A Brother's Questions

I can remember when I found out I was pregnant with Jackson.  One of my main struggles was that he would never know his brother.  That he would never realize what an impact Shawn had made on our lives.  I was so wrong.

Daily.

Daily this child speaks of his brother.  It's not as if I discuss Shawn that much, it's just that when I do speak of him, I suppose it makes a giant impact on Jackson's heart.  So many questions that he is trying to find answers to.  And even in his own way, Jackson mourns the loss of his older brother.  

Where is my brother?

Is Shawn in Heaven?

Can Shawn come down and play with me?

Will I be able to play with Shawn in Heaven?

When is Shawn going to come down?

I want Shawn to come down from Heaven!

How old is Shawn?  

But how old is he in Heaven?  

We will see Shawn in Heaven?

When can we go to Heaven?

I admit that these questions leave me a little baffled at times.  I certainly don't know all of the ins and outs of life in Heaven and how long we will all live here on earth before joining Shawn in Heaven.  

I suppose this talk of his brother who died has also influenced Jackson's proximity to death itself.  He is very concerned that Brian or I will die without him.  :(  I hate that his little four year old mind wrestles with these worries.  

I find strange comfort in some other conversations that we've had about Shawn . . . Jackson has told us repeatedly about being "in the boat with Shawn" and that Shawn wanted to hold him.  He has also insisted in other instances that "Shawn wants to hold me!"  I have no idea where this boat incident comes from (a dream?), but I find comfort in knowing that Jackson has somehow figured out that even from Heaven, his big brother Shawn loves him.  Loves him and wants to hold him.  

Why I Still Go to the Cemetery

When Shawn died, I knew that his soul was immediately in the presence of our God.  I instinctively knew that his body had simply been an earthly vessel that was temporary to this life.

But that didn't stop me from loving that physical body . . . one of the three little bodies that is a unique combination of the love that Brian and I share.  

Even in the beginning of my grief, I never made it a habit to visit the cemetery often.  The intellectual part of my being couldn't rationalize spending much of any time at his graveside, and my faith still holds that he is with the Father.

But then there are those days.  Those days when the momma in me needs to mother him.  Needs to do something for him!  Just as I do the small things for Clayton and Jackson, the mother in me craves to do those tasks for Shawn.   But there are no tasks to be done.

No shirt collar to be turned down.  

No mouth to be wiped.  

No boo-boo to kiss.  

No high-five to be given after a job well done.  

No "I love you's" passed in conversation.  

Just nothing.  

Simply put, he doesn't need me where he is at.  He is with the Almighty Caretaker of the universe!

But his momma needs him.  Needs to care for him in the physical ways that mommas do.  I was so desperate in the early years.  I literally pictured myself digging the grave up just so I could hold and touch him one last time.  Just one last "let me make sure you're okay before I leave you on your own" moment. 

I'm certainly past those desperate moments these days, but my idle hands still must do.

For eight years, my Grandmother faithfully renewed the flowers on Shawn's grave.  I asked her in the very beginning to be my stand in because emotionally I simply couldn't handle the task. However, a couple of years ago I felt like I was finally ready to take on the job of keeping his flowers refreshed.  I cried the whole time I was in Hobby Lobby buying the flowers.  But once I was done, I felt a renewed sense of spirit.  I polished his marker and cleaned up the neglected ones around it.  And every few months, I repeat the same little routine.  A time when I can reflect while I let my hands do a mother's work.  

NILMDTS

I mentioned last year that one of my goals as photographer was to eventually give back to my community by serving as a photographer for Now I Lay Me Down to Sleep.  This goal is still never far from my mind.  I still have a few technical things to become proficient at (such a high stress situation will demand me knowing my equipment inside and out), and I've got to prepare myself emotionally for actually putting my name out there as a volunteer.  Time will bring these things, but in the meantime, I continue to sing the praises of this wonderful organization.  The gift these photographers give to parents is absolutely priceless.  In some instances, a literal "lifetime" of images is given to the grieving parents of these children.  

When I saw this video, I knew I had to share--I want to keep telling the world how important it is (not disrespectful or shameful) to photograph these little ones who will never have those regular milestone moments photographed as they grow up.  My photos of Shawn (even if they are just snapshots) are precious to me--proof that he lived and breathed and touched those around him.  

The last family featured in this tribute is the family of Teegan.  Her mom had just signed on as a photographer for NILMDTS and would have never guessed that her first session for them would be her own baby.  

~There is only one beautiful child in the world, and every parent has it~

Family

Clayton's speech therapist often has students interning with her each semester.  And when Clayton meets these new therapists, he immediately turns into The Most Perfect Little Speech Student Ever.  (It doesn't always last throughout the whole semester!).  Yesterday, when Ms. Adrienne introduced him to her new helper, she asked him to introduce himself.  He obliged by telling her his name (and even how to spell it), told her all about Ms. Adrienne's family, and even told her about his own family.  His mom, his dad, and his brother Jackson, and his brother Shawn.  He told her that Shawn was real sick.  

People often ask me if Clayton knows.  I guess they want to know if he really gets it . . . if he gets the whole story.

I think in his own special way he does.  When he woke up on the morning of the 28th, he immediately asked me to take him to the hospital.  He has NEVER woken up with that request!  I asked him if he had dreamed about the hospital and he simply nodded yes.  I think he is more in tune to his history and the miracles therein than we could ever fathom.  

So when you see our family photo, you might only see four people.  But Shawn is there.  His imprint is on the story of our lives, and his spirit weaves in and around us always.  And our love for him radiates as we choose to honor him by moving forward in life.  Love that Clayton definitely understands.

**Photo courtesy of Mandy Haber Photography.  Thanks, Mandy!!

Even The Hard Things

I still remember sitting in the pump room.  It was the early morning hours of the 28th and I had been by Shawn's bedside since around five that previous afternoon.  The doctors urged me to take a break, assuring me Shawn was stable enough for me to be gone for a short time.  I reluctantly went, knowing my body needed the release, also aware that Clayton needed me to keep making milk.  It was the first time I had been alone since being told my baby would die.  I sat there in the quiet of the room, listening to the ho-hum of the breast pump.

Making milk for babies who were too sick to even contemplate eating.

Making milk for a baby who wouldn't be alive in just a few short hours.  

And as much as I held onto the faith that God could heal him at any moment, I started visualizing my son's funeral.  How in the world do you go about planning a funeral for your child?

The one you just welcomed into the world?

The one you haven't even gotten to know yet?

And to this day, the devil plays tricks on me.  Tells me that since I dared to go there in my mind that night, my faith cracked, and in turn the Lord allowed Shawn to die.  Talk about mind games!  I guess as a parent, you just wonder over and over "WHAT COULD HAVE I DONE DIFFERENTLY?"  I look back at those moments and wonder if the Lord thought I was giving up?  I suppose it was the same battle I fight with Clayton's healing, just on a more acute level.  

I cycle through this emotional guilt and then my brain puts on the brakes--I KNOW the Lord works in higher ways than this!  As my friend Karen reminded me:  "Romans 8:28 is STILL IN THE BOOK."  All things, [even the hard things] are working together for the good of His people!  And what a celebration it will be when we see the good of sufferings like these revealed!    

I guess my time alone that night/morning was what you'd call a gut-check.  I could either simply collapse under the emotional weight of it all, or I could go make the most of what I had been given.  I had to trust the Lord would carry us through.  I left that pump room determined to love on my son as much as possible in the time I still had with him.  And that is what I did.  

Blessed Are Those Who Mourn

Our choir sang for a memorial service at ACH yesterday.  This is the second time we've done it for them.  The first time we sang was a couple of years ago and Brian and I both were overcome with emotion.    So while I knew what was coming, the grief still crashed into me like a tidal wave.  Everyone would have understood if I had bowed out, but I always feel this yearning to reach out to other parents, even if it means wading through my grief once again.  And although I'm emotionally drained from the entire program, I feel like opening that wound is a small price to pay if it means even one newly bereaved parent was comforted in that place.  

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.  If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.  2 Corinthians 1:3-7 (NIV)

I'm still amazed though, how the "stages of grief" cycle in and out of my life, none in the right order, some repeating themselves over and over.  There is no rhyme or reason as to what brings on certain feelings or memories, but I'm learning more and more how to just let the feelings flow out of me through the tears.  Eventually the tears are dried by the Heavenly Father . . . dried as I am reminded of the promise of Heaven.

Blessed are those who mourn, for they will be comforted . . . Matthew 5:4 (NIV)

Shooting Towards a Purpose

The first time I was introduced to the world of photography (the world of shooting in "manual" mode, that is), Brian was behind the camera.  He was a film shooter of course, and he had me intrigued with the options of stepping into the creative side of photography.  During that summer of 1996, he tried his best to explain the ins and outs of the exposure triangle, but I suppose my love sickness got in the way of me actually taking all the information in . . . so although I continued to use his fancy SLR cameras, I had no idea what I was really doing with them, nor did I realize the potential of shooting manually.  

Fast forward to August 2003.  The night Shawn was dying.  Thankfully, I had quickly gotten into the habit of carrying our camera and rolls of film every trip into the NICU, and I had it that night.  We snapped photos of the last hours with our son in what would otherwise be known as horrible lighting and photographic conditions.  It didn't matter--we wanted to freeze those moments in time so that we could have them forever.  The importance of us having our camera with us that night really hit home when we were taking care of Shawn after he actually passed.  The nurse urged us to enjoy these moments and take as many photos as we wanted, both for our sake and for Clayton's in the future.  She offered the use of the NICU camera and my mouth dropped open.  It was a polaroid.  

Let me repeat.

In the year 2003, all they had to offer parents who had suddenly lost their child was a polaroid camera.

Can you imagine if the only pictures you had of your child were one or two snapshots taken with a polaroid camera?

Some of those infant deaths happen so quickly (we luckily had a few hours to prepare), that many parents don't have a chance to use anything other than what is available at the hospital.  It really bothered me that many parents walked away with just these couple of snapshots of their sweet baby.

In the months afterward, it bugged me to no end that our pictures of Shawn after death (the only ones that show his face without the ventilator tubing) showed the discolorations brought on by the infection and many medications that were injected into him.  Moreover, I regret every. single. day. not taking photos of him at the funeral home when all of that had been removed and his precious body was just that of a beautiful baby.  

It was in 2005 that I started scrapbooking, and I became immersed in the world of memory keeping.  I was exposed to mother after mother who not only created beautiful art with paper, but took some pretty inspiring photos of their children to boot.  I started getting just a bit more serious about my pictures.  We bought our first digital camera and I went to town snapping photos.  It was also around this time that I became aware of the national organization, Now I Lay Me Down to Sleep.  At the time, they had no members in Arkansas and I had the fleeting thought that maybe one day I could perform that service for parents who had or would suffer infant loss.  But I knew that I was no where near good enough to volunteer. It was just a seed of an idea that was planted in my mind.  

In 2009, I decided, in my usual fashion, that anything worth doing is worth doing right.  We upgraded our camera and I was determined to learn all there was to know about shooting manually.  I've learned so much over the past two years--constant study and practice has continued to help me improve my photos.  The cool thing is, I've just touched the tip of the iceberg!  The world of possibilities is endless when it comes to creating beautiful photos.  And as my skills have improved, that little kernel of an idea--of helping NILMDTS--has begun to sprout.  

It was just last week that I was reminded of how much I want to help parents in this way.  I learned of two infant deaths, one stillbirth and one just hours old.  Oh, how I wish I could have been there to document the few hours these families had with their angels!  Not only document it, but document it with more than just snapshots--document it with beautiful family photos that would truly be timeless!

I have such a long way to go.  A lot to learn about shooting in low lights and becoming confident enough in myself to offer my services.  Not to mention being emotionally ready for the onslaught of memories I would relive each time I shot one of these sessions.  But in my mind, I keep thinking what's wrong with a few tears and remembering such a special time in our life . . .  especially if it means I'm capturing that special moment for another family?  

So it is with this as one of my goals I continue to push myself.  Push towards becoming better and better with using my camera as my tool--my tool to capture priceless memories for not only the living, but the dying as well.  

And who knows? Maybe you have come to the kingdom for such a time as this and for this very occasion . . . Esther 4:14b

In Heaven

Joy pulsated through me as I looked around, and at that moment I became aware of a large crowd of people.  They stood in front of a brilliant, ornate gate.  I have no idea how far away they were; such things as distance didn't matter.  As the crowd rushed toward me, I didn't see Jesus, but I did see people I had known . . . their presence seemed absolutely natural.  

They rushed toward me, and every person was smiling, shouting, and praising God.  Although no one said so, intuitively I knew they were my celestial welcoming committee.  It was as if they had all gathered just outside heaven's gate, waiting for me . . .

 . . . and as I stared into his face, an ecstatic bliss overwhelmed me.  I didn't think about his . . . death, because I couldn't get past the joy of our reunion.  How either of us reached heaven seemed irrelevant . . .

 . . .When I attended his funeral, I wondered if I would ever stop crying.  I couldn't understand why God had taken [him].  Through the years since then, I had never been able to forget the pain and sense of loss.  Not that I thought of him all the time, but when I did, sadness came over me.

Now I saw [him] in heaven.  As he slipped [his hand in mine], my pain and grief vanished.  Never had I seen [him] smile so brightly.  I still didn't know why, but the joyousness of the place wiped away any questions.  Everything felt blissful.  Perfect . . .

~from 90 Minutes in Heaven by Don Piper

33/52 Slow Down and Look Back

Can't Help But Look Back

This week's theme was easy for me.  I spend each month of August struggling through the "what-ifs" related to Shawn's death.  My mother's heart still wants to "mother" him and my hands are left idle in this regard . . . eight years and it still hurts.  

The Dichotomy of LIMBo

Bitter.

Sweet.

As a parent who has experienced a Loss in Multiple Birth (LIMBo), these words are never far from my mind.  When I think about Shawn's death, I wallow in self-pity, begging God to turn back the clock--let me hold him one more time!  let me tell him I love him just once more!  I beat my head against the wall wondering what I could have done differently to stay pregnant longer, and in turn given him a fighting chance at life.   And in spite of myself and the years that have passed, I still ask WHY?! 

And then.

And then, I look at this precious face.

How blessed I am!  How incredibly precious Clayton is to me!  This little boy is proof that modern day miracles happen.  He is proof that God heals our hurts in more than one way.  After Shawn's death, Clayton gave me a reason to get up each morning.  A reason to keep moving and breathing.  And in the years that have followed, I have needed only to look at his smile and my tears dry up.  How can I weep when his beautiful face is looking up at me?  I am blessed indeed.  

August 28

I've written and rewritten this post in my head a hundred times in this last week.  And as I sit here tonight, I'm just numb.  The tears still flow freely, even after seven years.  I pray all the time that I will "get used to it."  But in some ways I'm quite selfish about the whole thing.  I don't want to get used to it if I'm being completely honest.  I am literally scared to death of forgetting; but mostly scared to death that "getting over it" means leaving Shawn out of my life.  And I just can't leave him.  I suppose I've learned to maneuver around the pain in general, but every single day still brings small reminders that one of my sons isn't here.   

But as painful as the hurt is here on earth, I am thankful every day that I'm one day closer to a reunion with Shawn.  Oh, how I ache for that embrace!!!  There is a song I sing quite often, "I Bowed on My Knees and Cried Holy."  I practiced it for over a year before I ever performed it because it is so powerful.  And in the past couple of weeks, I've been reminded of the beginning of the second verse and the images it conjures up in my head:

And as I entered the gates of that city,

My loved ones, they all knew me well!

They took me down the streets of Heaven.

Oh, the sites were too many to tell!!

And as I sing those lines, this is what I see and hear:

As I walk into the gates of Heaven,

Shawn comes running, grabbing my hand and pulling with all of his might.

"Momma!  Momma!" he cries!

"What took you so long?!  I can't wait to show you all the neat stuff they have here!"

That is my hope.  That is my promise.

Therefore my heart is glad and my tongue rejoices; my body also will rest secure,

because you will not abandon me to the grave, nor will you let your Faithful One see decay. You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.  Psalm 16:9-11

One Little Candle

That one little candle was just Momma and Daddy's way of saying we wish you were here.  We love you, Shawn.  How I wish I could wrap my arms around you as I say those words!

Seven years and my heart still aches for mothering left undone. 

Every August, Every Year

I spend the whole month of August every year reliving Shawn and Clayton's birth.  I still can't get over the shock of how our lives changed over those hours of my labor. 

If we look scared to death, it's because we were. 

He's On My Mind

It all started last week when Brian and I were discussing Jackson's ears. Where in the world does he get them, we wondered?? I mentioned to Brian that I remembered looking at Shawn in his coffin wondering the same thing. Why do his ears stick out? I thought to myself. So to remind Brian, I went on a search for a picture of him from straight on that would show his ears sticking out a bit like Jackson's do. But instead of finding a picture, I just got sad and ANGRY. That's my usual emotion associated with Shawn lately. It just ticks me off so bad. I have no idea what stage of grief that is and why I've migrated back to it, but I'm there. Why did he have to spend his whole little life hooked up to all that crap?!!! Why did he have to live his short days in the enclosed environment of two NICUs? Why can't I have a normal picture of him instead of a picture of all this tubing, that just happens to have a little person somewhere in there? Ugh. It makes me ill to think how unfair it is. And yes, I am aware that life isn't fair.
And then on Sunday our choir sang at a memorial service at the hospital for kids who have passed away this year from cancer. I didn't have to do it, but I wanted to. It did come with emotional consequences for me though. Brian and the boys came along and it was extremely hard not to just break down and bawl. The only reason I didn't was because of Clayton (he would have gotten scared if he had known I was crying). Brian was doing his best to keep it together as well. I had to totally avoid looking at him while we sang our song because he was back there just about to lose it--it was so, so tough.

I'm also reminded of our loss since the holidays are coming on. I often wonder if anyone else at our family gatherings realizes I see an empty chair during our meals? I guess if they didn't, they know now . . . It's like year after year, my child doesn't get to make it back home for the holidays while everyone else's is there. And now that Jackson is here, it seems even more magnified in my mind. I guess when I'm eighty I'll still be missing my baby. It's just so opposite of what nature intended. A mother is supposed to mother. How do you mother a child who's in the grave?

The Lord Works in Mysterious Ways

Today is the day I dread all year. As a matter of fact, I usually pray my way through all of August--any day after the tenth has always been a struggle. This year, I've got a new (and very sweet) distraction to keep my mind busy--no time for reflections or memories this go-around! On one hand, I'm grateful to just let the time fly by; on the other, I've been scared to death I'd let the anniversary pass without a single thought of Shawn and our time together. It's almost like I need the time to remind myself of the cherished moments we had with him, to remind myself of the amazing gift of life God gave us. But this new gift of life is part of the answer to those last six years of prayers. Jackson's birth has brought so much healing for me--I've finally been able to unload some of this incredible guilt I feel for not being able to do enough for Shawn and for Clayton. I have a long way to go, but time is finally giving me the perspective I've needed.

Holding you, I held everything.

Everything pure, everything innocent.

I held all that is new and fresh, yet still sentimental.

Holding you, I held my greatest joy and my greatest sorrow.

And while holding you, I began to learn what it meant to "Praise Him in the storm."

The hurt has been hard, but those moments with you were worth every tear shed and every heartache felt.

I love you always.

Mommy

He Looks Like His Brother

And I don't mean Clayton. Oh, for those first 24-48 hours we oohed and aahed over how much he looked like Clayton, but I think it was only his mannerisms that were reminding us of Clayton. It didn't take long after getting him home for Brian and I to realize that he looks exactly like Shawn. (Especially when he's sleeping since Shawn only opened one eye briefly for us to see). And we aren't the only ones noticing. Friends and family alike who have seen pictures of Shawn or saw him in person recognize it right off without us even suggesting it.

I can't even describe the emotions. At first it was overwhelming sadness. And then the new round of WHY? WHY? WHY DID HE HAVE TO DIE??!! Just when you think the scab on the wound is healing up nicely, something reminds you of the hurt and the scab gets ripped right off again. And it ticks me off in the worse way because sweet little Jackson will never know his oldest brother. And for that matter, I get mad all over again that Clayton won't know his own twin. And then it just got plain eerie the first morning Clayton and Jackson were sleeping in the bed next to one another. It was as if Clayton was laying next to Shawn who had never aged. Twice I've even called Jackson Shawn. It must be a totally subconscious act since I didn't even realize I was thinking of Shawn at the moment.

I've since gotten over the initial shock of it, but like my other emotions dealing with the twins, the underlying feeling is just that of bittersweetness. Blessings on one hand with heartache in the other. Blessed with another beautiful boy, heartache of missing my oldest.

I am the mother of three very special baby boys.

The Back of the Closet

The struggle is never too far away . . . just putting it on paper:

May 12, 2009

Four sets of coordinating outfits. I bought two of them myself soon after finding out I would be having twin boys, the others gifts from Allison and GrandMother. And six years later, they still hang in Clayton's closet. With the new baby on the way, I've managed to pack most of Shawn's things and even managed to {reluctantly} relinquish them to the attic. But this last reminder of what was to be I just can't put away. In those clothes, I see a promise of a special relationship--one we'll never see come to pass. I just hope Clayton doesn't think I'm too crazy if they're still there when he's 18!

I Never Imagined: The Story (the beginning anyway!)

In the past few months, I've had several new readers visit my blog. I'm making new online friends through a Cerebral Palsy support group and lots of visitors are coming by way of these new photography challenges I'm participating in. And since I've found that several of them are curious about Shawn and Clayton's story, I've decided to repost my "I Never Imagined" album that I made way back in 2005. So many things have changed since then--my scrapbooking style for one (some of these pages are dorky looking I know!!), but mostly I've learned that my perspective is ever evolving. But despite that, my journaling in this album is definitely a record of all that happened beginning August 10, 2003.

In the Spring of 2003, Brian and I learned that we were going to be the parents of twins. Not long after that, we were told that both babies were boys—twin boys! What a blessing! We knew our lives were in for a big change. But when the twins were born four months early (24 weeks gestation) on August 10, 2003, we never knew just how drastic the change would be. Shawn Phillip weighed 1 pound, 12 ounces and was 12 inches long. Clayton James weighed 1 pound, 8 ounces and was also 12 inches long. On that day our seemingly normal existence became the uncertain road that we now call our life. Both babies were extremely sick and every day presented new challenges—from brain bleeds to collapsed lungs, they battled it all. Clayton was the sickest of the two—his condition seemed to waver between near death and not so near death. Shawn had bleeding in his brain, but seemed to be more stable. It was such a surprise when the doctors called us to the hospital on August 27 to tell us that Shawn had contracted a staph infection and they didn’t expect him to make it. We spent that night holding him tight and praying desperately for healing. Despite everything, we had to say goodbye to Shawn on August 28 at 9:35 a.m. Clayton continued to battle for his own life. He had many surgeries and contracted several infections. We lived in fear of losing him too. But finally, after six and a half months in the NICU, Clayton came home to us. He weighed just over 8 pounds and was still very sick. We made many more trips to the hospital over the next six months. Although Clayton is now stable, our life is far from normal when compared to most families with a two year old. This is just a glimpse of the life that I NEVER IMAGINED.


On the night of August 8, 2003, I couldn’t sleep. I couldn’t get comfortable in the bed and even tried sleeping on the couch. When I woke up the next morning, I thought nothing of it until I discovered I was bleeding. After calling my doctor, husband and mom, I went to the hospital—never returning to what I now call my “former life.” My labor progressed despite doctors’ efforts. My twins were determined to come out into the world no matter what. I was transferred to University of Arkansas for Medical Sciences in Little Rock because they are leaders in taking care of preemies. I ended up undergoing a caesarean section because one of the babies was transverse. On August 10, Shawn Phillip was born at 1:32 a.m. He weighed 1 pound, 12 ounces. Clayton James was born at 1:36 a.m. and weighed 1 pound, 8 ounces. Both babies were 12 inches long. They were so sick and because they were born so early (24 weeks gestation), we were told they had a 1-2% chance of living. We were constantly praying that God would help them survive. We began living hour by hour as their conditions seem to change constantly.



Shawn’s Battles: • Respiratory Distress • Intraventricular Hemorrhages • Collapsed Lung • MRSA (Methicillin-resistant Staphylococcus Aureus)




Clayton’s [Major] Battles: • Respiratory Distress • Pulmonary Hemorrhage • Intraventricular Hemorrhages with Hydrocephalus • PDA Ligation • Perforated Bowel • Necrotizing Enterocolitis (NEC) • Retinopathy of prematurity (ROP) • Bronchopulmonary Dysplasia (BPD) • Osteopenia • GI/Feeding Issues • Shunt malfunctions • Hernias • Airway Blockages • Delayed Development


After being at the hospital all day on Wednesday, August 27, I got a call from the resident taking care of Shawn and Clayton. He said that Shawn was sick—real sick. His actual words were “we’re not doing compressions yet, but it’s getting close.” I almost fainted! I had seen Shawn less than an hour before and he seemed a little pale, but otherwise fine. I was literally scared to death and went into a panic. I had trouble getting a hold of Brian and that made my panic even worse. Eventually I got him on his cell phone and I went to pick him up so that we could rush to the hospital. I was so scared that my baby was going to die before I could hold him and love on him. That was the only thing I could think about. When we finally made it to the hospital, there was a lot of activity at Shawn’s bed. We were told that he had contracted a staph infection that was deadly to him—there was no antibiotic to combat it. Shawn was pale and his heart rate was up. His blood pressure and oxygen levels were falling. The doctors had no idea how long he would live, but they told us that it was probably a matter of hours before he died. We were in complete shock—God would surely not take our baby. We were “good” people, bad things can’t happen to us. We began to pray. Everyone on our church’s prayer partner list was praying too. As Shawn’s condition worsened, we called our pastors in to pray over him and anoint him with oil. We were doing exactly what the Bible says to do in this situation. We just knew that God would honor our prayers and faithfulness. But Shawn just kept getting worse. Eventually, the doctors decided that it was time for me to hold him. As I held him, all I could do was sing to him. I wanted him to know how much I loved him. I had to pack so much love into these few hours. As I sang, his stats actually became better and leveled out. The doctor smiled and said that Shawn liked being held. He did. And I loved holding him. He was doing so good that we decided to try a couple of more medications which meant putting him back in his bed. As soon as he was back in his bed, his condition started to deteriorate again. So Brian and I started taking turns holding him. We took pictures with him and just tried to savor what little time we had left with him. All night, we took turns just holding and loving him. His oxygen level just kept getting lower and lower. And his kidneys were failing—his diaper had been dry for hours. His poor little body was swollen and purple from all the fluid and medicine that had been pumped in him. At 9:35 a.m. on August 28, Shawn’s monitors were blaring and blinking zeros. Zero heart rate. Zero oxygen saturation. I looked at the nurse and asked her if it was real and she said yes. We could hear the liquid in his lungs. The medicines had saturated his whole body. As the doctors were working furiously, Brian and I just kept kissing Shawn and telling him how much we loved him. We wanted him to know that he was and will always be loved. I only hope that our voices were the last thing he heard.

As I held Shawn for both the first and last time, I sang these words to him: Before you had a name, or opened up your eyes, Or anyone could recognize your face; You were being formed, so delicate in size, Secluded in God’s safe and hidden place. With your little tiny hands, and your little tiny feet, And little eyes that shimmer like a pearl; He breathed in you a song and to make it all complete, He brought the Masterpiece into the world. You are a Masterpiece, a new creation he has formed. And you’re as soft and fresh as a snowy winter morn. And I’m so glad that God has given you to me. Little Lamb of God, you are a Masterpiece. ~from Masterpiece, by Sandy Patty~

On August 30, 2003, I buried my first born. I made it through the service relatively well. I was basically numb and also still worried about sick little Clayton in the hospital. But as time has passed, my real grieving has begun. I miss him. I miss seeing what he would have become. He was named after my father. He had my long legs. He had my big toe. He had his father’s strawberry blonde hair. What would all of those things become in the future? I suppose I grieve mostly for myself simply because the future I looked forward to has changed so much. I shouldn’t grieve for Shawn. He is completely healed and living in Heaven awaiting our arrival. But it’s hard to look at it in such a positive way when you feel so cheated. Would he have been tall like me or shorter like his Daddy and brother? Would he have liked music as much as Clayton? Would he have been a wakeboarder like Daddy or a slalom skier like Mommy? Would he have been a risk taker like Daddy or a rule follower like Mommy? All of these questions have no answer. We buried them on that day along with his body. I suppose I will never get over his death, but I am learning to work through my grief instead of letting it stop me in my tracks.




When the boys were born, doctors estimated they would be in the hospital three or four months. But they never expected Clayton to develop every complication and infection that preemies are prone to! One doctor told us we had a better chance at winning the lottery than having a child with all the conditions and illnesses Clayton had! Since Clayton was in the hospital for so long, I developed a very boring daily routine. Visiting hours didn’t start until twelve noon. This was perfect for me because I’ve always been a late sleeper. When I was finally ready to go, I usually picked up my mom on the way to the hospital. We would spend the afternoon with Clayton and then try to head home around five or six. Then, if Brian wasn’t too tired, we would head back to Little Rock for the night so that Clayton could have some “Daddy time.” Brian was always so worn out from working all day that I would have to drive us home late at night. My nights were horrible—I couldn’t sleep at all for thinking about Shawn or worrying about Clayton. I would usually just stare at the television until my eyes finally closed from exhaustion. Every once in a while, I would take a break from my routine. Clayton had five primary nurses (unheard of in the NICU), so I basically knew who was taking care of him at all times. If I was extremely tired or just stuck in a depressed mode, I would call them and tell them I wasn’t coming that day. I just felt so blah some days that I couldn’t even get out of the bed. I was lucky to have such an awesome team of nurses taking care of Clayton—it was so nice to lean on them and trust them with his care. Eventually, as Clayton got better and better, I felt I needed to be with him all the time. He was becoming more aware of his surroundings and he wanted to be out of the bed a lot more. I wanted to be the one holding him and talking to him. I wore myself out and put a lot of miles on my car going back and forth to the hospital, but it was well worth it. Clayton knew exactly who I was and when he finally came home, he looked to me—HIS MOMMY—for comfort.

After 196 days in the NICU at Arkansas Children’s Hospital, Clayton came home to us on February 21, 2004. We had waited so long for this day that it almost seemed surreal. I can’t even say that I was excited—I was more in the mode of “JUST GIVE ME MY BABY SO I CAN LOVE HIM AND TAKE CARE OF HIM!!” I was tired of having an audience when I was with Clayton and tired of only being able to spend our quality time in a noisy intensive care unit. Clayton had been at the hospital for so long that I felt like I was sharing him with too many other “mothers.” Everyone at the hospital loved him and spoiled him rotten, and I’m thankful. But I had come to the point where I was tired of sharing and I wanted to be the one in charge of Clayton’s caretaking. Clayton didn’t get to stay home long before he had his first relapse (four short days), but it sure felt nice to hold him when I wanted instead of just during visiting hours.

Clayton spent a total of three months on the ventilator. One of the major side effects and setbacks for “ventilator babies” is an extreme oral aversion. We didn’t see this at first with Clayton, but over time his mouth became more and more sensitive to any touch. I pumped my breast milk for five months in the hopes of finally being able to feed Clayton myself. The doctors encouraged me since this was the one thing that only I could do for Clayton. When he first began to take milk Clayton was fed through both an OG (oral-gastric) and NG (nasogastric) tube. These were just small tubes that went down Clayton’s throat and into his stomach. Eventually I was given permission to try and breast feed. I was literally scared to death! I had developed quite a relationship with my little breast pump, but feeding a baby was going to be unpredictable! Clayton seemed ready to eat although his sucking and swallowing abilities were not very good. And as the days passed, Clayton wanted less and less to do with breastfeeding. I was heartbroken. I had pumped for so long just for this chance and he couldn’t do it. But I kept telling myself that the milk was what was important (the doctors insisted that breast milk is the best for babies) and we started trying bottles of breast milk. Again Clayton showed positive signs and ate from the bottle. But just like before, he started gagging and choking on the milk. His whole suck, swallow, breathe mechanism in his body was messed up. He just couldn’t handle doing all three at once. After lots of prayer and debate and horrible feeding sessions, we decided to give permission for a g-tube (gastronomy tube). This is a tube that is placed directly into the stomach so that the mouth can be bypassed all together. G-tubes are commonly called buttons, so I guess you could say Clayton has a belly button and a feeding button! Currently, Clayton is fed three ounces an hour for 16 hours a day. He is fed a special prescription formula because we have since found out that he is extremely allergic to milk. I mix the formula in bulk and it is pumped into his stomach over time. His button has to be cleaned very well because it will start to smell from all the gastric juices in his stomach. I also keep gauze wrapped around it to keep the juices from leaking out. Tube feeding is not as bad as I thought it would be, but I guess I’ve gotten used to it. The only annoyance is dragging that cumbersome pole around the house and the times when the button actually pops out of Clayton’s stomach. We are able to replace it ourselves, but it makes a huge mess. Clayton is slowly showing signs of wanting to eat orally and works on this with both us and his therapist. Eventually he will eat on his own, but we have a long road ahead of us.
One of the major risks for premature babies is Intraventricular Hemorrhage. The blood vessels in their brain are so delicate that they burst and bleeding occurs in the ventricles of the brain. This happened to Clayton on his fifth day of life. He had grades three and four bleeds (four being the worst). As the blood dissolves and breaks down in the ventricles, it starts to block the natural flow of cerebrospinal fluid (CSF). Normally the CSF flows from the ventricles down through the spinal cord and is absorbed by the body. This is a natural cycle that occurs in everyone’s body. Clayton’s body seemed to handle the bleeds well at first. His ventricles stayed a normal size for quite some time before we started to see problems. But after about a month, his ventricles started to enlarge because the CSF wasn’t flowing out. The neurosurgeons started doing daily spinal taps to help move the CSF. Eventually even this stopped working. The doctors had to start drawing the CSF directly out of Clayton’s head with a super thin needle. This was risky because the needle was inserted directly into his brain. Because the draining was having to be done more and more often, we were told that Clayton would need a shunt placed in his head. As parents, we were extremely stubborn about the shunt. Shunts are a lifetime thing. We were told by doctors that they don’t always work well and that revisions would need to be done from time to time. We felt like we were setting Clayton up for a lifetime of surgeries. But what were our choices?? If Clayton didn’t have the shunt, his head would continue to grow and grow (since his bones hadn’t fused yet). We reluctantly agreed to the shunt. After we agreed to the surgery, we started praying. We asked everyone to pray that the Lord would heal Clayton’s little brain so that he wouldn’t have to have this surgery. And it seemed to work!! Clayton stayed sick for so long that he couldn’t go into the operating room. Every time a surgery was scheduled, Clayton would get a new infection. We hated to see Clayton sick again, but we just knew God was answering our prayer! The surgery was scheduled and cancelled two or three times before we had another major talk with the neurosurgeons. We asked the doctors to give Clayton one more chance. They were draining his brain less and less, so they agreed to give him a week to see if his ventricles could handle the draining on their own. We were so hopeful, we just knew God had put this surgery off in order to perform a huge miracle. But we were wrong. Clayton’s body just couldn’t handle moving the CSF on its own. His ventricles were still enlarged and it seemed they would never actually work on their own. So on December 26, 2003, Clayton had a VP (ventriculo-peritoneal) Shunt placed in his head. This shunt drained the fluid through a tube and down to his abdominal cavity, where it was absorbed by the body. But that is only the BEGINNING of the story!! Just a month after the shunt was placed, it malfunctioned. Brian and I were so disappointed—this was what we had feared would happen. Clayton had his first shunt revision before he ever even left the NICU. His second revision was just five days after he came from the hospital! We couldn’t believe it—our worries were becoming a reality. Clayton ended up having three more revision surgeries before doctors decided that something needed to change. Clayton’s abdominal cavity was full of scar tissue from his other surgeries (for his GI problems) and there just wasn’t any place for the CSF to drain. That is why the shunt kept clogging up. Doctors recommended replacing Clayton’s VP Shunt with a VA (ventriculo-atrial) Shunt. This shunt’s tubing drains the CSF into a vein. The CSF enters the bloodstream and is eventually pumped throughout the body and absorbed. This shunt is risky, because any infection can be dangerous since it is in the bloodstream. But we really had no other choices. We consented to the VA Shunt. The VA Shunt was an answer to prayer. Clayton hasn’t had any shunt-related problems since it was placed! At his last neurosurgery check-up, the CT Scan showed that his ventricles were smaller than ever—this means the shunt is working beautifully! We have finally gotten used to being at home instead of making frequent trips to the hospital for another surgery. Clayton is getting the chance to grow and develop without having to constantly recover from surgery.

Because Clayton’s lungs were so underdeveloped when he was born, he immediately went into what is called Respiratory Distress Syndrome. As a direct result, he developed a chronic lung disease known as Bronchopulmonary Dysplasia. He will have to deal with BPD for many years to come. Every other Wednesday, Clayton’s empty oxygen tanks are picked up and new ones are delivered. There are three different sized tanks. The largest tank is for use at home. The other two are for going out and about. We also have a machine that separates oxygen from normal room air. We use this machine when Clayton needs a higher oxygen flow. Clayton’s oxygen is delivered to his lungs through a nasal cannula. It needs to be changed at least every two weeks, and sometimes even more often. It just depends on the level of Clayton’s nasal secretions (A.K.A. SNOT). Lately the cannula has become a nuisance in Clayton’s opinion, so it is a constant battle keeping it in his nose. His new game is to pull it out just so we can put it back in his nose. He does it over and over again until we find something else that grabs his attention. He’s definitely being a typical two year old when it comes to this mischief!

Every night, I put this monitor on Clayton’s foot. It measures his heart rate and the amount of oxygen saturation in his blood. A good saturation level is anywhere between 95-99%. Clayton’s pulmonologist is happy if he stays above 92%. We get the best reading when Clayton is completely still, so I like to use it when he’s tired or asleep. The alarm will beep (loudly) if he falls below 90%. This happens a lot since Clayton pulls his cannula off during the night. The alarm can get very annoying—going off when he moves or when the probe comes off his foot. It goes off so often that I can reach over and silence it, then put the cannula back in Clayton’s nose all without ever opening my eyes! But as annoying as it is, it’s still a necessary evil for the parent of a child with lung disease.

Clayton loves to take a bath, but it can be hard work for the person giving him one. For several months we used an infant bathtub, but Clayton soon grew out of it. It became impossible to bathe him AND try to hold him up out of the water. I was so glad to see this bath chair arrive—we have a much easier time bathing Clayton these days.

When Clayton first came home from the hospital, he had two or three doctor’s appointments a week. There were so many doctors taking care of Clayton that I had to pay close attention to everything—I was their connection to each other. Thankfully, Clayton’s health is no longer so critical that we have to see doctors weekly, but we still have appointments monthly with specialists for his longer term problems.

Here I am, a healthy 29 year old, and I drive around with a “Handicapped” tag hanging from my rearview mirror. When Clayton first came home, I was reluctant to get one of these for my car, but as he grew it became harder and harder to move him around and I decided that I could use one! It helps so much to have the extra space a handicapped parking spot provides—I need it while loading Clayton and all of his stuff in and out of the car. I never thought I would be thankful for something as simple as a handicapped tag, but I am!

Clayton has therapy eight times a week. The therapists come to our house since Clayton is on oxygen and since he has so many therapy sessions. The main goals are to help Clayton learn to communicate, eat on his own, and become ambulatory. He has accomplished so much in the last year and a half, but he still has lots of hard work ahead of him. We know he can do it!

Clayton has so much stuff! We are so thankful that so many therapeutic devices are available today. We have seen major progress after using this equipment. And he is such a good sport about being strapped in—he loves to sit and stand—he gets a whole different view of the world!

On Clayton’s second birthday, his wheelchair was officially ordered. I never thought I would be so glad to see a wheelchair brochure! Clayton is getting heavier and heavier and he is very close to growing out of his stroller, so a wheelchair is definitely what we need. If we go anywhere for any length of time, Brian and I have to share the load (literally) because Clayton is basically just dead weight. My back hurts almost all of the time now and I’m sure it’s from carrying Clayton (and his oxygen and his feeding pump). And although I was so glad to see the order form, I immediately started crying the minute the therapist left the house. It was definitely a reality check for me as a parent. My child can’t walk and run like other kids. He is totally dependent on others for his mobility. The day we ordered the chair was the day that this actually sank in for me. The good news is that Clayton may not always be in a wheelchair. He shows lots of potential for walking with a walker and maybe eventually unassisted.

When I finally came to the realization that Clayton’s disabilities were not temporary, but a long term issue, I was extremely disappointed and very jealous of my friends and their families. I thought we were destined for a life spent isolated inside our house and that Clayton would never enjoy activities that other children do. But I was wrong. We have done our best to expose Clayton to a variety of places and activities. He has been to Colorado, Las Vegas, and even the Grand Canyon. He’s made a couple of trips to Florida to see family. He loved sitting in the sand on the beach and soaking in the ocean. We also have a boat and he’s been to the lake several times. In fact, we spent most of the summer weekends on the boat and Clayton absolutely loved it! He laughs and screams while we go across the lake—he loves the wind and all the bumps from the waves. He also loves to just relax in the water—he gets so relaxed that he has almost fallen asleep in his little floaty boat! It’s quite a job to haul all the stuff that we need when we go somewhere with Clayton—the car is usually packed to the gills and we can barely fit ourselves in—but it’s all worth it just to be able to see the smile on Clayton’s face when he discovers something new that he enjoys. We’ve also tried our best to get Clayton around other kids. He has cousins to play with and lots of other kids at church that he can play with. He’s really not able to play with them, but he can watch. I’m hoping that watching other kids move around will help keep him motivated to become more independent. I do still get down sometimes. If we’ve been with our friends and their very active toddlers, I come home and get really sad. It’s depressing to see all those other kids running crazy and Clayton’s just sitting and watching. But no matter how hard it is for me, I’ll keep exposing him to other kids and their toys and games, because I know he learns from them and enjoys watching them. Music is what Clayton enjoys the most. I never thought that we would get so much pleasure from singing and playing music, but it truly is his favorite thing to do. He squeals with delight if his daddy plays the guitar and even plays his own little guitar right along with him. Clayton can spend hours listening to the guitar and loves to listen to people sing. He even likes Karaoke! We’ve used our Karaoke machine at get-togethers and Clayton loves to listen to all the music. We’ve learned to work around Clayton’s disabilities. Things may be harder for us to do, but we can still go anywhere and take Clayton along with us for the fun.

It’s been a little over two years since the boys were born. I still find myself going through the roller coaster of emotions that come with grieving the loss of a child and our loss of “normalcy.” I get angry, sad, lonely, and I am forever asking the question, “why me, Lord?” I spend a lot of my time simply fighting the urge to throw fits of rage and jealousy when I see my friends with their families. I’m getting better at dealing with my anger and sadness, but I think I will always have a small feeling of being cheated. I just knew that Brian and I would have the perfect little family with kids who were smart, musical, and athletic. (Yes, I’m a planner!) But God has taught me that he is in charge and that blessings can come through the most difficult of circumstances. We were blessed to have eighteen precious days with Shawn, while some parents never even have that long. And Clayton has taught me that there’s no need to worry about the small details in life. And as hard as it can be to deal with Clayton’s disabilities, he’s simply perfect in my eyes—I wouldn’t have him any other way. We will never know why God chose our family for this particular journey—we can only accept the challenge with an open heart and willing spirit.

For they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint. Isaiah 40:31

Wow. So much has changed since then! My grief for Shawn is not near as raw, although sometimes the smallest event can open the wound up in a brand new way . . . and Clayton's long term goals are so different from just four years ago. And while we have always been proactive, Brian and I are so much more educated on cerebral palsy and what it entails. As parents of a special needs child, you definitely go by the adage LIVE AND LEARN! (And LEARN FAST, I might add!) I suppose if there's ever a time you get "used to" the emotional ups and downs of surviving the death of a child and dealing with the medical conditions of another, we're there. Not to say that we've "arrived," but to at least say we are accepting it as well as possible these days. Definitely a one day at a time affair!

Love Remembers

(This is a photo of me by Shawn's bed during his first week of life--he's so tiny you can barely see him!) I usually feel guilty after a post like this. Anytime I bring up Shawn's death and how I still hurt and grieve after so much time, I wonder who's out there saying "GET OVER IT." "MOVE ON." "COUNT YOUR BLESSINGS!" But then I got a card this month from the Central Arkansas Chapter of the Bereaved Parents of the USA and it had this poem in it:

Memories

When you need to . . .

Reach deep inside and take one of your precious memories.

Wipe away the cobwebs, lay it out in front of you.

And let the sunshine and the sounds engulf you.

Revel in then experience of it.

Relive each precious moment, be overwhelmed by them,

And taste the wonderful sweet tears that are their gift.

When your needs have been almost satisfied

Pause for one more second.

Then gently fold it back up, give it a big hug and a tender kiss,

And return it to where you found it.

Then to make the experience complete,

Find someone special and share the feelings with them.

For surely something as wonderful as this is meant to be shared!

Don't be afraid of using them--that's what memories are for.

You will never lose them.

For as certain as the sun will rise tomorrow,

Love once attained is never lost.

~Steve Channing

And after reading that I realized I need not feel guilty for reliving the memories--he did live after all, and I should go on celebrating the gift of his life no matter the time that has passed. And pouring my energy into a scrapbook page is definitely my way of not only coping, but honoring Shawn's life in my own special way. So from these thoughts "Love Remembers" was born:

Dearest Shawn,
I’m writing this just minutes after the anniversary of your death. Somedays it seems just like yesterday, amazing how my mind can keep some memories so fresh. Every August is a month of anniversaries and memories for me, and I can’t help but relive them in your honor each year. I’m determined to keep your memory alive no matter how short your little life was. Some details that are fuzzy, but I do the best I can with what my mind remembers.

You were determined to be born that morning—it didn’t matter to you that it was too early! So at 1:42 am on August 10, 2003, you came into our world. You were whisked off to another room so fast that we had to be told you actually cried out loud before you were intubated. Man, what I would give to hear that cry now! I barely remember getting to see you while I recovered from surgery. I know I got to touch you, but it upsets me that I can’t remember that first touch. I do remember how excited your Pop was when Daddy told him your names. With pride he said, “that sounds a lot like John Phillip.” I was so glad he liked it. The next few days were a blur, but in general I remember you doing much better than your brother. It was during these first few hours that I realized how different you can love your children, but still love them the same. You were the oldest and I saw you as the strong, silent type. Just biding your time and spending each day getting better and stronger. Of course Clayton being the youngest, he kept us on our toes constantly—craving attention from day one! All the while, you calmly fought your battles—never having any major troubles. I do remember that the doctors talked about 72 hours being a magical number—your first milestone reached if you could make it that long. So EARLY Wednesday morning, Daddy and I left my hospital room to go be with you to celebrate in the NICU. We began to bond with you both that quiet night. That whole first week was spent watching your ventilator settings and keeping up with Clayton’s issues. And that first weekend was spent juggling the task of visiting you both at different hospitals since Clayton had been moved. We were so relieved when you moved to ACH on the 18th. You even got a bed right next to Clayton’s! Again, the second week proved to be a battleground for Clayton, while you made improvements each day. I was overjoyed when you started “drinking” my breast milk 1 cc at a time—I was finally a part of your care!!! And it was so neat to watch your little mouth do the sucking motion on the ventilator tube—you were definitely ready to eat!! Another big memory of that week is how you literally tried to crawl out of the bed a couple of times. One doctor told us he had never seen another 24-weeker just days old and still so agile. We were beaming because we just knew you were advanced!!! We were starting to settle into a routine, learning the ropes of life in the NICU. We visited you and Clayton on the night of the 25th and it ended up being a very special time. It was just us, our little family (and all the NICU babies and staff). It was quiet that night in the nursery and we were able to bond as best we could with you both. We loved your strawberry blonde hair and how you responded to our touch. But YOU made our night when you opened your right eye to peek at us! We were ECSTATIC! It’s like we could finally see into your little world! I thank the Lord for that night. It was as if you were sending us a sign of some sort, a sign that you were going to be okay. We had no clue that it would come in the form of us having to say goodbye though. And even though you aren’t here today, you are still with us in spirit—a vital part of our beings. I love you so much, Shawn! And as long as I’m living, I will always remember . . . Love, Momma 8/28/08

And now, for this day at least, my "experience" is complete . . .