Changing Everything

"Once in a lifetime, we meet someone who changes EVERYTHING."

Dear Luke,

The other day I was contemplating who in my life I would say has changed "everything".

Hm, there's my mom, of course. Without her I would not even exist. Then there's my dad who worked hand-in-hand (literally) with my mom to teach me the value of hard work, the joy in serving others, and above all, to love God.

Then there's my amazing husband. I wouldn't say that I changed after we got married. I was still the same person essentially - just better. I know I'm running the risk of sounding cliche, but he completed me.

There's also each of my children. When Halle was born, a whole new side of me was discovered - that motherly instinct and that ability to love unconditionally. When Sam was born a more spiritual side of me was opened up. My belief in miracles (ones that could happen to me and not just in the scriptures or to others around me) was solidified.

As much as all of these people and experiences have shaped and molded who I am, you are the one who has changed EVERYTHING, Luke. I am often baffled how such a tiny little boy - weighing just under 2 pounds - who never even took a breath of life, could make such a profound impact on the way I see everything.

My perspective on life is different. I cherish each moment with my family more. I try to live fully in each moment, not wanting to forget one sound, smell, or feeling.

I embrace my emotions more and apologize less for letting others see me cry. There is nothing more powerful in this life than sharing our emotions - including our heartaches and sorrows - with others. Nothing forms stronger relationships than sharing, not only the good, but also the bad with others. And it is our relationships that make life so meaningful.

I am able to prioritize what really matters in life now. When I write out my to-do list each morning I ask Halle what it is she wants to do that day and add that to the top of my list. I have made a habit of reading my scriptures each day rather than just doing it when I remember and if I have time. My prayers to Heavenly Father are more earnest and sincere rather than quickly muttered pleas before the kids come bounding in my room to interrupt me.

Oh, I could go on and on all day over all the things that have changed because of you. Your influence reaches into the very smallest of places, the most minute details of my life. I am often surprised when I look in the mirror and see that the face looking back at me is the same one from six months ago. How can that be when everything about the inside of me has changed?

Let it be known that I think the changes (except for some all-too-normal-for-this-situation anxiety issues) are for the better.

And now, a few quotes from my favorite children's book:

On the Night You Were Born

by Nancy Tillman

"On the night you were born...
the night wind whispered,
'Life will never be the same.'

Because there had never been anyone like you...
ever in the world.

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will,
not ever again..."

I love you, Luke. Thank you for your profound impact on me. I am eternally different - better - because of you! Truly, "life will never be the same" and I thank God for that. I thank God for you.

Love,
Mom

Just Another Milestone

Milestones can be really hard. Even with my two living children...

I remember how I felt as Sam approached his first birthday. I began to relive his entire pregnancy. How one morning I woke up and went about my normal day only to realize that I was bleeding. Not just a little spotting, but tons of bright red blood streaming down my leg. Luckily it was the weekend and Boyd was home. He rushed me to the hospital as I began to go into shock.

I had a complete placental previa. I was put on partial bedrest, and after another bleeding episode, on full bedrest. As difficult as those (almost) three months were, I would have given anything for a few more weeks. I wasn't prepared to have a 30-weeker with severe health problems.

This was our second NICU experience. The first time around was unexpected and therefore traumatic. This time we saw it coming and learned to embrace the experience. I fell in love with Sam's nurses, doctors, and therapists. We became genuine friends. Even after Sam came home, I found myself wondering how they were doing (and wishing they were still around for the midnight feedings).

As Sam's first birthday approached, I found myself wanting to be back at the place where it all began. I made a phone call and joined the Parent Volunteers at our NICU. This group of women brought Sam and all the other NICU babies presents once a week. They had all had a baby (or, like me, two) who had spent time in the NICU. They knew how we felt and were there to talk us through everything. I felt that perhaps becoming a volunteer as well would help me come to terms with all we'd been through.

The first time I entered the fifth floor, smelled that sterile smell, and heard those beeping monitors I nearly had a panic attack. How could it be that I loved and hated this place all at the same time? How could it hold such tender, sacred memories, and yet be the place that haunted my memories? After gathering gifts together we went "out on the floor" to take them to the babies' bedsides. The first bed you can see after entering the NICU door was Halle's. The one next to it, Sam's. Upon seeing them I did have a complete breakdown and began to bawl. It would take several weeks of volunteering before I could finally go out on the floor.


Now skip ahead another year. Sam is approaching 2-years-old. This time I am handling the milestone much better. I love volunteering at the NICU and am even a part of an enormous fundraiser held each year for the NICU and pediatrics. After a silent auction and dinner, a presentation about the NICU is put on. The room goes dark and suddenly a movie screen lights up with pictures of impossibly tiny babies. They are so sick, and just when all hope seems lost, the baby miraculously recovers. He goes home, perhaps with oxygen and monitors and maybe even with some lasting effects, but he is home with his family all the same. I watch this movie and I begin to sob. A fellow volunteer, and friend, puts her arms around me.

"I want another baby so badly," I tell her. "I know our chances of ending up in the NICU again are high, but I would do the whole NICU experience again if it meant we could have another beautiful baby in our home." She nodded knowingly.

A month later I found out I was pregnant.


Skip ahead one more year. Sam is going to be three this month. The big NICU fundraiser is once more upon us (tomorrow, in fact). I haven't been to the NICU since a week before Luke's death. I can't go anymore. I can't stand the smell of that hospital. I can't stand to go to the fifth floor where the NICU and labor and delivery are situated. My last experience at L & D was a true nightmare. And the NICU is a place I yearn to be - watching my little boy breathing peacefully, even if while on a ventilator. I'm afraid I would covet all those adorable babies. (Let it be known that, while others may look at preemies as scrawny and baby bird-like, I have never known anything other than a preemie. Not only have I never experienced a full-term pregnancy, but I've been around the NICU so much that I am always shocked when I see a full-term baby. 7 pound babies look ridiculously large to me - the NICU has seriously warped me in so many ways.) I think I would be jealous of all the parents with babies in the NICU. I know no one wants their baby there, but at least it means they have a baby.

I've been invited to volunteer at the fundraiser. Lori, the head of the parent volunteers, is very understanding. She knows I can't even drive past the hospital without bawling, but she also knows I miss the support of the friends I have made there. And so she cautiously invited me to come. I gave her an emphatic "yes", but now I am scared.

Scared of the emotions I will feel when that video presentation comes on and the memories that it holds of one year earlier.

Scared of seeing Heather, the bereavement specialist. She is getting an award this year, which she so deserves because of all the support she has given others. I just wish I wasn't one of those people she has supported.

Scared of seeing Halle and Sam's nurses there and feeling an ache in my heart, wishing they had gotten to meet Luke as well.

Sometimes I wonder if I am masochistic. A gluten for punishment. But most of all, I wish that I didn't even have the chance to go to the fundraiser this year. I should be tied down to home and a nursing baby boy with shocking blue eyes and the cutest button nose.

Just another milestone I have to live through.

The Greatest This Life Has to Offer

Dear Luke,

There are many things people say to try to comfort those who are grieving. We just can't stand to see others hurting, and so we try to say something, anything, that might help. One that I've heard a lot is that you "are in a better place." I've even heard people say that you are "lucky to miss out on all the terrible things in this world."

Hm, a better place? Lucky? I know heaven must be wonderful, but I'd also like to think that our family is too. Don't get me wrong, this life can be very difficult and cruel, no one understands that more than me right now. But there are also some incredible moments that everyone should get to live.

After you were born, we kept you in our room for almost an entire day. Dad rocked you and whispered tales of football heroes and of the wildlife he loves so much. I held you up to the window so you could see the majestic mountains overhead. The mountainsides were beginning to glow orange and red as the leaves on the trees changed colors. And I began to bawl. You will never get to see those beautiful mountains we love so much. You will never get to hike the trails with us, picking up leaves and rocks as you go. You will never get to sit in Romney Stadium and watch the Aggies play football. You will never get to throw a baseball in the backyard with Dad and Sam.

How can people say you are in a better place when you have a family that would love you to pieces and show you all the good this world has to offer?

My parents offered me the happiest childhood a girl could know. I want that for my children as well. And I find myself lately trying to shove three happy childhoods into only two children. I feel like I have to give it to you, whether you are here physically or not, because I feel you deserve it too. I feel as though we need to live this life to the fullest, in case you are allowed to live vicariously through us.

So, in an attempt to create some of the happiest memories a child could want, we went to Disneyland last week. We entered those gates and I felt as though all cares and troubles melted away. Nothing mattered but our family - you and Halle and Sam. And for those three days life revolved around us.

It was a wonderful vacation. The kids enjoyed every moment of it. And Dad and I felt like kids again, enjoying even the simplest of things. We even went to the beach so the kids could see the ocean for the very first time. Halle was mesmerized by the waves and Sam couldn't keep his artistic fingers out of the sand and drawing murals.

But there was one moment, on the last day, that I felt my emotions well up inside. Maybe it was the knowledge that this fantasy world was all going to be gone in the morning. And maybe it was the reminder that I will never get to take you to Disneyland in the flesh. But whatever the reason, somewhere between seeing the Toy Story army men playing their drums and posing for pictures with Lightning McQueen and Mater, I began to sob. Yup, right there in the middle of "the happiest place on earth" I broke down and cried.

I miss you buddy. I wish you could see the tulips poking out of the dirt in our front flower bed. I wish I could take you to see the baby lambs down the rode. I wish you could feel the spring air outside and smell the newness all around. I wish you could hear your brother and sister talk of you and pray for you.

But perhaps you do see and hear and feel all these things. I feel you so near sometimes. I think that if I could just look hard enough, I would see you right here beside me.

I'll never stop living for you, Luke. I'm going to experience all the wonderful things this life has to offer in case you are here with me. I want you to know that, wherever you are, there is a family here who loves you beyond all comprehension and will never forget you. And that is the greatest thing I can offer you in this life and the next to come.

Love you,

Mom

Welcome to the "Club"

Dear reader,

I began this blog more as a journal for myself. A way to express myself and put into words all of my raw emotions. It was very cathartic. I know I could have just written in a journal, but it helped to publicly talk about Luke. It made his existence seem more real. Just to think that someone else knew that he was once alive and that he made a difference to us was very healing.

But now that doesn't seem enough. I need to do more than just tell of Luke, I need to know that others feel what I feel. I need to know I am not alone in my heartache.

6 weeks after Luke passed away, I went to a local support group for parents of pregnancy and infant loss. I was suffering from severe anxiety attacks at the time. Being in public was excruciating for me. I was a weepy mess and I was afraid of showing others my emotions. And most of all, I was afraid of leaving my husband and two remaining children. I lived in fear that something terrible would happen to them. I hoped the support group would be good for me, but it was actually very overwhelming. As we all sat in a room sharing our tragic stories, I felt all my strength leave me. I was barely able to handle my own loss and now here I was grieving over others' losses as well.

I think I was in major denial over Luke's loss. Here I was in a group of people who had all lost children. I don't belong here, I kept thinking. This can't be happening to me. This isn't how my life is supposed to be.

I wish I could just make friends with women at the park. But instead, I have made some of my greatest friends at the NICU - both with other mothers with NICU babies and with my children's nurses. I also have become friends with Sam's speech therapist. I have even made friends with women across the country through email support while they were on bedrest for high-risk pregnancies like mine.

In a sense I belonged to several "exclusive" groups - the mother's-on-bedrest club, the mother's-of-NICU-babies club, the mother's-with-a-child-in-need-of-early-intervention club, and the mother's-with-a-broken-body club. I never anticipated being in these groups, but now that I was here I might as well make the best of my situation and make friends with those who could understand me best.

But this was too much. I didn't want to be a part of the mother's-who-have-lost-a-child club. I wanted to be a part of the club that everyone in my neighborhood and church were a part of, the mother's-with-enormous-bellies-and-no-worries-in-the-world club. Okay, maybe not everyone was in this club, but about 10 women that I associated frequently with where. Most due at the same time I was. The majority also having boys. This was the club I desired to be in. But I had been kicked out without any prior notice. And no one asked if I wanted out. I had no choice. I was kicked out, never to return.

I came home from the first support group vowing to never go back. I didn't want these friends. I didn't want their lives. I didn't want to belong. But my emotions have been very raw again lately, so I finally started searching blogs in hopes of finding a friend. This was a big step for me. I've finally accepted that I am a part of this club, whether I like it or not. And since I'm here, I might as well make friends with those who can support me the most.

I still have a hard time reading other's blogs. I hurt so desperately over other's losses. But I've also found strength and great hope in their stories. It's nice to know I'm not alone. There is such power in crying with others, in sharing our emotions, and telling our stories. If you are part of this club, I'm sorry. I wish none of us were. But if you are out there and you know how I feel, I could really use your strength right now.

-Ann

Thoughts on Love and Loss

Dear Luke,

I find that most of the time I am now able to think of you and smile. I love the memory of you. I feel such hope that I will see you again some day. I feel you near and know that you have changed me for the better. Your life and memory follow me where ever I go. It's difficult to feel too sad over your loss when I feel that you aren't lost at all, but somewhere very close to me.

But there are times when even my faith, no matter how strong, seems to fail me.

Today at church I was helping in nursery (with the children under 3) mostly because Sam wouldn't let me out of his sight. I began talking to a dad in our ward and he started asking about you. He wanted to know if you had been alive or not when you were born.

This, to me, is a touchy subject. I know what their thoughts are, because I know I thought it before it happened to me. They are thinking that we are lucky to have never known you, for that makes it not so painful to lose you. They are thinking that at least we didn't bond with you. Of course they think these things, no matter how wrong these thoughts are. They aren't insensitive, they just don't understand. And how could they, they haven't had to experience it.

But the truth is, we did know you. We did bond with you in a very dramatic way. And it IS painful.

When we found out you were gone, just a day after hearing your heart beating so strongly at a routine doctor's appointment, we were terrified for your arrival. I didn't want it all to be over. Once you were born all hopes of seeing you pink and healthy would vanish. But there was a much bigger fear on my mind - what if I didn't love you? After all, you were gone. I didn't know if it was even possible to love someone whom I had never seen in the flesh and was now dead.

My fear was all in vain. Of course I loved you. I still love you. It didn't matter that you were born sleeping. The minute I laid eyes on you, I was madly in love. You were so handsome! You looked just like Halle and Sam. I giggled at the scratch on your nose, scabbed over, proof that you had been living, for you had scratched yourself while wildly moving around inside me.

It does not matter what condition the human body is in, a parent's love goes much deeper than all of that. It would not have mattered whether you were big or little, a boy or a girl, alive or dead. You are mine, something that even death cannot take from me.

In my opinion, having you be born sleeping did not make it easier to lose you. In fact, there are times when I wish it had been different. I know you had to go, but I wish I could have seen you take one little breathe, watch you move those little legs that kicked me so happily on a daily basis, or feel your warm skin on my lips. I remember that horrible feeling of your cold skin. I remember trying desperately to warm you up in the soft blue blanket that was swaddled around you. You were so cold! And then I began to bawl. You didn't feel the cold and nothing I did could warm you up. Nothing.

I wish I could have had just one small moment with you in this life. The pain of never getting that chance still hurts me deeply.

This dad I was talking to asked if I think it would be harder to lose one of my other children. Meaning one of my children that actually got to live. He was not meaning to be rude. He was aware that he had no understanding of my pain and he sincerely wanted to know my opinion. I looked him right in the eye and said very honestly "No, it wouldn't be harder to lose them."

I agree that losing my four- or two-year-old would be different than losing you. I have more memories with them. There are more reminders of them in our home. It would hurt to have so much of them constantly reminding me that they were gone. But in some ways, that is what I grieve so much about your loss. I have nothing. NOTHING. No living memories with you. Just a pregnancy, taken from me too soon, and 20 hours holding you in the hospital. We spent those hours desperately trying to fit a life-time of love into just one day.

I ache that I will have scrapbooks full of pictures and memorabilia of Halle and Sam, and yours will remain very small. A few pictures of my pregnancy, your birth, and a few moments captured on film when our family does something to honor your memory. I feel that so much was taken from me the day you died. I had your whole life planned out and I didn't get to see even one moment of it in action. No, it wouldn't be harder to lose Halle and Sam. Just different.

As I reflect on all of this, I realize that it isn't the amount of time we spend with our baby or the number of memories we hold so dear that determines how much we grieve after a loss, but rather the amount of love we felt. Because we love you with the same intensity that we do Halle and Sam, the grief is just as real. Just as poignant.

"Grief is the natural by-product of love. ...The only way to avoid the grief would be to not experience the love; and it is love that gives life its richness and meaning."
-Lance B. Wickman

I don't care what the circumstance is, I love you, Luke. I love you SO much! And nothing is ever going to change that. Here we are snuggling close. I remember closing my eyes, trying to soak every memory in - the way you smelled, the way you felt in my arms, and the way it felt to be your mommy. I feel so blessed to be your mommy - one of my greatest reasons to smile.



Love forever,
Mom

That Mean Old Public Library

Dear Luke,

I feel that most days I manage life pretty well. I like the saying that other mothers like me have adopted, it's called "living with loss" or "finding a new normal" rather than "moving on". I feel like we've learned to live with this new life. But some days...

I find that my grief sneaks up on me at the most unexpected (often inopportune) times. Today it was at the public library. And I'm not quite sure why.

I've had a terrible cold and decided to pick up a new book to read so that I could soak in the tub once Halle and Sam were in bed. I've only been twice since your death. One of those times was shortly after we lost you and was a complete disaster. The other time, I took the kids to story time, under the stupid assumption that that is what I was supposed to do. My daughter's preschool teacher, an incredibly sweet lady but with no experience or understanding of what we were dealing with, told me that I should make life as normal for my two remaining kids as I could. This comment left me feeling even more guilty than I already felt (for heaven's sake, I hadn't even been able to keep my child safe in the womb, what sort of terrible mom am I?) and decided I needed to be a "better" mom. I equated this to taking my kids to story time at the library.

We entered the library, packed full of happy mommies and noisy kids. I know I should have felt happy to at least have two living children, but I was aching for my third. Call me selfish. It hurt to see that everyone else's life moved on while mine stood still. I wanted to hide from their happiness. I wanted to scream whenever I saw a woman with a big pregnant belly - the type of belly I've never had and never will get a chance at again. My sorrow and grief was outweighed only by the bitterness that began to well up inside when I realized these people were all living the life I wanted.

Time certainly has helped heal my wounds (along with therapy, medication, and the support of other grieving mothers) but it's funny how I still can't seem to go back to the library, of all places, without my heart breaking.

I remember taking Halle and Sam to story time outside during the early summer months. I was just starting to show, but unless you really knew me, you wouldn't have known, just looking like I'd put on a few pounds. I was still in the first trimester and we hadn't told very many people about you yet. Everywhere I went I was carrying around my new little baby and that fantastic feeling of having a wonderful secret. I was carrying a miracle and it was just for me. That little secret put a constant smile on my face.

We didn't go to story time for very long. Soon the weather was too warm, and although you were just the size of a little bean back then, your existence made my body temperature sky rocket. I'd never been pregnant in the summer before, and the heat was unbearable. So we stuck to doing the indoor crafts at the library while I cooled myself by the air conditioner. Halle and Sam adored this time and I would sit and daydream about how I would make this work the following summer with THREE kids. The thought was exhilarating. And also unnecessary as it turns out.

So silly that a library would bring me all these thoughts - thoughts that one moment bring a smile to my face with such sweet memories of my pregnancy and in the very next instant a torrential downpour of sorrow and deep loss.

I find it funny how these painful thoughts don't hound me as much at home as they used to. Perhaps that's because you are everywhere in our house. Your pictures, your memory box, your clothes, your room, the blankets laid out just waiting for your arrival. There isn't a place you can enter in this house and not be reminded that you exist. But outside of our home it's as though you never happened. Story time will continue at the library with or without you. Your memories there belong only to me. And that leaves me feeling sad and achy.

Just another place I'm not ready to be yet - the public library. I will add it to the long list of other places that hold memories of you, but only for me. Other places that I am not ready to return to. At least not yet.

Love you like crazy,
Mom

Doing Hard Things

Fall 2010 was a difficult one for Halle. She was experiencing some big "firsts" and required to do a lot of growing up.

The very end of August Halle had her first surgery. She needed a tonsil/adenoidectomy. The surgery was supposed to be easy and she'd be back in the recovery room with us after just an hour or so. Over an hour and a half later her doctor returned, but no Halle in sight. He explained that she had stopped breathing after they removed the breathing tube and they were keeping her for close observation. "She only turned blue for a very short time, but the medication we gave her got her breathing and 'pinked' her right up." Boyd and I giggled nervously, "Yup, that's our drama queen" we said. But inside we were screaming. "She turned BLUE?!" "She wasn't breathing?!" This was a routine tonsillectomy. How did this happen?

Her recovering went well at first, but a week into it she was in such intense pain and I couldn't keep pain meds down her. She just kept throwing it up.

During this time, when she was feeling well enough, she began her first day of preschool. She was so excited about her teacher, her class, and her new friends. But despite her love for school, it was a whole new ballgame for her, and she began to struggle with leaving me.

Not two weeks after her tonsillectomy and just a week after starting school, Halle would wake up one morning to one of her aunts in our house. Her mom and dad were at the hospital and when they returned the next day, mom no longer had "a baby in her tummy" and was crying constantly. It was clear that life would never be the same.

Halle sensed all these big changes. My confident, independent little girl suddenly became very clingy and insecure. She wouldn't even go into the bathroom without me, begging me to sit on the floor beside her. If I left her sight for even a second she would begin bawling "I'll have a hard time without you Mommy!" I soon took to sleeping on the floor in Halle and Sammy's room, partially so that Halle wouldn't be scared and partially because I was terrified something would happen to them while I wasn't watching.

It was, to say the least, a VERY hard time in our lives.

In response to what we were going through we decided to adopt a family motto for the year. We were hoping to switch Halle's attitude (which mirrored our own) from "I'm having a hard time", which we heard Halle say at least a dozen times every day, to "I can do hard things."

To help us remember our little family motto, I made a charm with this saying on it for each of us to carry around every day. Halle and I carry ours on bracelets. Sam and Boyd have key chains with our saying. Boyd attaches his to the rest of his keys. Sam's is hooked onto the zipper of his coat. And Luke, who is NEVER excluded from any family affair, has a charm that, at the moment, hangs from a Valentine's decoration on his grave.Along with our "I can do hard things" charm, each person has an angel wing charm. This is to remind us that we have heavenly help with the hard things we are asked to do.

Each Monday we revolve our Family Home Evenings around doing hard things. One week Boyd told the Bible story of David and Goliath. He draped a towel over his head and one over Sam's. He equipped himself with a toy sword and gave Sam a sock to be a "sling shot". Halle and I were dressed in more towels - our soldiers uniforms - and watched as little David took on the giant Goliath. It was so cute watching little bitty Sam (my 20 pound 2 1/2 year old) walk boldly up to his enormous dad with only a sock to help him. He threw the sock at Boyd who promptly fell to the ground. Halle and I let out loud cheers. Then we abandoned our costumes and talked about how David, even though he was very little, was able to take on a giant because of God's help. Then we explained that Heavenly Father helps us just like he helped David.

Sometimes we are lined up against giant problems, ones that far exceed our small size. The task of enduring sometimes seems overwhelming and downright impossible. But with God all things are possible. And with His help, we can all do hard things.