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

Dear Eli,

Happy Birthday.  You’d be four today.  Daddy and I love you so much and we miss you with a passion.  The ache in our hearts have eased, but it’s still a bit achey.  Especially the next couple of days. 

If you were here, Josiah would be teaching you how to put little Legos together, you would be loving, hugging, arguing, playing, jumping, wrestling and protecting both of your sisters.  Josiah and you would be two peas in a pod.  Hanging out with one another.  Giving each other knuckles, pats on backs, building forts, playing with sticks that turned into swords, guns, lightsabers or whatever your imagination wanted them to be.  You and Josiah would be the princes, and the girls the princesses.  You’d be protecting them from the dragon in their castle (playhouse), while they squealed with delight when you won the battle. 

Daddy would have another tag along in the backyard while he worked on his Landcruisers, or tractors.  You’d be an expert wrench and a screwdriver user.  You’d probably would’ve already taken a few things apart by now, in hopes to figure out how to put them back together.  Daddy would be pitching you balls in the backyard and you and Josiah would be chasing after the soccer ball he kicked towards you both. 

You’d probably help me make bread or plant the garden.  We would snuggle on the couch and read a book.  We’d put a puzzle together.  We’d play with the cars and trucks.  Snuggle and watch Cars  together.  Or run circles around the kitchen and the living room with Josiah, Tullie and Ellison. 

That’s what I imagine life would be like if you were here.  I don’t know if that would have been accuarte, but I’d like to think that it would be.  Instead, you’re with Jesus.  You’re hanging with him.  I bet your birthday party is big.  The angels sang when you were born and I’m sure they’re singing with you now. 

Your short life became pretty amazing.  How Jesus has used you for His glory is simply amazing.  Our hearts are full of Him. 

We love you sweet Eli.  We love you a lot.  Our hearts ache because we miss you so much, but we also know you’re safe and we’ll be reunited one day.

We’ll see you soon,

Daddy and Mommy

Dear Ellison,

You are three!  THREE!  We can hardly believe it.  It’s been a fast, eventful, fun three years with you around.  You are an amazing little girl filled with spunk, joy, laughter, hugs, kisses, lipstick and just enough craziness to make it even more fun. 

You were born at the perfect time.  God’s time.  His timing is always perfect.  You were born screaming with energy.  FULL of life.  When you breathed your first breath, you let everyone know that you were here and that you were here to stay.  Everyday, you let us know that you’re awake and you’ll be awake and active till it’s time for a nap or bedtime.  You’re love of life and vivaciousness is infectious.

You are a wonderful sister.  Wonderful.  Josiah and you are playing spy running around the house looking for things under beds, under tables, on windowsills, in the couch cushions, in sinks and anywhere else.  I’m not sure what you’re looking for, but it must be important.  I hope you catch the guy or thing that you’re looking for… 

When Tullie walks in the door from school you two act like you haven’t seen each other for a week.  So many hugs and kisses go around.  It’s very cute and very funny.  You and Tullie have a very fun relationship and you love one another very much.

You are three!  You are a big girl!  You are a beautiful girl!  You love to sing, dance, sit on laps and be with  your daddy. 

Happy Birthday Sweet Thing!  You are amazing.  You are loved.  Jesus sent you to us at just the right time!

Love,

Daddy and Mommy

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.

When I found out I was pregnant with  Ellison I cried.  I cried hard.  Then I went to finish the job of moving out of a house that we just put on the market.  We even saw our friend who cleaned it and she saw that nothing was amiss.  I guess I can put on a good show if I have to.

Eli had been born and passed away just four months prior.  I was NOT ready to be pregnant.  I was NOT ready to be in that “state”.  It seemed to hard to even imagine, but it was happening.  I knew that Jesus was in control, but I was not sure where my faith stood at the time.

We had spent the summer after Eli died fixing up our rental house and putting it on the market.  At the time the market was hot, hot, hot in Seattle.  When we put it on the market, that week, it took a major slump and really hasn’t recovered since.

That summer was TERRIBLE!  Mike was working.  Mike was fixing the house to sell.  Being a husband to a grieving wife.  Being a dad to his kids. Taking care of us…. and the list goes on.  I was taking care of the kids. Going back and forth between two houses.  Going to Home Depot….and the list goes on.  The major thing though was grief.  Grief and stress do not work well together.  Their kinda like oil and water.  They just don’t mix and inevitably when you have grief, you will have stress.

Anyway, we made it to the end!  We put the house on the market on a Friday and the next day we found out I was pregnant.  I called my doctor on Monday and went in for a blood test.  They called later that day and scheduled and ultrasound the next day.

I was playing with Tullie on the floor after I got off the phone with my OB’s nurse on Monday, and Mike was working on the computer in the same room and he said, nonchalantly, “Do you want to leave on Wednesday?”  I said, “Think we could go tomorrow?”  He said, “Yeah. Let’s go.”  I said, “Ok.”  Mike’s work gave him three months paid medical leave to heal and for our family to try to heal from everything.  So, we did what all normal people would do and bought a motorhome and took off.  We ended up leaving on Wednesday and few people knew we left.  We were gone for 6 weeks. It was the best thing that we could’ve done for our family, but mostly I think it was the best thing we did for our marriage. We needed to talk and we had a LOT of time to do it.

When we came back it was time to get to work.  We had to keep this baby in.  I was about 12 weeks pregnant and I went in for our first ultrasound at perinatology (high risk ob’s), and Mike came with me.  They were taking FOREVER to do this ultrasound.  Checking everything.  At one point, the OB kept jiggling the wand thingy on my belly.  Pressing.  Pushing.  Jiggling.  Over and over.  Finally, I was starting to get annoyed and Mike caught on to it.  He said, “What are you looking for?”  The technician says, “Oh, I’m trying to see the baby’s neck.  I need to see it.  The thickness of the neck is a indicator for Down Syndrome.” (she’s pushing, pressing and I gotta go to the bathroom!) “I gotta see it!” (press press)  Mike says, “Who cares?  We already have one!”  The technician stops dead in her tracks.  ”Oh.  I’m sorry. Uh. Uh.”  Can someone say, awkward?  I crack up! Oh I love my husband!  So began a ton of ultrasounds and weird technicians.

I was at the doctor every two weeks. I had at least one ultrasound a month.  Got shots every week and got a cerclage at 16 weeks(ish) (they sewed up the cervix.  That caused an array of issues that really don’t need to be brought up).  Oh, and had a list of rules for nine months that weren’t always easy to follow.  Really it was a bunch of preventative maintenance.  This baby had to stay in!

It was a hard nine months, and I feel that that is putting it mildly.  It was hard on our marriage.  It was hard on my body.  It was hard on the kids, because I was gone so much at appointments.  It was hard.

I was disconnected from the pregnancy.  I knew she was there, but it was hard to connect when I had so much fear.   It was a constant struggle.  I had a bag packed at the foot of our bed at 21 weeks.  Just in case.  I never needed it.  When I was 30 weeks, I told my OB that I had a packed bag for 9 weeks.  She said, “What’s in it?”  At that point there wasn’t much, because I was needing the stuff I had packed.  I then realized how silly it had been.  I had been living in fear.

Spiritually, I was in some wasteland desert.  Some place where I was lost.  I was sad.  I was struggling.  I missed my son. It had all been too much.

Ellison was born on April 10th.  Just 15 days later would be Eli’s birthday.  It was weird extreme happiness and extreme mourning in one month.  Just weird.

When they pulled out a full term, screaming, typical baby girl it was pretty exciting.  She was beautiful.  She was perfect.  She looked just like her brother.  However, I still kept her at a distance.  I was afraid.  I didn’t know if she would “stick”.  I was fearful that something would happen to her and I was afraid to let her in.  She however, would have none of it.  She screamed her way in for three months!  The kid screamed for three months.  She wasn’t colicky.  She didn’t have reflux.  She just wanted to be held.  I was thinking about that the other day.  How she yelled.  Then it came to me.  It was almost like she knew she had to fight a little bit.  Maybe because there were two older kids to take care of.  Maybe because she knew her mamma had been hurt in a really bad way.  Don’t get me wrong.  I loved her from the moment we knew we were pregnant.  And I loved her when saw her on all of those ultrasound screens.  And I loved her when I saw her for the first time.  It’s hard to be pregnant after losing a baby.  I put up walls to protect myself.  I’m not saying I was right, but it’s what I did.   She screamed for three months and I got attached through holding her to keep her silent.

Ellison is passionate.  Full of passion.  When she’s happy, she is fully elated.  When she’s mad, she is fully pissed off.  There isn’t much of a medium with her.  She’s one extreme or the other.  I love her.  I love her curly hair.  Her funny laugh.  I love the way she, Josiah and Tullie play together.  I love how she’s a take charge kinda gal.  I also love her physical love.  She is a physical touch girl.  We get hugs and snuggles all day long from her.  Her happy place is on Mom or Dad’s lap sucking her fingers with her blankey watching Cinderella.

Ellison Reese, my little girl that we named after a street sign in Albuquerque, is our pride and joy and Jesus knew exactly what He was doing when He gave us her.  He knew that we needed her.  We needed her snuggles, her hugs, her screams demanding snuggling and her affection for her family members.  Jesus has used her to help us heal.  To help us see His goodness.  To see His mercy.  To see how “Unkindly He has Kindly Shown Me.” (John Piper)

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.