When Christmas Doesn't Feel Like Christmas

Some of you may be groaning at the title of this post because it is only November 3. We are barely past Halloween and you may be worrying that I'm bypassing Thanksgiving all together. I promise you this is very much NOT the case! This Thanksgiving will take on a more special meaning for us than ever before because we will finally be welcoming Hailey's baby sister to this world, and we have so very much to be thankful for.

BECAUSE of the fact that I will be having a baby at Thanksgiving, and I know those first few weeks with our toddler son and a newborn will be a blur, I'm trying to get all of my Christmas shopping done now, wrapped, and shipped off to where it needs to go. Maybe this is also part of that nesting/homemaking thing that can afflict women at the end of their pregnancies - who knows. But I'm embracing it.

BECAUSE, too, last year Christmas didn't feel like Christmas at all.

I spent the second half of October in the NICU with Hailey. And then all of November. By early December, our sweet little fighter had actually mounted her biggest recovery to date, and my husband and I were cautiously optimistic that we might actually be able to take her home by Christmas. As I spent all my days with Hailey, shopping on Amazon was a life saver for me in terms of tackling gift giving for our families.

For what felt like the longest time, I held off on buying Hailey any Christmas presents because I wasn't sure if she would live to see the holiday, and it broke my heart to think of the presents sitting idly by if she was never to play with them. But as she continued to improve, I cautiously purchased a handful of gifts for her.

On the morning of Saturday, December 17, I woke up at home beside my husband. Hailey had been stable and doing well enough that I'd taken to spending the evenings and overnights with my husband and son to provide our family with some balance. We'd been invited to a neighbor's house for breakfast, but I was lagging behind to finish pumping breast milk for Hailey when the hospital called.

The nurse practitioner on the phone sounded somewhat calm as she told me my daughter's lung had collapsed, but I could sense the frenzy going on in the background. It took me a moment for my brain to process. I obviously knew that wasn't good news, but I wasn't quite sure of the implications. I asked if my daughter was, in that moment, dying. Quite honestly, they didn't know. I was told a lot would depend on how the next number of hours went. In shock, I called my husband home and we rushed to the hospital to find our daughter who had just been doing so well suddenly hooked up to more wires and tubes than we'd ever seen before (and we'd already been through a lot!).

Hailey held on for the next few days, but she wasn't doing well. And then on December 23, we found out this last setback was one our beautiful, strong daughter wasn't likely to surmount. Her heart had given out faster than anyone had ever seen in a child so young.

I remember dazedly walking through the halls of the Children's Hospital, all decked out for the winter holidays. I remember feeling sad, mad and utterly distraught that I'd been foolish enough to give in to hope and that I had just bought Hailey Christmas presents. I remember thinking, how on God's green earth does anyone find out two days before Christmas that their child is going to die?

I remember thinking of my son. I remember my husband and I discussing how best to love each of our children through the tough days and weeks ahead. I didn't want to leave Hailey, but we took some time away from the hospital to try to think more clearly, and to take our son out to enjoy at least a little bit of the Christmas season. Mainly, that meant we took him to a nearby mall to see Santa, and to ride a two-story carousel as many times as he wanted. He was two, so he was easily entertained and made happy by all the Christmas lights and the crowds of happy people.

You know that saying about being kind to people because you never know what they are going through? That day, I felt like we were THOSE people. I marveled that to anyone who saw us then, we were simply a young family of three. A Mommy and Daddy taking their son out on our holiday break. How could any of them guess we'd just been told our daughter was dying? We rode the carousel with our son. We tried to smile, for him. We were numb.

We spent Christmas together, as a family of four, in the NICU.

Grief in and of itself can be so isolating, but when yours hits on a holiday or some other occasion when the rest of the world is out celebrating, it can feel so much worse. So much more lonely.

But in the end, I actually took comfort in the fact that we were losing Hailey at Christmas because I've always felt it is a time when God in Heaven is closer to us here on earth, as we all stop to love each other a little better in celebration of Jesus' birth.

We waited until December 30 to remove Hailey from life support. She didn't have much time left with us regardless, but I chose the day. I wanted to ease our daughter's suffering --- to finally give her some small measure of peace. To acknowledge how hard she'd fought to remain with us for as long as she had. And to let her go to be with Our Father when I felt him nearest to us. It somehow felt wrong to make her carry her burdens into the new year.

Hailey's going home was one of the most painful and most special moments in my life. As I've written about before in this blog, Hailey blessed us with every last wish we had for her. We removed her tubes and she got to sit with her big brother one last time. He got to hold her, hug her and kiss her cheek. And then my husband and I got to hold onto her as she passed quickly from this world with a gentle sigh. She didn't struggle. She didn't seem scared. She seemed relieved.

I have wondered for these past many months since losing Hailey how I would feel this Christmas. If the holiday would forever be tainted for me as a time of great sadness and loss. I think a wonderful part of this journey in healing is that we have been blessed with another child who will be in our arms when the holiday comes around once again. This new child will never replace Hailey, nor is she meant to. Rather, I see her as a gift FROM Hailey...a third child I'd otherwise never expected to carry.

So yes, it is November 3 and I am embracing Christmas. I am shopping and I am wrapping gifts while I listen to Christmas carols. And with every breath, I am thinking of our dear, sweet Hailey Grace and praying for this new life that is about to emerge. And that I won't be too much of a disaster the final week of this year. But if I am, that is okay, too. Few things are as immense as a parent's love for their child. Death cannot change that.

With love and a grateful heart.

“Hope” is the thing with feathers 

BY EMILY DICKINSON

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

Despite the fact that I opened this blog post with a poem, I've never been one for poetry. I even switched my college degree away from English when I realized how many 400-level poetry classes I would have to take to graduate. I much prefer when people are more plainly spoken, and often times when we would dissect the meaning of a poem in class, I thought people were clearly just making stuff up. Everything seemed so open to interpretation or hidden meetings and it was too abstract for me. 

That being said, I still find the odd poem that speaks to me. Usually they are the more popular ones because as mentioned above my appetite for poetry is not that deep, and "Hope" Is The Thing With Feathers by Emily Dickinson falls into this category. I've always liked her message that hope springs eternal in our chests, but I like this poem even more now for its embodiment of hope as a bird. 

As with poetry, I never used to be overly fond of birds, but now I have an attachment to them in regard to Hailey. The first time I ever heard the hymn "His Eye Is On the Sparrow," I fell in love with it. I think I was 13. And all these years later, when my daughter got sick, it was one of the songs I'd often play for her, or sing to her myself, in the hope of bringing her comfort. I told her she was one of God's little sparrows. 

On Christmas Eve of last year, as my husband and I had just received news of how dire Hailey's case was and sat alone in the doo-wop, diner-styled hospital cafeteria trying to decide on a plan of care for her, we both heard "His Eye Is On The Sparrow" playing from some still-unknown source. My husband and I had teared up --- we'd each felt it was a sign that God was with us in that awful moment. 

But today is October 18, 2017.  Exactly one year ago today, I was first rushing my then six-week old daughter into the hospital because she'd thrown up a funny color. I remember the feeling of unease I had, driving through the dark myself while my husband remained at home with our son. I was worried...the night felt particularly ominous and I remember telling myself not to overreact. I tried to remain calm.

As our days in the hospital turned into weeks and then months, and the symptoms piled up, I fought to maintain hope for my daughter. There were days when doing so felt utterly daunting. I had to search hard for any little positive bit of news to sustain me. 

*

After Hailey passed away, there was one thing people would say to me that scared the hell out of me. "A piece of your heart will always be missing," they would acknowledge. I understood the positive intention behind the words and didn't blame the people who offered them for the terror they caused me. Because I wanted to believe that my husband, son and I could be okay without Hailey here with us on Earth. I wanted to believe that we could move forward. That we still stood some hope of being a happy family --- just one with a very special angel looking over us from Heaven. But I didn't know. I couldn't be sure. Thinking that a piece of my heart would always be missing made me feel like I would never be whole again. It made me feel panicky. 

I am here to say those folks were not wrong. A piece of my heart will always be with Hailey. I won't ever be the same as before I lost her. She has been gone for almost 10 months and while I can go two or three weeks in a row and be fine, then I will wake up for a day or two in a row and just feel so weepy and heartbroken for my sweet girl, and for us. 

But I don't see myself as permanently broken, as I once feared I would be. Because I fought, alongside my husband, to maintain hope for our future as a family. I sit here, 34-weeks pregnant with Hailey's little sister in my belly. Something I couldn't fathom a year ago. I'd planned to be finished having children after Hailey was born --- so this baby is a miracle that wouldn't exist if not for her big sister. And I wonder how I will feel when I finally hold this baby in my arms --- and how much of a mess I might be all over again for having lost Hailey. But I will embrace that moment when it comes and find my way through as I have with everything else. With faith and the loving support of so many family and friends. 

It is a brave thing to hope. Audacious even, as President Obama once said. 

We cannot know what tomorrow brings. We can fear the negative possibilities and threats of failure that tend to run rampant in a mother's worrying heart, or we can acknowledge the equal opportunity for beauty in all its forms...the best ones being those we often never even could have imagined for ourselves. I choose hope. For myself, and for all those whom I love and know are facing their own struggles. 

With love and a grateful heart. 

 

Horoscopes, Hindsight and HIM

The past few years, it has been hard to get to church. It's true that I never enjoyed going much until my late twenties, when I stumbled onto some joyful and invigorating church communities and my now husband introduced me to the enriching environment a small group/Bible study can provide.

But, moving around with the military can make it hard because every few years we have to start the church search all over again. And having kids can make getting to church hard, too. When my son was very young, his feeding and nap schedule never seemed to work out with the distance we had to drive to attend a church we liked. Then as he got older, his rambunctious spirit sent shivers down my spine at the thought of getting him to sit through a service. And I had to drop out of not one, not two but three different Bible studies because my normally happy son wouldn't tolerate the free care provided by the Bible-study organizers.

Then Hailey was born. And I spent all my time in the hospital, and many tearful moments in the hospital chapel. It was a beautiful place filled with desperation, hope, love, empathy...I miss it and often wish I could go back. It was a room filled with golden light and it made me feel like I was sitting inside a star. It is where I spent Christmas last year...I think it is the only year in my entire life that I didn't formally attend church in celebration of Christ's birth. I just sat there myself in the hospital chapel and prayed. And on December 30, it is where we baptized Hailey and let her go home to be with God.

I've gone to church since then. Only formally for Hailey's funeral mass. But other times, just to sit in a church and pray. To feel closer to God, whom I've never stopped talking to, and now my daughter in Heaven. But I kind of knew that wasn't enough.

So a few days ago, when a friend here in Georgia asked me to go check out a new church with her that she was curious about, I agreed to go if the church could provide childcare for our kids (especially since both of our husbands are away and not around to help right now). I felt like maybe my friend's invitation was a sign, and maybe it was time.

Believing people look for signs --- whether you believe in horoscopes and look for them to be true, or you believe in God and look for Him to be true. Skeptical people struggle with the idea of signs and balance them against logic. Did your horoscope really come to fruition, or did you look for ways to make it so? Am I truly receiving signs from my daughter that she is still with me, or from God that He wants me back at church, or am I being fanciful because my heart longs for it to be so? Or is it all hindsight, it being 20/20 after all?

I don't know. But I couldn't have predicted how my visit to this new church would go. The pastor started the sermon talking about recent events in Las Vegas, which I figured was par for the course. What I didn't anticipate was that the rest of his talk would veer into the pain of losing a child. Or the compassion Jesus feels for us in such a moment. Oh and that friend that I was checking out the church with? The thing that first brought us together was that she has lost a child, too. So we both sat there, next to each other, in that church for the first time, and we both felt so stunned. And so moved.

The pastor spoke about believing in God and in Heaven and how our children will greet us again someday. He relayed a story he once read, written by a woman who imagined twins in the womb. They enjoyed their lives in utero, but as they aged, the quarters became more cramped and they began to sense a change was coming. One twin embraced it and was excited for birth, but the other felt nervous. He wondered, "how do we know life exists after birth? How do we know our mother really exists? We've never met her. No one has ever come back to tell us there is more after this life in here."

But of course, we all now know life does exist after birth and it is wonderful. And I look forward to discovering the beauty of life after death because I hope I will see Heaven one day, and my daughter's spirit made whole. On Sunday, I felt God pulling me close to Him and I'm thankful He'd still make such an effort for me. I look forward to spending more time in His House so that I may know Him better now, while I'm still here on Earth.

With love, and a grateful heart.

Make Your World Small

When your child endures a lengthy stay in the hospital, their treatment bay or room (if you are lucky enough to be granted one) becomes your world. You learn all of the doctors' names and know who is on rotation. You make friends with the nurses and always hope you are staffed with a familiar face. You figure out when the hospital cafe stops serving coffee and which day of the week your favorite meal is served in the cafeteria. It can be hard, at times, in the midst of deciphering medical jargon and evolving diagnoses, to remember a broader world exists outside the hospital walls.

I grew so accustomed to our hospital routine that even now, months after sweet Hailey has passed away, I miss the comfort of the routine we found for ourselves. I miss holding my daughter. I miss the social conversations I had with the nurses. When Hailey was well enough for me to sleep back at my house with my husband and son, I miss the routine of calling the hospital on those nights around 9 p.m., when I knew the evening nurse had just weighed my daughter. Every new ounce gained was a victory of enormous proportions, and we always celebrated together. I knew everyone was rooting for my daughter, and for us.

Fast forward to this past week. On social media and in the news, I viewed many opinions about the controversy surrounding NFL players taking a knee during the playing of the national anthem, the debate reignited by some fiery remarks made by President Trump. I am touched by the patriotism so many feel for this country, and wish more of these folks felt moved to serve in our all-volunteer force. I feel proud of the men and women who do serve in our military to protect the many freedoms we hold dear. I feel disheartened by the racial divide that still exists in our country today, which I see born out not only in national protests and news headlines but also in the broken hearts of neighbors and friends who have to worry for the safety of their children simply because of the color of their skin.

Having recently had to evacuate our own home for Hurricane Irma, and having had to endure only 24-hours of life without electricity with a rambunctious but healthy toddler, my heart is shattered for the people of Puerto Rico. They are citizens of this country (although their need is the same even if they were not!), and yet they have had to endure unspeakable hardships while awaiting our aid. Their needs are immediate. They are without food, water, power and running low on gas. Hospitals - including children's hospitals - are running out of the diesel they need to keep sick children alive. I pray that everyone who has found time to debate taking a knee also finds it in their heart to give to the people of Puerto Rico and those others recently impacted by natural disasters.

For my friends who have felt disheartened by recent events, I would like to say a few things. First, as my husband pointed out, just because we disagree doesn't mean I dislike you. I think many of us have lost the ability to listen to opposing view points with an open heart. Truly, I'm not above that struggle. But listening with an open heart is the only way we can learn from each other. Just because a truth is not YOUR truth, doesn't mean it isn't true for someone else. We all walk different paths and should not discount each other. When talking with someone else with whom you disagree, try asking more questions rather than making heated statements.

Second, and most importantly, people can still be good if you give them the opportunity NOT to disappoint you. I admit to feeling disheartened like many others with what is going on these days, but all I have to do is simply think back to my journey with Hailey and all of the many kindnesses people showed us. I think back to how desperate my heart felt in those days, and how small my hospital world with Hailey was.

And so in closing, I offer you this advice: make your world small. Tune out all the noise and the people who don't matter. Surround yourself with people who lift you up until you feel brave enough to take a chance on strangers again. Focus on what you CAN do to be the change you want to see: practice listening with an open heart, give to people in need, and let your voice be heard through action...volunteer, vote, LOVE.

In my house, we hung a shelf made by my husband on the wall across from where I run on the treadmill. On it sits a portrait from our wedding day, when we looked out on the world with love in our eyes and hope in our hearts. Next to it is a picture of Hailey taken in the hospital, sleeping in my arms --- chosen specifically to remind me how hard our daughter fought and yet that she still found moments of peace amidst it all. Beside her, there is a tiny glass jar with a bird perched above it, to remind me the Lord keeps his eye on the sparrow. And an angel and lantern as well, to always help guide us. All of this, and the sound of our son's laughter echoing through the hallways of our home, keep my heart lifted in times such as these. Hailey taught me we can all find peace amidst the struggle, and use it to stay centered. With love and a grateful heart.
.

On Her First Birthday, A Legacy of Love

At this time last year, I was in the hospital, preparing to give birth to Hailey. She was born on September 5, 2016, and it was an easy if cheesy joke to quip that I labored on Labor Day. Unlike her big brother, she cried the moment they pulled her out of me and I remember sighing in relief to my husband and exalting, "Oh thank God, she is healthy!!!"

Little did we know how wrong I would soon be proven. Above is a photograph of a few of the items by which I remember Hailey today. The outfit her big brother picked out for her and that she wore home from the hospital. The little lovey bear she clung to once she was readmitted to the hospital a month later, never to leave again. A lock of her hair, which now separated from her head looks like a dull brown rather than the strawberry blonde luster we originally knew it by. And a tiny locket the hospital made for us, with a shrunken image of Hailey's little hand print.

It would be easy to sit here tonight, on the eve of my daughter's first birthday, and write about all that we have lost. I certainly feel it in my heart as my grief threatens to pull me under. But I think a better way to pay homage to the joyous occasion of my daughter's birth is to think about all that I have gained through her.

Thanks to Hailey Grace, I have made new friends. From the staff at the children's hospital who cared for us, to fellow NICU parents, members of our Army community, and folks we've met since moving to Georgia, who were brave enough to befriend me despite the fact that I'm going through one of life's worst moments....I am so thankful for all of you.

I have had my faith in humanity bolstered by the many acts of kindness folks have shown us. From the woman who cut my son's hair for free when she heard it was for his sister's funeral, to the old high school acquaintance who gifted me the most stunning bouquet for Hailey's grave...people really do care.

I'm thankful I have gained a deeper relationship with existing friends through their many gestures of support, from cross-country trips to attend Hailey's services, their words of love, their continued outreach to make sure I am okay and their patience when I sometimes take too long to respond.

And, my relationship with running has evolved from a necessary evil to my cherished, prayerful time with the daughter I will always miss, but will always carry in my heart.

Thanks to our journey with Hailey, I now possess and even deeper appreciation for my husband and son. My husband, for his steadfast and positive outlook on life and for the mutual support we have provided each other through some of life's darkest moments. (The enormity of the balance he provides my life is so keenly felt now while he is deployed!). And if I ever thought I couldn't cherish my son more than I already did before, I was wrong. The twinkle of joy in his eyes, the sound of his laughter and his bright and inquisitive nature have all helped me continue to get out of bed each day and look forward to the future.

I have learned to take nothing for granted. Good health, a cool breeze on a warm day, even bad things that later turn out for the good...I now have better patience for God's plan. Even though I may still sob for missing Hailey, I can look back upon our journey with her and see the small gifts along the way...that we got to enjoy a month at home with her, believing we had a happy, healthy family. That she didn't die at her lowest point in the hospital, when she was so emaciated and sickly-looking. I'm not sure if I could have survived losing her looking like she did then...with barely any life left in her eyes. Instead, she held on and gained weight and I got to see her rosy cheeked and bright-eyed and a more healthy size before we had to let her go. I was confident from the way she looked at me then that she KNEW the love we held for her.

Our sweet Hailey was full of gifts, even in her passing. My husband and I prayed that after we removed Hailey's breathing tube that she wouldn't struggle or suffer greatly. We prayed that our son would get to hold her one last time, and that we would get to hear her voice once more. God, and Hailey, allowed us all of that. She held on just long enough for one last visit with her brother, and moments later in my arms, her voice let out the softest of sighs that everyone in the room got to hear before I literally FELT her soul leave her body.

The moment I felt Hailey leave is the closest I've ever felt to Heaven, and yet since losing her, I've also felt so much more in-tune with the world around me here on Earth. I look for signs from my daughter, and connections I never would have noticed before.

When Hailey was alive and fighting the good fight, there were a few songs I used to play in an attempt to bring her comfort. One of them was an acoustic version of How Great Thou Art. Well, a few weeks ago after my husband deployed, I fell asleep praying to God and Hailey. And during the night, I dreamt so vividly of How Great Thou Art being sung like I'd never heard it before...first by one singer, then by a duet, only to close with the magnificent joy I could only attribute to a majestic, Heavenly choir.  I knew it was like nothing I could ever hear on Earth, and I felt like I'd received another gift from my daughter.

For the rest of my life, I will remain in awe of Hailey's spirit and strength. I will remain thankful for these many gifts with which she continues to bless me. She has taught me how to survive, how to choose love, how to embrace my sorrow but also search for a healthy way forward.

On the occasion of Hailey's first birthday, I'd like to celebrate her short but impactful life with a fabulous idea from a dear friend. I'd like to launch a Random Acts of Kindness/Pay it Forward Campaign in Hailey's memory. The rules are simple: by following this link, you can download cards to hand out when you offer an act of kindness in Hailey's name. They include a link to Hailey's story, as I've written it in this blog. They also include a link to a Facebook page entitled Honoring Hailey, where I'd love it if people would post about the things they've done for others in our daughter's memory. Please help us expand her legacy of love --- it is the best gift you could ever give my family, I promise.

With love, and a grateful heart. Happy 1st Birthday, dear, sweet Hailey Grace!!!

What We Need

Sometimes in life, we are lucky enough to receive what we need, when we need it.

I think back to our time with Hailey in the hospital, and the days when doctors were considering diagnoses that would have meant prolonged suffering with little quality of life for our daughter before she passed away. These scary moments allowed me to feel thankful when Hailey's heart failed her quickly, and her suffering was greatly reduced from what it could have been.

I think back to the days shortly after Hailey passed away, when a good friend asked to host a half-marathon for Hailey's half birthday. At first I was daunted by the prospect of participating, as I felt as Hailey's mother, I must. But we all ran the miles over a few days, and the half-marathon turned out to be the best thing for me. Running got me moving, and it morphed what had been a laborious hobby of mine into my cherished bonding time with my daughter. I'm 25 weeks pregnant now with Hailey's baby sister, but I'm still running my miles each week, and talking to Hailey the whole time. Whether out loud or in my head, I tell her I love her every 30 seconds or so while I run. I push myself harder for her. I pray for her forgiveness that I couldn't give her a better life, and I ask her blessing and support to help me to be the best mother I can to her big brother and baby sister.

I think of last night, when I lay in bed by myself, missing Hailey. I cried as I looked through pictures of her, and wished my husband was here to give me a hug. I started to Google support groups for folks who have lost a child. I haven't been to one before, mainly because I knew after losing Hailey that we were about to move and I didn't want to go through something that raw with folks and then have to tear myself away to relocate across the country. And so last night, with my husband deployed halfway across the globe, I thought maybe I could find one.

People have been so, so kind since Hailey got sick and then passed away, but sometimes all that can help is just talking to someone else who is walking a similar path. Even though I might usually feel emotionally at peace with losing my child, I still ache from missing her. And now I don't have the physical proximity of my husband to hold me and let me know he feels the longing for our daughter as well.

It can also feel very isolating at times...to feel this curse of losing a child and to feel like you are the only one you know who has gone through it.

Unfortunately, I didn't stumble onto any nearby support groups. Attending would also require the logistics of a babysitter for my son since I'm on my own for a bit...but today, THE VERY NEXT DAY, I got what I needed. A friend reached out because she knows someone here locally who has also lost a child and asked me if I'd speak with her. My heart leapt at the thought and I eagerly agreed. I know everyone is at different points in their lives (and in our case, journey of loss), and this woman and I may or may not click, but it made me so happy to have this opportunity to connect with someone else who has been there. Even if it is just for one meet up...although hopefully we can become friends! At any rate, I just felt blessed when this happened today, and thankful to the universe.

With love and a grateful heart.

The Invisible String

If you haven't heard of it, The Invisible String is a children's book I first became acquainted with while I was in the hospital with Hailey. A kind person brought it by as a resource to help my young son through the impending loss of his baby sister. The book itself doesn't focus on loss, but the love that connects us all, no matter what, near or far.

This book just reentered our lives once again, through the kindness of yet another, as a gift to our son upon his third birthday. I think in this instance, it will help our little boy feel connected to his father, even though Daddy is traveling to the other side of the world for a while.

The significance of this book and its emergence in our lives is not lost on me. In fact, I've thought about it quite a bit, especially as I've heard from so many of you over the past number of days as we've endured a health scare with baby #3 right before my husband departs. And while many of my posts speak of faith in the midst of this challenging road we are on, I want to write this post in part for the people who do not follow a faith, but DO follow their hearts.

At numerous points over the past number of months, I have been so touched by the many ways in which people have lifted us up. Not the least of these is when I hear from folks who don't profess to pray or put much stock in religion, but offer up their heartfelt hopes for my family, in whatever way they can. They are letting me know that invisible string of love reaches even further than I often know.

The absence of that string --- that sense of humanity and love that connects us all --- is perhaps one of the worst feelings I've ever felt, and one I came into contact with a few days ago. When the nurse practitioner at my OB's office told me she was referring us out to specialists due to two abnormalities on the baby's anatomy ultrasound, I begged her to find a way to schedule us before my husband's deployment. She said they'd see what they could do, but I will admit I didn't have great faith in her statement after the way the entire appointment had been handled. I checked back in later that day, and the next day. No news whatsoever, and our timeline was quite short. I asked if I could call the specialists myself to see about the appointment and they gave me the number. I didn't want my husband going to war, worrying we might lose another child. I was heartsick and desperate.

I called the specialists' office and spoke with the most heartless person I've encountered --- really the ONLY one --- since we lost Hailey. She told me she wouldn't speak to me, wouldn't give me an appointment, and that they would only deal with the referring doctor's office. I calmly replied that I understood that, and believed they should have already had my referral in their possession for a bit of time, but just wanted to call to explain our situation. I told her we had buried our daughter in January, that my husband was deploying in days, and that I didn't want to be trying to track him down with potentially bad news as he leapfrogs across the globe to his final destination. The woman curtly replied that she understood and told me the doctors would "get to it when they get to it", and hung up.

I felt so crushed, I cried. It wasn't that they couldn't fit us in --- that, I could understand and accept if I had to. It was that the woman didn't care, wouldn't take my name, wouldn't even LOOK. My suffering was simply a nuisance to her. I understand rules and regulations exist for a reason (I did marry into the military, after all), but it all just felt so cruel. Like every painful moment we had been through didn't matter at all. She at least could have been more gentle about shutting the door in my face, rather than slamming it. I felt disconnected from the world around me, in suffering, in lack of understanding, desperately reaching out for that invisible string. In that moment, dejected, I gave myself up to the world and whatever else it might subject us to.

It wasn't that I feared what may be wrong with the baby. Of course I felt worried, but that bit of stress I'd already agreed to give up to God and our Hailey-in-the-Stars. Baby #3 would either be okay, or she wouldn't, and we would face it either way, just as we did with Hailey. Any control I tried to exert was out of an aching concern for my husband's heart. It is already hard enough for him to leave us for this deployment (and for us to see him off) and if I could move mountains to spare him any suffering, I will always give it my best effort. And I did. Apparently to no avail.

But then, the following day, after I'd already given up, I received a phone call from the specialists. Apparently the doctors had finally gotten to our file, and were willing to give us the next available appointment, which was on Monday. Excitedly, I asked my husband to clear it with his command. Then I spent the weekend praying to God and Hailey-in-the-Stars, and trying to truly enjoy some of our last days together with my husband.

At our appointment on Monday, I found out from the woman conducting the ultrasound that we had been referred to them not just for the two abnormalities I'd been told about, but a third as well. My heart dipped. There was a kidney concern, a heart concern, and (news to me!) a concern with the nuchal fold measurement. The nuchal fold measurement can pertain to Downs Syndrome, but luckily, I already knew from the genetic testing we'd done earlier in the pregnancy that baby #3 does NOT have Downs.

I clutched the necklace around my neck --- one I wear in remembrance for Hailey --- and prayed through the whole ultrasound. The tech was very sweet and kindly obliged us and turned on the 3D function to show us our daughter's face. It is too early on to have the fatty baby cheeks, but I knew seeing her face would do our hearts well and help us to bond with our daughter throughout whatever storms we might be about to weather. Here is our little beauty!

And then the time came to meet with the doctor. I wondered what the odds were that both the heart AND kidney (it was just one that had been off) could be okay.

My husband and I received a blessing we often prayed for with Hailey, but so rarely ever received. GOOD news!! Whatever the odds were that everything could be okay, they were! I don't know if our issues from the first ultrasound were due to old equipment, a bad tech, the baby's poor position that day or likely some combination of all three, but who cares!! Our daughter --- picked out by both God and Hailey-in-the-Stars --- is okay! And please know, for all those parents out there who don't get the news they were hoping for, I understand. We've been there. So I don't offer our proclamation lightly or without sensitivity for the broken hearts of others. I just need to embrace our good days when we have them.

With love and a grateful heart: for this good news, that it could be shared in person with my husband, and for the invisible string that connects us all.

How Do You Do It?

In a previous post, I wrote about how grief and happiness are not mutually exclusive in my heart. Along those same lines, neither are hope and fear. I think hope and happiness are such powerful emotions because they can bloom in your heart DESPITE grief and fear.

My husband is unfailingly happy and optimistic by nature, and I envy him for it. I'm reminded of the sayings, "ignorance is bliss" and "don't borrow problems you don't yet have" and "we'll cross that bridge when we come to it." Yet when faced with any tough situation, my logical mind cannot help but consider the potential of all possibilities, many of them negative. But what I've come to realize is that if you let yourself live in that space permanently, it can be unhealthy. Worrying does not change the outcome.

So at some point, while my mind might still have to look at all paths, I must still make the tough choice to have faith. Choosing to believe is actually the only piece of control I have. And yet, as we navigated our journey with Hailey, I worried that if I spoke faithfully, people would feel that I was naive about the situation --- that I could view it only with the hope born of a mother's love. I felt it necessary to couch anything positive that I said with a leveling comment about the odds or understanding the science of it all. (Just as with grief and happiness and hope and fear, I do not believe faith and science are mutually exclusive either!).

Why did I do this? Why did I need to prove that my faith was not blind? Perhaps because faith with both eyes open is even more powerful. I knew what we faced with Hailey, just as I have a good idea of the risks associated with my husband's upcoming deployment.

So do you wonder what is circling in my heart and mind right now when I'm burying my daughter and seeing my husband off just months apart? I can't stop thinking about how we found out just two days before Christmas that we were going to lose Hailey. I go back to watch this video, recorded at about 2 a.m. on December 30. It is of me reading Hailey my favorite childhood story until she falls asleep in my arms. She went home to be with God later that day. Holding your child in your arms as she dies is faith with both eyes open.

For the past few nights, I've watched my husband pack his bags for deployment and then take an hour or more putting our son to bed because he can't stand the thought of parting from him for so long. We are both optimistic about this deployment, especially with our guardian angel, Hailey, watching over us. But of course we know the risks. That is faith with both eyes open.

 

And then came today. The 20-week anatomy ultrasound for baby #3. I actually scheduled it for 21 weeks, just so my husband could be present. It was his last chance to see this baby before he deploys, which was particularly special since he won't be home for the delivery. I was so excited, and had been hoping the ultrasound tech would turn on the 3D feature so we could catch a glimpse of the baby's face, but it was not to be. It was an older machine that didn't have 3D capability and unfortunately, the baby was poorly positioned for the ultrasound anyway.

After a while of the ultrasound tech trying to get every measurement she could despite the baby's difficult positioning, my husband had to leave to head to work. The tech and nurse practitioner didn't tell me until after he left about the two abnormalities they'd noted during the ultrasound. They took just long enough that my husband had made it into work, that I received the news alone, and that I couldn't get ahold of him because he was sitting in a secure briefing.

I sat there, physically numb. My mind screamed, "NO, I can't do this again! I can't do this by myself while my husband is deployed and I'm still grieving Hailey and raising our son! This is why we did genetic testing!" Outwardly, I quietly accepted the fact that I was being referred out to a maternal fetal medicine specialist for a follow-up ultrasound. I begged the office to find a way to get it scheduled in the little time we have left before my husband leaves. I don't want him to deploy, worrying about the unknown. As of right now, we still don't have an appointment.

On the drive home, I thought of my rather stoic Irish grandmother, who always says we must just do the best we can. That we must keep going. And I realized it doesn't matter if these ultrasound abnormalities are a fluke or something more serious. It doesn't matter if every piece of me screams at going through this without my husband here. I don't have a choice. As much as there is some small emotional relief at railing at the injustice of it all, in the end, that is not a healthy place to live. It will not change the outcome.

And so I sit here, anxiously awaiting news of an appointment date. I pray, and ask for your prayers, that it is before my husband deploys and that he can be there. But more importantly, that this precious gift in my belly is okay.

I will allow myself to feel anxious about the appointment, but the rest I have to give up to God. Through everything today, and even in my dreariest moments, I couldn't stop thinking about the hymn, "It is well with my soul." It was penned by a man who faced immense personal tragedy. (Click the title below if you'd like to hear it on YouTube).

It Is Well With My Soul

When peace like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul.

There is no better example of faith with both eyes open, and from this, I take my cue.

With love and a grateful heart.

Three Deer

In our family, we love deer. It is true my husband hunts them, but we give thanks for the food they provide and don't let any go to waste. The hunting isn't about the killing either. My husband could spend hours sitting in the woods, just watching the animals in their natural habitat. He sets up trail cameras to watch them, and we've viewed wonderful moments like a Momma dropping an apple on her baby's head to get it to eat. Really, deer are very special to us.

In fact, on our wedding day back in 2013, my husband and I were a little distracted, but all of our guests spotted three deer on the backside of the country estate in Nashville where we married,
watching over us on our special day. We felt blessed, and fancied they were my husband's late father, and my late aunt and grandfather.

Since then, we have decorated our home to show how we honor deer, to include a stuffed animal deer in my son's room, and crib sheets and deer portraiture in the baby's nursery.

Two weeks ago, when we traveled to Massachusetts to visit Hailey's grave for the first time since we buried her, my husband and I were both hoping for a sign of some sort that our daughter was with us. We were there, in part, for my husband to spend some time with Hailey before deploying halfway around the world. We each took our turns, laying facedown on her grave, bawling our eyes out as we tried to cradle her precious body in our arms despite the earth between us. I know I asked our guardian angel to watch over and protect her Daddy while he is in harm's way. I think my husband sneakily ordered Hailey to instead focus her attention on watching over me, our son and the baby in my belly back home.

We left this beautiful flower arrangement at Hailey's grave, lovingly and freely designed and provided

by an old high school classmate of mine. (I swear the photo doesn't do it justice, but I was already crying when I took it!). And then we prepared to leave. As I turned the car on and began to slowly drive away from our daughter's resting spot, I felt more than a little sad. I longed to feel Hailey close to me, to feel in some way that she was with us that day. There were a few hymns that I always used to play for her to help bring comfort: one was His Eye Is On the Sparrow. And so I'd kept my eye out for little birds that might land nearby. But really, in my heart of hearts, I'd wished to see majestic deer like the ones who had blessed our wedding day.

As I steered the car around the winding, paved alleyways that led out of the cemetery, a flicker of movement amid the tombstones ahead caught my eye. It was approaching 8 p.m., dark storm clouds were rolling in and I thought, surely it couldn't be! But just ahead, I spotted one deer. Then a second, and then a third. Our three deer! Elated, I called out and drew my husband's attention. He lit up, admitting to me he'd been hoping we'd see some deer near our daughter, just like I had. His father, my grandfather and my aunt...our three deer watching over our little dear. We both felt so thankful to God, and packed this moment of light away in our souls as we prepare to face some tough days ahead.

With love.

Mixed Emotions

The most important thing my husband and I needed to know was that our baby did not have Hailey's syndrome. We were so incredibly thankful and overjoyed when we found out this pregnancy is in the clear. It's interesting to me...when the genetic counselor first talked to us about the syndrome and told us the odds for future pregnancies were risky, I expected her to say they were 50/50 or worse. When she told us it was a 25% chance with each pregnancy, I thought, well, that isn't so bad! I mean, of course you hope the bad odds are as low as possible and I sure would have appreciated them being even lower...but I thought, my tender, aching heart can brave a 75% success rate of a healthy baby.

We hoped for the best. We tried to take nothing for granted. I prayed the Lord wouldn't ask me to give up two children in a row. Sadly, I've heard of others who, even with 1 in 4 odds like us, still have borne multiple effected pregnancies in a row. My heart aches for these folks. Finding out this baby was healthy was such a gift, and I prayed my thanks to the Lord, and to Hailey. And then we settled in to wait the few additional days it would take us to hear back about the chromosomal analysis, which would reveal something like Down Syndrome, as well as the gender of the baby. I reminded my husbanded we still needed to pray that this child be protected from any of the more common anomalies that could still occur, and my husband knew I was also praying that baby #3 was a girl.

It isn't that I don't love having a son or wouldn't want another one. The most important thing to me is the baby's health. But selfishly, and for the sake of my own grieving process, I thought my life would be a lot harder if I only had a daughter in Heaven, and not here on Earth. I still have all of the beautiful baby girl clothes I had hoped to dress Hailey in, and the dreams of fostering a close mother and daughter relationship like the one I have with my Mom (and now, my mother-in-law as well). I also knew one of the hardest things for my husband in losing Hailey was how he had looked forward to someday being a mess on her wedding day, as he walked her down the aisle to give her away. I wanted that for him, too. So every night, I lay in bed and fell asleep clasping the necklace around my neck with Hailey's name on it, praying she had picked out the perfect sibling.

The day before we moved to Georgia, I went in to the hospital for my final ultrasound with the high-risk doctors. Everything on the baby looked great, and it just so happened they had the results of the chromosomal analysis. All normal...AND...WE ARE HAVING ANOTHER GIRL!!!! I was so happy and thankful, I jumped out of the chair and hugged the genetic counselor, tears in my eyes. I couldn't get out of there fast enough to get home to tell my husband. Perhaps I should have had her write it down so I could find out the gender together with him, but I wanted to do something special to give him a big reveal, no matter whether it was a boy or a girl.

In the midst of our house being a mess, and the movers walking in and out to load all of our belongings on to the moving van, I gave my husband a giant gift bag. I made up some backstory/excuse about how it was a present for the Army program he was set to graduate from the following day before we hit the road to Georgia. But once he opened it, out floated a handful of pink balloons! He was as overjoyed as I was, and we both held each other, laughing and feeling completely blessed.

And then...we both felt kind of sad. And maybe a little bit guilty. We were so overjoyed to be having a healthy baby girl, but then felt like we needed Hailey to know we didn't love her any less because she hadn't been a healthy baby girl. Both of these emotions still war within me at times. I feel like this healthy baby girl is such a gift from Hailey (and God!), and I want her to know I don't take her for granted. I know I couldn't have done more for Hailey, but I still find myself wishing I could have held her a little bit longer, showed her even more love. I will spend the rest of my life trying to be worthy of her and the gifts she helped bestow upon us.

I will admit, a few days later, when we arrived in Georgia and the moving van pulled up in front of our house to unload everything, I had a bit of a hard time. I'd done fine in Kansas as I'd watched all of Hailey's things being packed up, but watching them get carried into our new home made me cry. I don't know why, and am grateful the movers were incredibly kind about me being a little bit of a mess.

Now, as I walk through the upstairs and unpack boxes and put things away, I wonder what I will be able to face again, and what will be too hard. I LOVE the carseat we picked out for Hailey. It was brightly colorful and she only ever rode in it a handful of times. But one of those times was to the children's hospital emergency room, from which she never got to leave. That carseat sat empty in the backseat of my minivan for weeks, with the long-forgotten swaddle blanket stained with the funny color puke that sent us scrambling.

Those swaddle blankets...all the clean ones, anyway...I'm not sure I can use them again. There are certain items I more closely associate with Hailey. I think I can find my way to use the carseat again, but I think those brightly colored, beautiful pink swaddle blankets might be a bridge too far. She never got to wear too many of her clothes, so those are mostly okay...and my husband thinks Hailey might appreciate having her little sister wear some of her hand-me-downs. That thought made me smile a little.

As for the burp cloths we made by hand...I don't think I could part with those. And even though Hailey never spent a single night in her nursery, we made her bedding by hand as well. I'm still not sure I can reuse it. Not because I associate it so much with Hailey while she was actually alive, but because I link it in my mind to what now feels like the naive joy with which I labored over every detail of my first daughter's nursery. To be reminded of that hope and excitement...without knowing the awful sorrow that lay ahead of us...is often just too hard for me to think about.

So I guess all of this is a new stage of grief...having to go through Hailey's belongings...relive the past and the emotions attached to them, and try to figure out how to keep moving forward. Today, I found joy in the fact that since we are no longer living in on-post housing but rather a house we bought, I get to paint the nursery! My husband isn't convinced on the color yet, but he is humoring me. It's navy blue and he thinks it is too dark, but I told him it'd make the white furniture and the brightly-colored decor POP in a very cheerful way.

In closing, I don't want anything in this post to reflect that we aren't completely grateful to be having a healthy baby. What I am trying to show is that grief is complicated, and that even when you receive the most joyous news you ever could pray for, the grief still finds a way in. I've found that happiness and sadness are not mutually exclusive, but can live alongside each other in your heart. And that it is okay.

Once again, with love and gratitude.

It Is Never Easy

To pick up where I left off last night, my husband and I decided to try the old fashioned way to get pregnant again and to pursue genetic testing if and when we managed to conceive. I could only manage to think about things one step at a time --- otherwise, there was so much worry, it would all become overwhelming. They say stress can make it hard to conceive and I thought heck --- there are few things more stressful than burying a loved one! I was nervous about our chances and the countdown clock to deployment was ticking.

We were not successful that first month, but I told myself that was okay because the medicine might still be washing out of my system. The second month, I had a dream that felt very clearly to me like it was from Hailey, like I was being guided to it like Scrooge was guided around by the ghosts of Christmas past, present and future. In it, I held a positive pregnancy test in my hands. When I woke up, I told my husband about the dream and that I believed we would conceive that month, and we did! Weeks later, I cried tears of joy and thanks to our angel in Heaven as I did indeed hold a positive pregnancy test in my hands.

So at that point, we'd crossed two hurdles. I was surviving my unfiltered grief, and we'd managed to conceive our third child. But then we faced our next challenge: genetic testing. It was never an option in my mind to forego the testing, and this is where I must admit to all of you that I am a hypocrite. I do believe that God makes everyone as they are meant to be and this foundation is how I manage to accept so many different walks of life.

I believe that God made Hailey just as she was meant to be, and I don't regret a single moment that I spent with her. I would have given my life to spare hers. I can't tell you how many minutes and hours and days I would sit in the hospital and hold her, and try to push all of my love and my very own life force into her as if I stood a chance of healing her.

But when it came time to try to have another baby, I needed to know if the baby had Hailey's syndrome. And if the baby did, maybe if I were a better or stronger or more faithful person, I would be able to stand up and say, "this is God's plan", and continue with the pregnancy. I want to be honest with all of you and admit that I didn't think I could, for a number of reasons.

First, I've needed to have c-sections to deliver each of my children. While of course there are women out there who have had many c-sections and are fine, most doctors seem to think you should try to keep it to two or three. I've already had two.

Second, I thought about what losing Hailey put our entire family through. It is both a blessing and a curse that our son is too young to remember his baby sister, but if we lose another child, he would be old enough to remember. And he'd remember all the time he lost with me, both because of the time I spent in the hospital, and the time I spent swallowed up with grief. Add to that, my husband will be half-way across the world for the second half of this pregnancy and the birth. I know the Army would send him home if our baby was dying, but that is a lot of worry to put on my husband for the time that he is far away.

Last, and most importantly, is my real reason for feeling like I couldn't give birth to another child with Hailey's syndrome. I could not helplessly hold another child, formed for nine months within my own body, as he or she suffered and lay dying. Hailey's syndrome plagued multiple systems of her body and it was severe. I look back through all of my photos of my time with her in the hospital, and it breaks my heart how tired and sad she looks in some of them. There is one in particular where she looks like an old person who has seen the worst that people can do to each other and is just tired in her soul. There are others where she has fallen asleep with her head thrown back and mouth thrown open, desperately trying to breathe and to hang on.

I was worried that having to walk that path with another child would kill ME, heart and soul. I felt I couldn't knowingly bring another child into this world to suffer that kind of existence. Now, I know we showed Hailey positive things, like the power and beauty of love. But everything we put her through medically was because we thought she could get better. I didn't think I could do all of that to another child now that we knew there would be no chance.

I know that by sharing all of this, some of you may judge me or disagree with me. I hope no one says anything hateful, because it would cut me to the core. But I am telling you all of this anyway because abortion is a very sensitive topic in our society. And I just want people to know there are stories out there like ours, and to know how we feel. That it isn't a black and white issue. It is so, so easy for folks to judge, but until you've walked a mile in someone else's shoes, it is hard to know how YOU would truly react. I'm not trying to change your mind or your beliefs, whatever they may be. I just ask you to be empathetic --- to not take it for granted if you've been blessed enough to never walk the path we are on now.

At any rate, we proceeded with testing and I opted for chorionic villus sampling. It did come with a slightly higher risk of causing miscarriage, which terrified me. The odds might not sound too bad to you if you heard them, but the odds that Hailey would have the syndrome she did were like 1 in a gazillion so I was taking nothing for granted. I chose CVS testing despite the higher risk because it could be done earlier on --- between 11-13 weeks. An amnio can't be done until 15 weeks and for either procedure, results take 2 weeks or so to come back. I could barely stomach the thought of terminating the pregnancy if the baby did have the syndrome, and if that was to be our path, I wanted to face that as early as possible. Sadly, I've had friends who have medically needed to have abortions after 18 weeks gestation and I cannot tell you the heartache they felt, losing a child they could already feel moving inside of them. That was another layer of suffering I didn't think I could endure after losing Hailey.

As the day of the procedure approached, I grew more and more apprehensive. I scheduled it so my husband could be there, and my Mom flew out to help with my son since I'd have to be on bed rest for a few days following. My husband and I talked about whether or not we'd be able to terminate the pregnancy if the baby was sick, and each of us felt more and more uncertain. And that's just it --- I think if you are a well-adjusted person, choosing to end a pregnancy is NEVER an easy decision. It comes with its own anguish.

I thought about our journey, and the blog posts I write here, and wondered if I'd ever be honest with people about what we faced and our feelings on termination, knowing what a polarizing issue it is. Part of me hoped the baby would be healthy so I'd never have to. But another part of me promised that no matter what, I'd be honest with the world so that people have more context when they pick their side of the issue. And perhaps maybe, knowing our story, they will at least speak more gently to others in the future.

With all that being said, the big day finally arrived. I had to show up to the hospital with a full bladder, because I guess that helps the ultrasound tech who helps guide the doctor doing the procedure. I won't go into too much detail, but I will explain a few things because I want you all to know that Hailey was in that room with me. CVS can be conducted either transvaginally, or with a needle through the stomach. It all depends on where the fetus has implanted in the uterus. It is my understanding that the procedure is much harder to tolerate when having to go through the stomach.

Well, when we got in there and the doctor saw where this baby had implanted, she said she'd have to go through my stomach and even then, wasn't sure she'd be able to access enough of the placenta to get enough material for testing. She asked me if we wanted to wait a week and try coming back, but I told her we couldn't because the Army was moving across the country in a matter of days. We were just going to have to pray and hope for the best.

The doctor then told my husband and I they were still waiting on some of my blood work to come back before they could start the procedure, so she said I could empty my bladder (which was about to burst!) and go have lunch, as long as I drank more water. So we wandered down to the hospital cafeteria --- the whole time I was lost in a daze. I tried not to get all worked up. After everything we had gone through with Hailey, I wondered why we were once again being faced with a decision with no good options. I couldn't wait to have the procedure, but doing the procedure that day might not even be successful. And it could all cause a miscarriage anyway. And going through the stomach was the most painful and I'm SQUEAMISH! I took some deep breaths and decided I just needed to trust in God, and by extension, Hailey.

When we returned to the exam room after lunch, I lay on the table as they began to get the big needle and everything else ready. I clasped the necklace around my neck with Hailey's name on it, and I prayed. I prayed for some of my daughter's strength. She faced so much pain for us, and I didn't want to disappoint her by being a wimp about the procedure. I prayed as the ultrasound tech confirmed one last time the position of the placenta. And lo and behold, my little angel had her hand on me in that exam room! Everyone was shocked to see that after emptying my bladder, it had tilted back in the opposite direction of a normal person's, allowing the baby's placenta to move into the perfect position for the procedure to be conducted transvaginally. But more than that, with the new location, the doctor was completely confident she could gather enough material for testing to be successful!

The procedure was unpleasant but not overly painful, and after experiencing that miraculous turnaround, I felt confident Hailey was still watching out for us and it may sound foolhardy, but I then had a sense of peace that the test results would come back clear. I had faith at that point, but worried people would think me naive or lacking in caution, so I was careful not to sound overly optimistic when I spoke of it to anyone. How silly is that? What shame is there in having faith, or being optimistic? Truly, there is none.

About a week after the procedure, the genetic counselor surprised me when she called me while I was in the middle of a vet appointment with my dog. I knew a chromosomal analysis would reveal the gender of the baby as well as something like Down Syndrome, and that test was likely to come back first. I had been warned the test for Hailey's syndrome would take a bit longer, but the lab surprised us. It was the same lab who'd handled Hailey's genetic tests while she was alive --- they knew us and our story and because of this, they had worked to rush our results for this new baby. The counselor brimmed with joy as she gave me "the happiest news ever": our baby did NOT have the syndrome!!!

I was so happy I cried, and eagerly wrapped up the vet appointment so I could rush home and give my husband the good news in person. At that point, all we were waiting on was the gender and Downs test, which I will pick up with my next blog post, if any of y'all are still with me. I know this is a lot to take in, and perhaps I'm oversharing, but this blog is my form of therapy and I thank you for your patience and support.

With love and a grateful heart.

The Decision to Try Again

I have been long overdue to write this blog post, but a lot has been going on in our lives these days and so here I finally sit on a Friday night, sharing this next chapter in our story. As most of you know by now, our family is once again expecting a new baby and we are very excited!!! But let me start at the beginning.

Our sweet Hailey was born on September 5, 2016 and went home to be with the Lord on December 30 of that same year. I first took her to the hospital emergency room in October when she threw up a funny color, and for our first weeks and then month+ in the hospital, we were hopeful that she could get better. But by mid-to-late November, it seemed to be growing clearer that whatever Hailey had was very serious and although we didn't yet have a specific diagnosis, everything on the table at that point was terminal in one way or another.

So, one night, my husband and I sat in our room at the Ronald McDonald House and faced both the prospect of losing our daughter, and what this might mean longer term for our family. There are questions that pop into your head, and you feel ugly for even thinking them, and I think sometimes grieving parents lash out at each other if one should dare to give voice to them. It feels wrong to discuss having more kids when your second child is losing the battle for her life right before you. But when my husband raised the question, I didn't bite his head off. The thought had been in my head, too. Perhaps he was just the one brave enough to face it first.

My initial reaction was that our son would just become an only child --- my little partner in crime as we powered through moving around with the military and my husband's deployments. I specifically remember being adamant that if Hailey passed, we were selling the minivan we'd gotten immediately. I wanted that symbol or our burgeoning family gone, STAT.

My husband replied more calmly, and told me he thought trying again showed a certain amount of resiliency. I can tell you, that did NOT resonate with me! My exact thought is that people could go F*@K themselves with their resiliency --- I didn't care what anyone else thought. (Sorry for my language, but that was my very emotional reaction!).

My husband's second reason hit me far deeper. Having already lost his father, and facing the prospect of burying our daughter, my husband admitted that it made him nervous to have only our son. That if anything ever then happened to HIM, he wasn't sure he could survive that. To reach old age, and to have outlived all our children. To not have grandchildren to someday bounce on our knees and spoil. I realized that despite the agony of losing Hailey, I did still share my husband's vision of having multiple children. (But truthfully, even if I hadn't, I think I still would have tried again just for him. I regret every day that I never got the chance to meet his Dad, who is lauded by everyone who knew him as being the most wonderful man).

In the final days of Hailey's life, a genetic counselor came to meet with us. We discussed Hailey's suspected diagnosis (the formal confirmation of which we didn't receive back from the genetics lab until the day after we buried her). We discussed what it meant for our families (as it was the result of a bad gene inherited from each side) and what it meant for us, should we want to have more children.

We were presented with two options. (1) We could try to get pregnant the old fashioned way, and then conduct genetic testing (a) at 11-13 weeks via chorionic villus sampling (CVS) or (b) at 15 weeks via an amniocentesis. Either testing method would reveal whether or not the new baby had the terminal syndrome within 2-3 weeks of the procedure, at which point we could decide whether or not to continue with the pregnancy. I should mention, each procedure runs the risk of causing miscarriage.

(2) We could go the route of IVF, which I knew about on a very superficial level, but not much more than that. The genetic counselor warned us about what a stressful process undergoing IVF was, but told me that every family she'd known who had done it had not regretted it on the back end, when they finally became pregnant with what they knew was a healthy child (due to weeding out affected embryos before implantation). No genetic testing needed on the fetus, and no fear of causing miscarriage by doing so. But as I researched IVF, I was surprised at both the cost and the success rate for each round. A quick glance showed that one round of IVF cost roughly $12-$15,000 and my chances of conceiving were roughly 33%. And, knowing how expensive Hailey's medical bills were becoming, I was rather shocked health insurance wouldn't cover IVF as a means of potentially avoiding much more expensive payouts if we were to give birth to another child with her syndrome.

Complicating all of this even further, we knew my husband was set to deploy within about six months of us burying Hailey. We always wanted our children to be close in age - our son and Hailey had been 26 months apart. Plus, I'm getting older. So we didn't feel like we had long to wait before we tried again.

We buried Hailey in the first week of January. I'd already stopped taking the anti-anxiety medicine I'd needed to help get me through my final days with her. By January 20, I stopped taking the anti-depressants my doctor had also prescribed me a month before Hailey passed. I was scared to go off the medicine so soon after losing Hailey. I was scared about how much they might have been helping to prop me up...how consuming and raw my grief might be without them. But I knew the medicine needed to be out of my system before my husband and I tried to conceive again. We'd decided to try the old-fashioned route, since we hadn't had trouble getting pregnant before. That being said, we were blessed with our son immediately, but Hailey took five months of trying. I wasn't sure we even could conceive a third child before my husband deployed, and wanted to give us as much time as possible to try. So I pushed myself off the meds and I prayed to God, and to Hailey, a whole heck of a lot...

Through all of this and as I will mention in various parts of our journey, I SO feel Hailey's hand in all of this. I believe she is watching out for us, and I just strive to be worthy of her. To honor her, never forget her and love her always, with every fiber of my being. She was a blessing, and continues to bless us still, as I will share in my next post.

Mixed Feelings this Mother's Day

I remember the first Mother's Day I celebrated as a mother...our first child --- our son --- was to be born in July, so I was fully pregnant and I would feel him kick but he had not yet joined us. Still, we celebrated. My husband and I were happy and excited and had no concerns about our pregnancy. We bore no concept of the trials many newborns can face.

Years later, during the many days and nights I spent in the NICU with Hailey, I marveled at how many of the nurses were themselves pregnant. I wondered at their strength. Every day, they see the worst of what can happen to our babies, and still they find the courage to begin and expand their own families. My husband and I had been relatively unsuspecting. But these women, they are FULLY informed. God bless them. I wish I could give them not our sad story with Hailey to put worry in their hearts, but all of our hope and joy and the excitement and love a new baby brings.

And as for this Mother's Day --- my first as a mother with a child in Heaven --- I just don't want to celebrate it. I wish it would pass without notice. You see, there are things you can know, logically, to be true. In my mind, I know I did everything for Hailey that I could. I know I left nothing on the table. I didn't leave her side for weeks on end in the hospital. I fought for her. I set all else aside for her. Truly, if I have any regrets, I know it is my guilt nitpicking and that I'm being overly hard on myself.

But in my heart, it is a different story. In my heart, no matter what my mind knows, I feel as though I failed my daughter. I know it was an unfortunate mix of a bad gene from both my husband and I that caused Hailey's terminal genetic syndrome, but somehow I feel the full weight of the blame. It was MY body that grew her for nine months. It was MY body that set the scene for the faulty genes to meet.

So yes, I KNOW I am a good mother to my son. I KNOW I was the best mother I could be to Hailey. But it is still a bridge too far for me to celebrate Mother's Day this year. I think I will likely be fine next year. But this year is too soon. Too harsh. Too much a reminder of my failings.

Thankfully, I have a wonderful friend who understands this journey I'm on and sent me a special book that was so perfectly timed in its arrival this week. It is called, "You are the Mother of all Mothers," and it tells me exactly what I need to hear. That I didn't fail Hailey. That I'm not a bad person who did anything to deserve this. I stare at the pages with the most simple of sentences to absolve me of my harshest self-criticisms, and try to own it. I'm working on it.

Tonight, I'd like to close with a quote I read on another friend's blog. It cracks my heart open every time.

"Lord, hold my child close to You,

And if You will, I plea,

That as You hold her close to You,

She remember when I held her

close to me."

-from Out of the Mouths of Babes 3/3/08

The Untethered Life of a Military Family

As most of you know, we are a military family. With this life comes both struggles and adventures, and we feel lucky to live in the United States, where the country respects its service members so highly and those of us within the community care for each other so well.

While it was hard to live far away from our families when Hailey took ill and passed away, our friends and neighbors took care of us in a way that allowed our family more freedom to worry with us, visit with Hailey, and mourn with us on their own terms when they came to visit. Our friends and neighbors viewed with clarity what we needed most, be it dinners, having our house professionally cleaned, or formalized childcare for our toddler so we could all spend more time at the hospital as Hailey's health deteriorated. We will be forever grateful.

When it eventually became time to let Hailey go, the military lifestyle presented me with one of my greatest heartaches: there was no way for me to keep our daughter with us, short of cremating her, which wasn't something I wanted to do. Because we move around every few years, no matter where I buried her, I was all but guaranteed not to be able to visit with Hailey. So we made the best decision we could, and chose to bury her in between my grandfather and aunt up in Massachusetts. We knew my husband would soon be deploying and that I'd likely go home to visit with family, and it would be my best opportunity to spend time by Hailey's side once again.

It hurt to come back to Kansas, where we currently live, and have no place to sit with Hailey. Trying to look on the bright side, I thought maybe it would force me to keep moving forward because unlike other parents who have lost a child, I couldn't go to my daughter's graveside every day, every week, or even every month. But, in a way, I've just felt...untethered.

When your child dies so young, you worry that they didn't have their chance to leave a mark on this world. Many members of our own families never even got to meet Hailey before she passed. They didn't get to see the light in her eyes or feel how gently she would snuggle into you. They didn't get to see how hard she fought back from death's door multiple times. And looking back now and seeing it all in hindsight, I marvel at the pain and discomfort she suffered through with such grace. Just to be with us for as long as she could.

Without being by her graveside, and with life moving forward here, sometimes I desperately look through all of the pictures I have of our daughter to remind myself she was really here. That we really lost a child. Our sweet, sweet baby girl. In reality, I want her with me always and look through the photos almost every night before I go to bed.

And then some days, when I FaceTime my Mom in Massachusetts, I find that she is at Hailey's graveside herself. It warms my heart to know that she and other members of my family tend to my daughter's resting place when I cannot. One day, my Mom even sent me this photo of the angel statue nestled above Hailey. It had just snowed in Boston, but you will notice how just the two leaves beneath the angel happen to be green when everything else around had turned to brown. I took that as a blessing from my sweet baby.

Little did I know that our military community here at Fort Leavenworth would still lift us up in not only our moment of illness and loss, but also in mourning and healing. I cried when my neighbor told me she had gotten the approval to plant a memorial garden for Hailey here on post, in the field across from our house. I cried when she told me the post landscaping company is donating a sitting bench and will maintain the garden for all the years to come. I cried at the local group of work-out Moms who are donating all the balloons for a memorial release at the dedication ceremony this Sunday. I cannot tell everyone how much this means to me.

My desperate need for people to KNOW my daughter led me to beg the medical staff who cared for her to attend her baptism and going home ceremony. It is why we invited our family, friends, and neighbors...really anyone who would come and bear witness to her existence, to be with us in that moment. It is why I write this blog. (It is why so many people who lose someone they love start a charity of some sort: they find healing in giving purpose to their suffering and loss.)

Thanks to our community here at Fort Leavenworth, my daughter is physically leaving her mark on this world, and not just with her tombstone. She will leave behind a beautiful place for people to rest and enjoy the tulips as they bloom each spring and signify rebirth. They will read her name on a brass plate and maybe they will spend a few moments contemplating her.

It has been four months since Hailey passed and these folks here at Fort Leavenworth are still loving us through it, and understanding what my aching Mama's heart needs even better than I do myself. This military life is hard, and I miss sitting with my daughter, but God has blessed us with the people who surround us here.

(I will be sure to post photos of the big dedication day once I have them! A bunch of folks from the hospital are even coming up for it, and I am so thankful for how much they have loved us, too.)

With love and a grateful heart.