Wednesday, April 3, 2013

5 Years

Five years ago today I was given a gift like no other.  Along with the sweetest little 8lb baby boy I'd ever seen, I was entrusted with the gift of motherhood.  And man has it taken me for a ride in five short years!?!  Through the highest of joys and the lowest of tragedies it is the most noble job I have had or ever will.  There are days I fail miserably and days I go to sleep with a smile glued to my face.  There are moments each day I beg God for mercy & moments I thank Him for goodness.  It's taught me more than I could fathom and I've got a LONG way to go and lots to learn...

This sweet little stubborn son of mine turning five today came into this world butting heads with me one second and making me cry for joy the next and he hasn't stopped yet.  He refused to enter the world the way we wanted and he's had 'bigger and better' ideas ever since.  It doesn't seem possible that he's FIVE and starting kindergarten this year.  I feel like I just stayed up pacing the floors all night with him in my arms.
 
Ryder has literally SHOVED me through this past year.  I honestly don't know if I'd be standing where I am today if it weren't for him carrying me along.  The love he had for his brother from the moment he knew he existed was contagious.  And his visions & dreams of him now are astounding.  His hope, belief, & trust through this all continue to challenge my faith daily.  And his sweet smile helps me face each new day... and choose thankfulness.

So today as I clean his MANY messes, enter into his passionate heated debates (about something uber important I'm sure), feed his always hungry belly, listen to his constant humming and chatter I will remember how good God is.  I will remember how creative He is.  Because if this little 5 year old boy is just one tiny glimmer of how creative my creator is I'm still in for a journey.

And this year, celebrating this 5th year is just a little bit sweeter.  We've been given a glimpse of how fleeting life is and how much it means to celebrate it.  And I will joyfully wake him up and take him to get donuts, take cupcakes to his class at school, let him play a little extra on the playground with his sister, surprise him with a dinner trip to Chuck E Cheese (with that wretched mouse & bad pizza!), let him stay up a little late, and put together the biggest & baddest Lego party I can.

I will help him with his BIG plans, whether about Legos or how he's gonna change the world...


   

Thursday, February 28, 2013

Our Valentines for G


I vowed from the day Gibson died we would find a way to celebrate him & include him in special days.  I've always loved Valentines.  Call it commercial or whatever you want, but a day to celebrate the ones you love?  I'm all about it! :)  So a couple days before we were writing Ryder's valentines for school and he so sweetly asked if he could make one for Baby Gibson.  I smiled, said that was sweet and made sure he understood we couldn't really send it to him.  Then I told the kids I'd think of some way to celebrate Valentines Day with him...

We decided to take them to a park and let them them release red & white balloons for Gibson.  They loved the idea.  They had all kinds of questions about heaven, travel time of balloons and the possibilities of attaching a cookie to the balloons for him as well.  ;) They asked if Gibson could see them, touch them, etc.  All to which we answer, "Well, we're not sure, but he knows you LOVE him!" 

That afternoon each of the kids colored a sweet little heart to attach.  
Paisley's was all purple of course, with a happy little sun in the middle.
When I handed Ryder his heart he said, "Can I make it a broken heart?"  A little caught off guard I said, "Well, yes I guess."  He drew the line down the middle and said, "Because I'm heartbroken about Gibson."  I don't know where he heard that, but of course it melted MY heart.
He wrote out "I LOVE YOU GIBSON" on the other side.
After Daniel came home from work we headed to a nearby park where we've taken family pictures before.  It was a beautiful crisp sunset.  I was worried it would be too emotional for my heart to handle, but like many things with kids the chaos overtakes some of the emotions!  :)  It was a very sweet time though.  


One day back in the fall while I was driving back and forth to the NICU the song 1000 Years came on the radio.  The words pierced my heart.  I pictured hearing it as I took Gibson home one day.  As the months went by I heard it periodically and it still got to me.  Then I heard it the day before Valentines and it had a whole new meaning for me.  A new meaning of how I loved him.  A new meaning of how I love Ryder & Paisley.  A new meaning of how I love Daniel.  A new meaning of how we love in general.  

Heartbeats fast
Colors and promises
How to be brave
How can I love when I’m afraid to fall
But watching you stand alone
All of my doubt suddenly goes away somehow
One step closer

I have died everyday waiting for you
Darling don’t be afraid I have loved you
For a thousand years
I’ll love you for a thousand more

Time stands still
Beauty in all it is
I will be brave
I will not let anything take away
What’s standing in front of me
Every breath
Every hour has come to this
One step closer

I have died everyday waiting for you
Darling don’t be afraid I have loved you
For a thousand years
I’ll love you for a thousand more
And all along I believed I would find you 
Time has brought your heart to me
I have loved you for a thousand years
I'll love you for a thousand more
One step closer

Friday, February 8, 2013

Bouncing through grief with a 4 yr old & a trampoline.

Grief is a tricky thing.

It hits at weird, strange, unexpected times.  And it leaves at times when you've completely braced yourself for impact.  When we first lost Gibson I thought it would be easier to walk through this having two little ones at home who would keep us distracted, and won't let us crawl in the covers and never come out.  They keep us moving forward, they keep us entertained and they keep us thankful.  But the more I walk it out I also realize that as a mom that means you just have more peoples' emotions you are responsible for.  More people grieving in their own weird ways and looking to you all along.

When we told the kids Gibson died we made a point to tell them we will continue to talk about him (as much as they want), we will include him in special occasions and in daily thoughts and we will remember him that way.  As HARD as that is day to day I want to choose that.  I don't want them to forget him.  But by choosing this I open myself up to a lot.  Three and four year olds don't see the beauty in a private moment.  As awkward as it is for everyone Ryder abruptly tells that his brother died or is in heaven now, it's exactly what he's supposed to be doing.  We told our family, our friends, and his teachers to expect it and respond like that's perfectly fine, because it is.  We told them to use the word died.  And to talk about heaven.  Ryder's teacher said in the weeks after Gibson's death Ryder made a point to tell all the adults at his school... That Gibson had died & his mommy was very sad.  But that made me happy in a way because he knew.  He could say it (more than many grown-ups could).  He asked me lots of questions in those first few days that I couldn't, or didn't want to answer... about death, about life, about heaven... about why.  I faced them all as best I could, glad that I had a sweet, smart 4 year old capable of asking deep questions.  And in between there were comical questions like, "Isn't it going to hurt to sleep on gold?"  We all looked quizzical for a minute and then realized someone had told him heaven was made of gold... you get the picture.
Many days now Ryder & Paisley bring up Gibson casually- very matter of fact.  And then there are days like the other day in the grocery store when Ryder, upon seeing babies all around, throws himself down in the cart and says, "I wish WE had a baby!"  At that point I wanted to crumble, abandon my full grocery cart and hit the road.  But instead I had the strength {God's grace} to keep pushing, smile and say, "We do have a baby.  He's just in heaven now.  We can still talk about him..."

The kids got this little trampoline for Christmas.  It's a small one person (or two tiny people) capacity thing, complete with poles & netting all around.  At only about 1 foot off the ground its a brilliant way to let a three & four year old get out all their energy.  In there alone they can pretty much get as crazy & rowdy as possible, jump it out and crash.  And they magically bounce back up.  Though we did wait outside for over an hour on Thanksgiving night to get it we should have done that a couple years ago!
This past week we celebrated Daniel's 30th Birthday.  And in the midst of what should be tragic grief we were able to celebrate.  {God's grace}  Sunday at church we sang a new song proclaiming, "Yes, the Lord is good and His love endures.  Yes, the Lord is good forever...."  And I just got this image of God's grace like that trampoline below us.  No matter how hard we fall somedays we somehow bounce back up.  It's ok if I WANT to let myself feel it one day and crash.  Somehow God sends someone along that day to be my trampoline of grace.  To push me back up.  Somehow, beyond expectations we're bouncing along.  Hitting highs & lows and getting right back up, uninjured, moving forward.  {God's grace}

A couple Friday afternoons ago while getting out of the car at Chickifila (of course if you've been to a CFA on a Friday for lunch you'll see the inopportune moment here!) Ryder said, "I just really wish Jesus could heal baby Gibson and then send him BACK to us, because there's so much I didn't get to teach him."  He went on to mumble something about teaching him to walk on a white line.  I think he was looking around the parking lot to think of things he'd have taught G.  I hugged him close, said I understood and felt the same.  Then he said something I hope I don't soon forget.  He said, "I'm just sad."  To which I said, "That's ok."  And then he said, "But I'm not sad all the time, just sometimes now.  Is that ok?"  I smiled (bigger inside than I could manage out) and said, "Me too buddy.  Mommy was sad all the time, but now I'm just sad sometimes.  And that's ok." {God's grace}

Thursday, January 10, 2013

New Years Trip to Rosemary


Daniel & I were so lucky to be able to have a time to go away the week of New Years.  Our awesome friends put things together & our AMAZING parents watched the kids all week (croup, virus & stomach bug and all)!  We went to Rosemary Beach, Florida.  It is gorgeous there, and just quiet enough this time of year to relax, reflect and unwind.  We had absolutely nothing planned and no expectations.  We just wanted to be STILL together - something we had not done in so long.  The past 6 months have been constant chaos, planning & going non-stop.  Before Gibson's birth it was doctors appointments, worrying & planning.  And after it was back & forth hospital visits, shuffling kids, worrying & planning.  
When I started this blog I almost titled it "Gibson's Trip," because I felt like this trip was for him and about him.  He never left the hospital, but he will go with us in our hearts many places moving forward.  Right after Gibson died I immediately wanted to go away - obviously that wasn't an option at the moment, but I knew the first thing Daniel & I needed to do was go be together - and alone if that makes any sense at all.  
We also decided we wanted to take the ashes somewhere beautiful and somewhere that we would visit again as a family & reflect on him & his life together. We haven't talked openly about this until now, but I feel like we have been able to be transparent about everything else and many have told us how much it has helped them in various situations.  So we wanted to share about this as well... Our decision to not have a gravesite was based on a desire for healing for our little family.  (Everyone heals differently.)  And until you're in a situation like this you have no idea the decisions you'll have to make and how you'll have to come to those decisions (so quickly).  We didn't want to take our kids to a gravesite every holiday for the rest of our lives.  We do want to strive to find ways to celebrate Gibson in those moments, but not be tied to the earthly reality of death.  And going back to my previous post, we wanted to find the beauty in this and I've clung to Isaiah 61:3 that says, "For them that mourn in Zion, to give them beauty for ashes, the oil of joy for mourning, the garment of PRAISE for the spirit of heaviness; that they might be called TREES of righteousness, the planting of the LORD, that HE might be glorified." (KJV) 
With that in mind we chose to scatter the ashes in the ocean at sunset on New Year's Eve.  I got pregnant in January so it seemed only fitting to end the year this way.  Not that it's any sort of closure.  But I feel there was some healing that came with that specific timing for us.
All I can say after that is... God is so good.  Daniel & I both agree that after all of this we don't feel the way "the world" thinks we should feel.  We're not angry, we're not mad at God.  We're not reacting the way some would expect.  (Even the way I MYSELF would expect.)  Please, don't hear me wrong, that's nothing that WE'VE done on our own.  It's only by the grace of God and prayers & support of those around us.  But we really do feel like we can walk this out knowing that God still loves us... maybe even more than we knew before.

Rosemary is a beautiful place.  It was a really great trip.   
 Our place
We did a lot of this...
 
 We rented bikes
 And for some reason thought it was great idea to bike 8 miles to Seaside for lunch.  
It was a long ride back!

 Gibson's Sunset
It was overcast and cloudy that day.  I struggled with it during the day praying for a clear "sunset" for our special moment.  In reality it seemed more fitting that it were slightly overcast and there was no clear "ENDING" to the day.  Just as there is not clear ending to Gibson and his precious life and the ones it is still touching.  

 New Years Eve Night
Our last night
 One last sunrise...




Tuesday, January 8, 2013

Gibson's memorial & video

Gibson's memorial was amazing.  Being a week after he'd passed we were secretly dreading the day.  We felt as if each day that week we'd gotten a little bit stronger.  I was worried that the emotions of going through the whole day would just knock me down again.  And yes, it was emotional.  But the best way I can describe the day was Beautiful.  Yes, even in the midst of great loss the beautiful love & grace of God abounded.  We were surrounded by those we hold so dear.  They all came together in an unimaginable way.  Our families gathered around and came from far. My dearest friends from Dallas & Nashville were there.  My MOMS club, our parent's friends, Daniel's co-workers, Gibson's nurses & doctors... the list goes on.  
And our amazing church family came together to honor Gibson and his sweet life in the most touching ways.  The service was just perfect.  They went above & beyond what we could hope for.
The night Gibson died the hospital placed a card with a beautiful tree of life on his door.  It spoke to my heart immediately.  I knew I wanted the service to be focused around a tree and Revelations 21:5, "Behold I am making all things new... these words are trustworthy and true."  From there our extremely talented friend Megan came up with the beautiful tree design.  (She will be selling prints soon for those who've asked!)  We knew what songs had spoken to us and our wonderful worship team (who are dear friends) pulled it all together and honored us with their talents.  Morgan & the team at CCC spoke to our hearts and prayed for us and we were all so moved by the sweet time together.
At the end of the day Daniel & I laid in bed and cried, not out of pain, but out of love.  We felt so completely overwhelmed in the very best way.
The tree


 Daniel's sister Sarah painted this gorgeous tree and everyone was asked to fingerprint and sign in that way.  It is so special to us.  
    
I will share more in the days to come about all who have blessed us so much during this time.

For now we wanted to share the video shown at the end of the service.  This is to the song "Beautiful Things" by Gungor. 


Wednesday, December 19, 2012

A letter to Gibson

Our sweet Baby Gibson went to be with Jesus on Thursday night, December 6th in the comfort of our arms.  He entered this world unexpectedly and left us just about the same.  I vow to blog more in the coming days, weeks, months about the impact he had on us and those around him.  The memorial service was just as beautiful as his little life.  I hope to share more about the service soon as well.

For now, this is a letter Daniel and I wrote to him and read at the memorial service on Saturday:

Dear Gibson,
Your brother & sister already miss you and our mommy & daddy hearts ache for you, love.  When we told your brother and sister you went to be with Jesus they rejoiced.  Ryder said with delight & wonder, “REALLY?”  But then as the tears flowed his 4 year old heart said what we were all really feeling inside, “But we didn’t even get to have him at our home with us.”  Paisley has been thinking of you a lot this week and finally she spoke in her own sweet, calm, assuring way- reminding us all what we needed to be reminded, “Gibson is with God.”  She knows you are being cared for, dear.

You taught us all so much in your short life.
From the very beginning, on this stage while worshiping, God spoke to me through you.  As I felt you move within God began to speak love over me.  Teaching me that His love for me, and my trust in Him was not dependant on outcomes or any prognosis that doctors gave me for you.  That His love for me & for you, sweet boy was unwavering.  You taught us to trust, to hold tight to the grip of God’s hand and the grip of each other, to trust that God’s purpose was greater and IS greater.  And with every little moment that you grasped onto our hands with your tiny fingers we learned to hold even tighter to His. 

Romans 5:5 says, “Hope does not disappoint because God has poured out His love into our hearts.” You son, taught us what Hope truly is as your love was poured into our hearts.  We hoped from the beginning we would hold you... and we did.  We hoped you would be brave... and you were.  We hoped in moments of fear you would fight... and you did. We hoped you would be feisty... and you were, more each day.  We hoped your brother & sister would fall madly in love with you... and they did.  We hoped your spirit would be intoxicating to those around you... and it was.
Even when we didn’t get all that we hoped for in this earthly life for you, our deepest hope was that you would be healed and whole...and now you are.  We hope that your short life points others to Christ... and it does. 

Most of all, you taught us to be thankful- thankful for God’s grace.  Thankful for our family, for love beyond understanding, for all the hard moments we get to spend together.  You taught us to take every moment we were allowed with you and savor it deep in our souls, to soak it in.  At the end of the day to leave the hospital thankful that we saw your piercing blue eyes staring at us and thankful that we had your sweet scent all over us as we walked to our cars with tearful eyes.  Thankful for each of the 108 tangible days we had with you.

And out of thankfulness comes worship.  We named you after a musical instrument and you will always bring sweet music to our hearts.  You taught us what no book, teacher, school or lesson could teach us about worship: that it is birthed out of a deep thankfulness, a brokenness, a need for more, and a deep desire to love and praise the creator of all.  Even when no words come, even when we are stilled before Him we will choose to worship.

Thank you, Gibson.  We are forever changed by you. 
We will love you always.

Saturday, November 10, 2012

Gibson: The First Couple Months.

*If you're just reading this start with the blog below first!*

After Gibson's rocky arrival it became more clear how much about him was UNclear.  So many "anomalies," as the doctors have continued to say, haven't really add up to an overall answer.  The little guy has conquered a LOT in these past few months.  And so have we.  People told us from day 1 the NICU is a rollercoaster.  It's true.  Every single day is an unsure fight for life.  There could be GREAT news or horrible.  You just have to brace yourself.  And walk in with faith & hope.  
There's a term used for nicu babies like him called "whimpy white boy syndrome" (in that they just don't THRIVE!)  Well, Gibson has proven he's a fighter!!!  And although some days it's frustrating that doctors can't  give us an answer... At the same time I'm so thankful that they CAN'T give us an answer!  The doctor told me one day, "Gibson has not been by the book since the beginning, he didn't read the book, he doesn't care that there's a book. He's on his own terms!"  And that's ok with us...

The first few days were the hardest of my life.  After they took him to the NICU I didn't see him for about 15 hours - till the next morning.  (After having the C-section I was hooked up to stuff and could not go there.)  Once I finally saw him he was in the isolate and I couldn't even touch him.  It was unreal. If you are a NICU Mom (which you should receive a serious medal of honor for surviving) all this will sound normal to you, but for me, I'd NEVER even thought of any of this happening or even EXISTING.  It was as if I were in a weird dream looking a the baby that had been in me, but he wasn't quite real because I couldn't even touch him.  He definitely could belong to me?!?  He was born on Tuesday night and I was finally able to hold him on Sunday... One of the most emotional moments of my life...




The first few weeks doctors spent trying to figure him out and assess all of his "issues."  Of course there were immediate breathing problems and he dealt with severe glucose issues for the first 4-5 weeks of life.  An endocrinologist was monitoring him closely and although he was able after about 4 weeks to start maintaining an ok sugar level he may still deal with some glucose issues long term, we are not certain yet.  Within those first weeks they sent tons of testings including serious chromosomal/syndrome testings to the Mayo clinic.  We waited and prayed.  Nothing came back to support the overall issues the doctors were seeing.  He received 2 platelet transfusions and 3 rounds of surfactant (a life saving drug for babies lungs).  He had extremely low calcium levels, hyperthyroidism, some fluid around one kidney, and many other things I was never able to process at the time.  We just took it day by day and tried to just deal with the most pressing problems at hand.  They began to closely monitor & examine his brain and heart problems...

I began to be able to have kangaroo time with him and started to bond.  Part of me was so scared to let myself even become attached to this tiny little human being that had turned our world upside down.

We didn't let the kids meet him till he was a few weeks old...

At 4 weeks he'd just his 4 lbs, was off oxygen support & moved to a "big boy bed" (out of the isolate).  It seemed like a good day in the NICU. 

I left that night about 11pm and the baby I returned to the next day was a VERY different, very sick baby.  He had been placed on isolation in fear of what it might be.  He was back on oxygen support through a nasal canula.  His blood count had dropped drastically over night (to the point that he ended up receiving 2 red blood cell transfusions in the next 36 hours!)  He was covered in a rash under his skin that caused him to look like a blueberry muffin and NO one had a clue what had happened.  He was tested for every possible virus/infection over the next few days.  They did a spinal tap, abdominal scan, MRI, etc.  

BRAIN:
Upon doing that MRI that week the neurosurgeon that had been looking at his brain scans determined he would need brain surgery for aquaductal stenosis and a shunt to relieve the fluid in the ventricles of the brain.  They decided to follow up with another weekly scan the next week and watch the growth of the ventricles.  We prayed some more. :)  After the next scan the Neurosurgeon determined that the ventricles have NOT been growing at a size large enough to warrant surgery!  Praise God!  We are still following up with bi-weekly scans and praying that his head continues to grow at a steady rate and the fluid does NOT.  We will likely follow up with a Neurosurgeon for years to come as we watch and pray about his brain.  Many people have asked (in a round about way) if there is any neurological damage.  That we do not know.  I'd love to be able to say absolutely not.  But that's just not clear at this time.  

In the next weeks he recovered from whatever unknown virus/infection had caused all of that and began feedings.  As he grew older and his feedings continued through his NG - nasal feeding tube we tried to begin bottle feeds and it became clear that there was something wrong there.  The amazing speech therapist spent hours trying out different bottles/methods.  He should be taking about 60mL 8 times a day by bottle and at best he was only able to take 20 twice a day.  They finally did a Barium Swallow Study which found that he has an esophageal problem.  Basically the muscles in his esophagus are too immature to contract strong enough to push the milk completely down.  It is unclear at this time how quickly they will develop.  He will likely  soon have surgery for the Gtube (Gbutton) to feed.
6Weeks:
HEART:
As far as his heart he has had 3 openings in his heart (PDF, VSD & ASD).  2 have closed!  The last has not & we've been told at this point it will not & he'll likely need heart surgery between age 1-2.  It is unclear of the affects it's having on his overall heart function & breathing, but it is being closely monitored by Cardiologists.  Again, praying it closes on its own.  He is also dealing with some pulmonary hypertension that is affecting his heart functioning breathing. Unfortunately pulmonary hypertension is treated WITH oxygen, but his ASD is affected by too MUCH oxygen.  So it's all a balancing act right now.




2 Months:

Last week, at 10 weeks we decided to have Gibson transferred to Dell Children's Hospital NICU to have many of the specialists that were following him begin to monitor his progress and see exactly where he was and what needed to be done next.  He would have to be there to have his Gtube surgery anyway.  The day of the scheduled transport I again walked in to a very different baby.  He'd had a deterioration overnight and was demanding high oxygen levels and eventually had to be intubated to a ventilator.  (He'd NEVER been on a ventilator before.)  We pushed to go ahead and have the transport and they decided he was stable enough to make the move.  Upon arrival at Dell he went through lots more procedures & testings, breathing treatments and another blood transfusion.  It was determined that he had something called Staph Aureus- a staph infection in the respiratory system and possible another sort of respiratory virus causing this sudden set back.  Many other tests have again been sent and we are waiting for results.  
The past 10 days have been rough and he has had a hard time with everything going on, he has been mostly sedated to stay calm through it all.  Being gestational age of 44 weeks now and 7lbs being on a ventilator and staying still & calm was just not feasible on his own.   He is making great improvements and we are hoping and praying for the best.  They say he may deal with this respiratory infection for several weeks to come.  In the mean time the neuro & cardio teams are seeing him regularly and monitoring his brain & heart and the doctors there are searching again for answers to all of his issues and will begin working on feeding again soon.  And to answer EVERYone's big question... NO, we have no idea of any timeline.  He is clearly on HIS OWN timeline. ;)

There is MUCH more I could go into, but that's about as much as I can get into for now!  I PROMISE to keep this updated with Gibson's progress going forward... As for how else this has affected our life and family... well that's many more blogs for many other days! 

THANK you for continued prayers for our little man! xoxo!!!    

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