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.
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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!!!