not?  No one else has.  I think it’s cool.” (There’s a coffee chain  here in Seattle called, Tully’s for those of you who don’t know.)  So, I rolled the idea around in my head for about 30 seconds and said, “Yeah, I like that.  Tullie.  Tullie Rose.  Oooooo! Pretty!”  Seriously, that was the conversation.  So, I had to find out what this name meant, where it was from etc.  Tullie is Irish and it had a few weirdo dark meanings, but there was one that stuck out and it’s the one that I believe.  Tullie means, “At peace with God.”

Our sweet girl was a 31 week preemie.  Her gender was a surprise as well as her diagnosis.   After Mike came back down from the NICU and told me that Tullie had Down Syndrome, the meaning of her name kept rolling around in my head.  At peace with God.  At peace with God.  Wow.  For some reason, the meaning of her name meant a lot more to me in those early moments then what I ever thought it would if we had had a typical child.

Tullie came home with us 6 weeks later on oxygen.  We were back and forth from doctor’s appointments, therapy sessions, Children’s Hospital etc. for a LONG time.  They say the first year is the hardest with a child with special needs and they were right!  Tullie was on oxygen for 10 months 24/7.  We dragged that stuff everywhere we went. 

It was hard to say the least, and, quite frankly, there were times we were tired and done.  Having a child with special needs was not something that we asked for.  We had people tell us, “Oh, you are so lucky!  I’ve always wanted a child with Down Syndrome!”  I’d think, “Do you want her?”  Not that I would give up my child, but there were times I was tired and I was done and my flesh was weak and my heart was hard.  Those thoughts aren’t right, but they’re real.

We couldn’t take the kids to church with us through the fall and winter because of Tullie’s respitory issues her first year.  If Josiah caught a cold in the nursery then brought it home, it could have been really bad for Tullie.  So, Mike and I would take turns.  I’d go in the morning, he’d go at night, or what have you.  Until some wonderful friends offered to watch the kids for us then we’d go to church together, and they’d go to a later service, which was really simply amazing during that time.  All that to say, that one morning, I was at church alone and I was tired.  I saw a friend and I collapsed on her.  She took me upstairs to a pastor’s office and through the whole service (services are long at our church) she listened to me cry and she was a wonderful encourager.  During that conversation she said something that changed my way of thinking.  She said, “Sometimes you gotta just say the stuff you’re thinking to Mike or me, even the really ugly stuff.  Once you say it, you’ll feel bad, but it’s out there, and it’s said and you can move on.”  I thought I had to keep all the stuff that I thought in my head, because it wasn’t “good” or positive about the situation.  I can’t go flyin’ off the handle with everyone, mind you, but with Mike or a close friend, or with Jesus, I need to say what I’m thinking.  Jesus taught me that through Tullie.  I may not have been happy with her diagnosis, but I learned a valuable lesson during grief.  Say it.  Whatever or how horrible it may be. Say it.  Jesus carries us through it and He’s gracious.

After Eli was born, Tullie was just starting to sit up.  At 11 months.  Took awhile.  By the time I was pregnant with Ellison she was trying to crawl.  She mastered crawling when Ellison was about 5 months old.  Tullie and Ellison started walking together Ellison was 18 months and Tullie was three.  Tullie does things at her own pace.  No one can speed her up.  She wants to run, she’ll run.  When she’s ready to do it, she will.

After Tullie’s early intervention she began going to a public preschool called Ready Start with Josiah.  Tullie started to get all of her therapy services through the public school.  She wasn’t walking yet when she started school and she was the shortest kid in the class.  That first year of preschool, I felt like we were stuck.  In fact, I had felt like we were stuck for a few years.  Progress was slow physically and in her speech.  I was getting kinda bummed out.  I knew all of the therapy was helpful, but she had plateaued in all of her therapy that things didn’t seem to be going anywhere.  I thought many times that I was going to be carrying this kid till she was 16!

She started walking around Christmas 2008. Once she started walking she was doing it more and more and it was fun to see her run across the backyard this past summer.  It wasn’t until the Fall when she was going on the bus for school this year that I saw it.  I SAW it!  I noticed the huge progress that she had been making.  All these little things had been going on for months and I noticed them all in one moment.  I thought, “WOW! She’s tall!  She’s standing straight! She’s getting on the bus herself! She can DO this! She’s INDEPENDENT! WOW!”  Since then, I’ve been shaking my head in amazement.  She TALKING! She’s WALKING! She’s RUNNING! She’s trying to dress herself!  She puts things away!  She is becoming an independent little girl who knows how to do things and is learning life skills. 

I was at her parent/teach conference the week before Thanksgiving and as we’re ending the conference they said, “She’s ready to be mainstreamed into Kindergarten.  She’s doing amazing.”  They said that they didn’t always mainstream kids with DS into Kindergarten, not because they want to segregate them, but they simply don’t have the life skills to do what they need to do.  Tullie will need a lot of support, but she’s ready.  She’s READY! I really can’t believe it.  For so long, I thought we would never get “here.”  Wherever “here” is, but we’re here.  It’ll be hard work, but she can do it and I’m really excited about it. 

There are days I still grieve her diagnosis.  Mostly because I’m selfish and I want something easier.   Jesus knew what He was doing when He gave us Tullie.  Her sweet smile and shy shrugs when she gets a little embarrassed melt me.  Watching her try something new with the determination that she has astounds me.  She waves at everyone and will give a stranger a hug (which we need to watch out for).  She’s the first one to help to empty out the dishwasher and she’s the first to dance when the music is on in the kitchen.  She loves life.  She has no fear and she’s not intimidated by anyone.  She’s Tullie.  Her heart is sweet and Jesus’ glory shines through her sweet grin.

“I am convinced that learning the delicate art of grieving comes mostly through being minstered to by mature people during our own times of grief and through years of practice.” ~Carson Kistner

When I was a sophmore in college my roommate’s (and very dear friend), mother killed herself.  It was horrible, which is a complete understatement.  Tragic.  Awful.  Terrible.  I remember almost every detail of her telling me what happened, driving her home with another friend, being at her house, going to the service and her coming back to school and the months until the year was over.  It was a HARD semester.  I couldn’t wait to get home.  Selfishly.  My dear friend had gone through the worst thing ever!  Myself and another friend had walked beside her knowing her pain, but not totally grasping it all.  It was a tough thing to wrap our head around, and honestly there are days I’m still not totally sure that I get it. 

I had never really had to “deal” with death until my roommate’s mom died.  Before it had been the elderly at church, and I remember a couple of children who had been ill for a long time passing away.  But this time, it was real, it was close, and it was very personal to one of my best friends in college.  I saw her pain and I cried with her and started to ask, “Why would a person do that?  Why?”

I had never dealt with anyone who had grieved before and I don’t think I handled it all that well.  I know that there were many times that I was selfish and unwise in my responses to her.  I was not mature.

Now that time has passed I can see more of  what she may have been feeling, and I feel badly that maybe I could’ve helped her more.  We still stay in touch and talk to one another and hopefully we’ve both matured over time.

The quote at the top of the page struck me the first time I read it.  I reread it a couple of times to let it sink in.  It’s full of wisdom and I think it’s also something that we rarely think about.  What I mean is, do we ever think about a ministry to the grieving?  I had never thought about that until I read this.   Is this something that Jesus did?  Yes, look at the death of Lazarus.  He ministered greatly to Mary and Martha during that short time.  He was even comforting His mother from the cross.  Making sure she was taken care of by John.  And I’m sure that there were many other times not mentioned.  If Jesus did it, then we should as well.

When I first think of grieving, I think of death.  Usually the death of a person.  However, I also think that grieving can be the loss of a job, expectations that we had that won’t be met, an opportunity that was missed, or won’t be had and relationships that have fallen apart.  It wasn’t until Tullie was about 3 months old, I realized I had been grieving.  I hadn’t been grieving Tullie, but I had been grieving her diagnosis.  I had been grieving the expectations that I had for my daughter.  The typical daughter that we had expected.  The daughter that wasn’t going to have any issues and she was going to grow up and be like all the other kids.  I didn’t think that it was ok to grieve that, but I had to.  Down Syndrome is something that we did not expect.  It blew the wind out of our sails and we were floored, to say the least.  BUT, it’s what we got.  We grieved our expectations.  I’m not saying that there are no more days of struggle, because there are, it’s just different then when we got the news four years ago.  Time has passed.  Our hearts have healed.  Tullie is a blessing and a joy in our lives.  Jesus knew how He would change us.

When I think of mature, I think of old white haired ladies that have lived a long life, love Jesus and are ready to share their experiences then go to heaven.  I don’t think of young folk.  But I’ve learned that sometimes the youngest folks can be more mature then the older folks.  I’ve noticed that some of my friends who have ministered to me the most have been younger then me.  It’s because they’ve become mature through their experiences.  They’ve grieved and they’ve learned.  They’re ready to share and they do.  I’m not saying that I don’t know older and wiser woman who have had a great impact during my times of grief, because I do.  I know many and I’ve been ministered to by many. 

I think that one of the things to remember is that grief is not bad.  A period for grieving anything is not bad.  In our society we don’t know how to grieve.  We don’t know how to really face our pain and deal with it.  Whatever it may be.  When we let ourselves grieve and allow those who have grieved before us to help, the weight seems a little lighter. 

The portion of that quote that I don’t like is, “….through years of practice.”   I have no desire to have years of practice of grieving, but I don’t think I would be saved from that.  Each time we grieve and heal, we have more to share with others who are grieving.  We have more to give.  I would prefer to have a griefless life, but that has not been the case.  Instead, for those of us who have grieved, we must learn and we must help those who are in the thick of it.  Simply because Jesus did.  He wasn’t selfish and kept all of his pain and sorrow to Himself while He was here on earth.  He had words of comfort for the grieving and He asked His disciples to pray for Him when He was grieving and hurting before He went to the cross for us. 

We will grieve in this life and hopefully we will suffer well with Jesus’ help and the help of His children who have grieved before us.

“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”   I Peter 1:3-9