Showing posts with label Trisomy 18. Show all posts
Showing posts with label Trisomy 18. Show all posts

Thursday, November 21, 2013

New Normal

I have officially talked Walt into letting me decorate for Christmas before Thanksgiving. I must admit I am pretty excited about decorating and the approaching holidays... Walt has said he thinks this will be the first holiday we have ever REALLY celebrated. I agree. And we are doing things a little different this year with our little family. Starting some new traditions and intentionally savoring what Christmas is all about. I read an article the other day about removing Santa from Christmas and I went on a tangent to Walt about how we should eliminate Santa from Christmas and all these other lofty thoughts... And my simple country boy replies with, "We both grew up with Santa and we love Jesus." Well said, Bowie, well said. So needless to say, we are keeping Santa but will be worshiping Jesus :) and remembering Wills and relishing Fenley and each other.

Fenley has requested a mircophone, a unicorn and a sleeping bag. Really? She makes me laugh. 

So Friday is my postpartum check up. Bittersweet. I don't want to be finished with the physicality of having Wills. Confession: I've thought about calling to reschedule to buy myself another week of expecting one more appointment where Wills is the reason I am there. Just know if you see me in Kroger Friday afternoon, don't question the amount of cupcakes in my buggy. Just smile and wave... In all seriousness though, I do grieve the end of my appointments. I miss being pregnant with him and I am going to miss having appointments because of him. Prayers appreciated for Friday morning...

On a really uplifting note...some legit guys that Walt went to college with all went in together and blessed us tremendously. We went to dinner with one of them this week because he had something to give us but couldn't open it until we got home. Well, antsy pants me opened it the second we got in the car. Tears flowed the whole way home from both Walt and me. Inside was a gift card to The Alluvian for an overnight stay, with the romance package, a couples massage and dinner at Giardinas. I mean really. The cool thing is I turn 30 in January and I had been hoping to spend my 30th at The Alluvian before we got Wills' diagnosis and was trying to figure out how to budget for a getaway. When we found out Wills' condition all of that went on the back burner obviously. And look what God had in the works...thank you, legit guys, for splurging on this tired couple... We are so excited and more than ready for our getaway. Marvelous. 

Our new normal is constantly changing feels like. A few big changes. A few small ones. A few fun ones. A few not so fun. All in all, life feels like an adventure now. With God really calling all the shots and us asking for wisdom and perspective and endurance and joy. He knows our hearts better than we do. Who better to shepherd us? I told Jan Moncrief tonight I am having trouble finding words to describe where my heart is (which is rare for me!) but started thinking... who needs words when you have the Creator of the universe intimately acquainted with where you are? So again...I muster every ounce of faith I have and rest in Him. Glance at one picture of Wills Bowie and I'm reminded..."Oh yeah, just do now, in faith and trust. And keep your eyes peeled for marvelous."

We are having another NICU reunion Monday ("Hi, my name is Lauren Bowie and I am a Baptist Hospital stalker"). Taking them a chocolate cake. Apparently our favorite neonatologist likes chocolate :) I wish I could make sure he always has a chocolate cake at his disposal. Words aren't enough for that doctor. I know this isn't 100% true but I like to think it's somewhat true maybe...that God moved him here from Birmingham for us :) his heart certainly made us feel that way. I know Wills will be in his receiving line when he gets to Heaven. Hopefully with some form of Heavenly chocolate...

I'm thinking I've rambled enough for tonight :) good night...
Lauren


Saturday, November 16, 2013

Should Be Sleeping...

Yeah so my eyes are burning as I write this. Slumber is calling my name but my wheels are turning about WLB.

Wills went to be with Jesus 15 days ago. What an interesting road this has been and still is. I wouldn't change it for anything. I don't want to raise Wills as the old me...which is who I would still be if not for his perfect little life. I would be complaining about sleep deprivation, pumping, hospital bills, weight retention (aka - I can't stop eating sweets), not enough "me" time and totally missing the glory of him. Could go on and on. I remember the old me too well unfortunately. 

Thank You Jesus for your work on the cross that Wills can be in paradise with you. How cool are you, really, Jesus? That you gave your all for ugly hearts like mine. That I would have you with me in the valleys - particularly the valley of the shadow of death - and the mountaintops. Goodness. Glory. 

I've got some thoughts on Heaven. Sometimes I get overwhelmed or intimidated at the thought of what Heaven may be like. I can't comprehend it so my mind can get boggled easily... Because it's unknown to my flesh. But if I've learned ANYTHING on this road it's this: If You are involved, then it's GOOD. And if Heaven is where Your Word says Your throne is, then my goodness, what more do I need to know? :) 

The road of contentment in this life is paved in humility. God has taken me to Luke 17 quite often in my heart...

"When a servant comes in from plowing or taking care of sheep, does his master say, 'Come in and eat with me'? No, he says, 'Prepare my meal, put on your apron, and serve me while I eat. Then you can eat later.' And does the master thank the servant for doing what he was told to do? Of course not. In the same way, when you obey me you should say, 'We are unworthy servants who have simply done our duty.'"

I like to think this duty for us from God sounded a little like this...

Boy, William Lamar Bowie
Parents, Walt and Lauren Bowie
Big sister, Fenley Grace 
Birthday, 10.17.13
Birth time, 12:34PM
Brown hair and a hairy back
He will always sneeze twice like his mom
He prefers his right side
I'm allowing T18 because that will bring more glory to My Name 
Let's give them the word Marvelous 4 times...they'll need it
Life on earth, 15 days

God said 15... I humbly whisper, "Ok." Who am I to question? And not only do we say "Ok"...but we say thank you. For a sober heart. For 20/20 glory vision. For a son. For a calling. For a new fire in our hearts. For restoration. For marvelous. For meeting us here and being so stinking good to us.

Some folks assume I don't want to be around anything "baby" right now. Nothing could be further from the truth. I love your babies!! They're precious. They smell awesome. They're lovely creations of God that He has entrusted to YOU. I adore your baby and I hope you adore and talk to me about my baby. I got my mama's boy. He's in Heaven... I raised him here. I got to plan his life celebration because he had a LIFE! I think he's irresistibly perfect for me. And your baby is perfect for you. Trust me, be yourself around me. Brag on your baby because I can promise you I'll be bragging about mine! 

I am convinced the Holy Spirit LOVES Baptist Hospital. We went to visit the other day - literally hoping to see ONE NICU nurse (Sondra Finkbeiner - I wanna be like her when I grow up!). Well... We see my OBGYN, who talks to Walt for 10 minutes about duck hunting (insert drooling husband) and even mentioned Walt going with him on a duck hunt. Then we get in the NICU and next thing we know, almost the entire team that got us home with Wills was there by chance - even Lee, our Oxygen guy :) it was just too good! We even got to pray together. Hello, glory! And shared a few Wills stories too of course...

Last train of thought I'll indulge tonight... Most of this blog has been about Wills. Well, I would like to say how crazy I am about my baby girl. She is MANY things that I wish I were. And she's only 2. I feel quite certain that she is going to have a marvelously fruitful life for the Kingdom. The faith of a child is a beautiful thing. For the first few days after Wills went to Heaven, she would go to his crib and say, "Where is Baby Wills?" And we would reply with him being in Heaven with Jesus and she would simply, excitedly say... "Ok!". I mean really, thank you Fenley Grace for teaching me. You and your brother are legit and I am so proud that God entrusted both of you to me. 

Enough for tonight I suppose :)

Night night...
Lauren

Some pics...because there are literally like 1,700 of them and I just feel like sharing some tonight. Part of my process :) I love missing Wills, it's the next best thing to having him. 

Admiring our little man in the NICU 

Our last night together 

Be still my heart!

Forehead cleavage...

Miss those eyes.

Love this one of us 3...

Last but not least...our NICU reunion!

Tuesday, November 12, 2013

Forever

Forever bound to Wills. 
Forever grateful to God. 
Forever humbled to be used. 
Forever doing a heart happy dance to be God's steward. 
Forever sweetly loved by my Creator. 
Forever asking God to rid me of pride.
Forever expecting good things from His big hand. 
Forever eating cupcakes. 
Forever praying I'm like the servant who doubles his money. 
Forever wondering what Heaven looks like. 
Forever rainbow hunting. 
Forever texting my friend asking her how she has the sweetest grief. 
Forever not shutting up about the glory here.
Forever smelling Wills' blankets. 
Forever stalking the Baptist NICU. 
Forever not washing a certain tank top.
Forever trusting God like never before. 
Forever marinating in God's Spirit. 
Forever reading and relearning the definition of marvelous.
Forever counting miracles. 
Forever flipping through Wills' pictures. 
Forever being needy for God to carry me. 
Forever contemplating how we did this story. 
Forever lingering with Fenley. 
Forever pushing the pause button. 
Forever weepy and sappy. 
Forever nostalgic. 
Forever treasuring 15 days. 
Forever journaling. 
Forever giddy at being Gods child.
Forever thankful for Jesus and His blood and His promises and His provision and His call to the harvest...





Sunday, November 10, 2013

Gold Diggin'

Who knew a 44 second video of Wills breathing in the NICU could be such a treasure now. 

Who knew heartache could also be the greatest gift I've ever received. This road is lined with gold... God has made me linger long enough to pick up as many pieces as I can. I love gold digging :)

Also along this road I've met my heroes... You all know who you are. Fellow gold diggers. You've reached out to me to share your heartache and I say thank you. I've decided that heartache has no meter, whose is worse or whose is better. It's just heartache at the end of the day. Y'all are part of my treasure here. Y'all inspire me to keep going because y'all are still going too...

A few people have mentioned they hope I keep blogging. I hope I get to keep blogging too :) that's a conversation I'm having with God lately. I want to keep writing, it helps me. So I hope He keeps inspiring me...because that's the only reason I write. I pray I don't get blind again in my excess. Blind to the gold in every day life. Must say... Wills made it pretty dang easy to see gold. But I know God will continue to meet me in this season of earthly loss and show Himself marvelous to me.

Speaking of gold... 

My friend Carly owns a store called BellaChes. She is the friend who keeps me stocked up on Little Debbie's and cupcakes :) not the kind of friend who just feeds you - she'll pig out WITH you - sisterhood right there! Well, at this store is a jewelry line called Heather Moore that I am obsessed with. I have a necklace with a couple of charms on it telling "my story". One charm from Walt with "Love" in all the different languages. One charm from my mom on my first Mothers Day that has "Fenley Grace" on it. I love my necklace... the day we planned Wills' gathering I went by the store to hug their neck. I peeked in the Heather Moore jewelry case to start my wheels turning about what kind of charm I would custom order for Wills. 

And what do I see...but this in stock one of a kind piece...


That's right. God had already ordered a custom piece just for me. A "Make the Days Count" charm with none other than FIFTEEN days marked off!!! Y'all!!! Please...someone pinch me :) that's how much God loves me.

And that's how much He wants to meet you too. Just FYI :) He wants to custom order you a charm for your necklace. He wants to let you get peed on. He wants to meet you where you are and lavish His love on you!

Let heartache sober you enough to see the gold... He's right there. Accept His call to deep deep deep love with Him. Intimacy with Creator and created. Pray I keep accepting the call to deep love with Him too :)

On a lighter note...

Life is shifting into a new normal. I really loved my normal with Wills. How I treasure that 15 day normal! Goodness gracious.

Normal, right now, looks a lot like... Walt back at work but texting to check in a good bit. Fenley and me back to being "daytime buddies" as I like to call it. A lot of sitting in Wills' room and smelling his hats and blankets. Me back to doing all our laundry...not sure how I feel about that one :) Some tentative Holiday planning. Coffee drinking and donut eating. An excessive amount of looking at Wills' pictures and videos. A good bit of sleep catching up...embarrassed to say we were all 3 in bed at 6:45 Friday night! And really just enjoying each other and Fenley, missing Wills and thanking God for 15 days :) and some major "Wills story telling" too... If you come by, be prepared to listen. I may not shut up about WLB and the glory here. You've been warned.

Thanks for listening to this rambling gold digger :) night night...







Wednesday, November 6, 2013

Dear Wills...

Hi there,

Mama here. Ya know, that soft, pale, big eyed blonde you got to snuggle with so much. Did I smother you with affection? I certainly hope so. I can't wait to do it again one day...just get ready. I plan to embarrass you in front of your friends :)

I sit in your nursery tonight...missing you, praying, loving God, listening to our song, missing you, hearing Dad and Fenley play a room away, aching, missing you, drinking a glass of wine, rocking, and did I mention missing you?

What a celebration of your life yesterday. I felt like I was having an out of body experience..sitting in a peaceful room with an 18" casket that held your tired body that was in my womb for 36 weeks. The same baby who gave me labor after I had begged God that I would get to experience labor with you. You broke my water and everything! We made a good team I think :) we still do. 

How did you do it here for 15 days? You made it look easy. But I know as a premie white male with Trisomy 18 that what you did here was no easy thing. You're a stud. My seriously joyful and strong baby boy. 

People keep telling me to grieve. I am tempted to google "grief" and the stages of grief. What I do know is this, baby boy... Just about every thought, emotion, tear, empty ache, and joy is processed with Jesus. How good is He that He sits with this seriously grieving mother and tends to my heart? Just know I'm doing my best to feel everything here and give it back to Jesus as a sweet offering of my heart and my love for you and for Him. It's really all I can muster the energy for right now anyway...

I wish I could understand everything around every corner but I cannot. You taught me that. Thank you. There's beauty around every corner...especially the scary ones. 

I'm on mission now, Wills - just like you were. I'm setting my mind on a pilgrimage to the Heavenly Jerusalem - where YOU are sweet boy!!! - and have a new desire to take people with me. I hope to arrive with a line of folks that we have helped meet Jesus. 

Your room is legit. I love it. It's my favorite place in this house right now. I love that I got to raise you here. 

If I could ask you one thing - it would be have you met Mallie our black lab that died before you were here? Do y'all get to play fetch? Is she still goofy as all get out and hyper as can be? Is she boys best friend in Heaven, too? I hope so :) I know y'all will take good care of each other til we get there. 

I'll NEVER forget the night we got to nap on the couch and I dozed off looking at your dreamy face and missed your feeding by an hour and 20 minutes - sorry again about that :) 

I appreciate the relationship I have with your big sister more now because of you. I now cherish her smell like never before. You did that for me.

Your dad and I are enjoying the heck out of each other - we've slept closer, hugged longer and lingered a lot lately. Except for when I get crispy. Then he's nowhere to be found :) I don't blame him. I'm glad you didn't get to know that part of my personality. 

I'm not a hypochondriac anymore! I welcome the departing from this life into that life. Used to I would get the hiccups and think it could be chronic. No more, buddy. You've given me courage. 

Visited your grave today to clip some flowers for drying. It was really sentimental and sweet. I was surprised... Jeff kindly reminded me it was just me and God there. That helped. 

Ate a cupcake for you today. I now have an excuse for my massive sweet tooth. Thank you for that, too :)

Too much to say. I'll go for now... Hugs, kisses, snuggles and high fives...

Mom






Monday, August 26, 2013

Ready to share...

Gosh, where do you start with a story like this one?

I suppose I will start from the get go...

Walt and I were married for 3 months when we found out we were pregnant in June 2010 with our little girl Fenley Grace.  It really threw us for a loop because we only dated for 8 months and were engaged for 6 even shorter months.  We did not want to start a family for a few years.  I can honestly say we were freaked out and overwhelmed at the prospect of becoming parents already.  I'll never forget the night I took the positive pregnancy test, after nearly hyperventilating, and making Walt get off the phone so I could tell him we are pregnant (no cute reveal story here!)... and then after calling my best friend and mentor Jan because I could barely breathe... Walt and I went for a walk.  I asked that sweet man if we could do this, to which he replied:  If God allowed us to get pregnant, that means we can do this.  Turns out, having a baby girl is the highlight of my life.  Exhausting at times, hard to see straight but the pros of parenthood outweigh the cons so fiercely that I cannot fathom life without our princess/alligator/bunny rabbit/zebra/frog (she wakes up in a different world everyday... we think she may be a vet one day)

Fast forward 3 years to August of this year, August 2nd to be exact :) ... sitting in an ultrasound room, tech taking way too many pictures for me to ask if everything looked ok because I deep down knew better, and Walt promising Fenley a chocolate donut with sprinkles if she behaves in the ultrasound room getting to see baby brother Wills.  The tech wraps up, Walt and Fenley leave to get that promised chocolate donut with sprinkles and I walk to my routine doctor visit that has honestly never lasted more than 3 minutes.  Doctor comes in immediately, which never happens... and I actually bring up that I have gained 15 pounds at 25 weeks and asked if that was okay.  Goodness, when you're off track and self absorbed you can barely see it until you are sobered like we have been.

Doctor proceeds to tell us that our baby boy has some (4 to be exact) markers for a chromosomal abnormality and he wants us to see a specialist... My vision literally starts pulsing.  This was more than air being knocked out of me... I asked if I could text my husband to come back, which I wrote Walt "Come back".  I still can't believe I could text.  Walt walks in with Fenley in his arms and tears in his eyes and we hear that best case scenario would be Down Syndrome, worst case would be Trisomy 13.

Rewind to February when we got pregnant... again, not trying.  Not ready for round 2.  I threw up for 16 weeks.  I complained more with this pregnancy than when I was pregnant with Fenley.  I obsessed about my weight... literally weighing 2 or 3 times a day because I gained 63 pounds with Fenley and still had 25 to lose when we found out we were expecting this little peanut.  Walt and I were fighting quite a bit about the DUMBEST things like laundry, golf, whose turn it was to do this or that, dishes, diapers, budget, me being a terrible driver after blowing out two tires on my car and then driving on them ruining the hubcaps :) I am pretty sure he was wondering why he ever married me... and I may have wondered why he married me too.  Let's be honest... in this bubble we live in, we have the act down to a fine art.  Jesus had not called me to an act but I was doing quite the dance to please everyone and became a huge B in the process.  My heart knew I was meant for more.  Jesus knows our human condition and is patient thankfully.  The night before my doctor visit on that August 2nd day, I could not sleep.  I was worried and anxious all night... I stayed up and read my bible and watched a few TV preachers.  Also may have watched some Bridezillas which always makes me feel better about my life choices :) Had some quiet time.  I could feel something brewing in my Spirit.  I asked the Lord, with tears, to do whatever He had planned for us, that we were ready.  I knew we were at a point where something had to give.  Then I had this picture in my head of something being wrong with Wills' health... I had him pictured with Down Syndrome.  I said, Lord we receive
whatever You are about to do in us.  We want Your call, not our comfort.  Pretty amazing that my Lord has been preparing my heart for this, only He can do that y'all.  Just FYI :)

Back to the doctors... my OB recommends that we see a specialist.  We agree to do that.  We get an appointment on the following Monday morning, exactly 72 hours from the appointment with my OB.  Longest. Weekend. Ever.  We went to the specialist on Monday, he found 7 markers and felt like we should do an amniocentesis.  He also felt that it was Trisomy 18, if anything.  I did the amnio (and let me tell you ladies... it was a non event.  Do I want to do one everyday? No... BUT don't believe the nightmare stories you hear.  It's over in like 3 minutes start to finish with the sanitizing and everything).  We got the results back about 9 days later confirming Trisomy 18 as the diagnosis for our sweet baby Wills.  With Trisomy 18, 50% of babies don't make it to THIS earth.  Of the 50% that do get to visit THIS earth, 90% don't make it to their first birthday.

Can I just say that I have always had a love for God and His story?  It sets my heart on fire.  I could talk to a brick wall about who God is in theory, spiritual things, discuss Him and who He is. At the same time though, some of the application for me has been fuzzy and I have been one to get very bogged down in the law and have allowed confusion to set in over what means what without really asking Him to just reveal it to me as a child.  But that long weekend waiting on that specialist appointment and in the weeks following... I have seen my God that I have adored from afar come close and pick me up, carry me and tend to me ("He will feed His flock like a shepherd. He will carry the lambs in his arms, holding them close to His heart. He will gently lead the mother sheep with their young." - Isaiah 40:11).  I have been able to really meet Him and marinate in His love, not just process it.  As Job 42:5 says "My ears had heard of you, but now my eyes have seen You." Within 24 hours of the first red flag ultrasound on August 2nd we received the word "marvelous" in 3 different scriptures...

marvelous:  1. Causing wonder or astonishment.
          2. Miraculous; supernatural.
          3. Of the highest or best kind or quality; first-rate: has a marvelous collection of rare books.

The 3 verses...in this order. Our God is so beyond good.
Psalm 139:14 (NLT)
"Thank You for making me so wonderfully complex!  Your workmanship is marvelous - how well I know it."

Psalm 9:1 (NLT)
"I will praise You Lord with all my heart; I will tell of all the marvelous things You have done."

Jeremiah 33:2-3 (The Message) - we got this one 2 times in a few hours
"This is God's Message, the God who made earth, made it livable and lasting, known everywhere as GOD:  'Call to me and I will answer you.  I'll tell you marvelous and wondrous things that you could never figure out on your own."

We know that our son, William Lamar Bowie, is marvelous.  We know that God is doing a marvelous work in our own hearts and lives.  God has used Wills to bring me and Walt closer than we ever thought possible.  It's a very tender time and we are embracing what God is doing and the story that He is writing.  And yes... we are 110% letting God write this story.  Day by day.  Our tendency is to run ahead in the future and grab hold of what we think may happen, or try to interpret what is going on but we are gently pulled back to TODAY.  That is all we are promised.  Right now Wills is happy in my belly at 28 weeks.  He's kicking the laptop on my belly as I type.  And I am content in receiving what God does here.  From that first weekend of intense pain and intimacy with God and each other, we have said if this is what it takes to produce lasting fruit for eternity then let's do this in faith and trust and whatever else God wants to do in us.  Pray for us in that.  Pray that we are continually sobered and pulled closer and closer to our Creator... the One knitting us and our son and our daughter together constantly and perfectly.  We trust His hand... it's a good hand, a big one... big enough to do whatever He wants in this story.


One more thing... if you find yourself in a place of doubt about who God is, would you just simply ask Him to reveal Himself to you?  Not in theory but in reality... the reality of where you are.  Draw near to Him and He will draw near to you (James 4:8).  And the Bible... all those promises are real.  He actually shows up.  Keep asking, seeking, knocking (Matthew 7:7).  Anything in your head or heart that is set up against Him, just ask Him to fill it with Himself instead.  Ask Him to be near and He will come... and pray that we would continue to do the same.

We hope to keep friends and family updated as best we can as we walk this out... your prayers are being felt and so appreciated.  This is just grazing the surface of what we are experiencing but wanted to share with our little world what God is doing in our hearts, minds and lives through our precious son.  He makes all things new :)

In Him,
Lauren