Gifts of the Heart

Even when you feel like your world is ending, tomorrow still comes. While it was hard to imagine life without Hailey, it is true that she is gone and we are still here and life does go on. You can even still find happiness, as we did this past week. My husband, son and I traveled to Georgia with my mother-in-law to see our new house, and then we attended the truly joyous occasion of my brother's wedding. That is why I've been missing from this blog for a little bit longer than usual. That, and I don't like to force what I write. Rather, I just go with what I'm feeling called to speak about.

My last post was about gifts for healing. Today, I want to write about gifts of the heart. I've mentioned before the nurses who took such good care of Hailey, but today is really about paying homage to them.

We were in the hospital with Hailey from six weeks of age until we let her go just shy of her four month birthday. Every day, the nurses would change shifts at 7 a.m. and 7 p.m., and I would sit there and listen while they updated their replacement on everything that had happened in the past twelve hours. Yes, these women worked twelve hours at a time, taking care of multiple NICU babies at once. They are like mothers on steroids, taking care of all of the normal parenting duties on top of all of the medical ones. They changed diapers, gave baths, conducted weight checks, hung medicine...they did it all. And, they sat and chatted with the parents if they were present, acting as a distraction and often an impromptu therapist for the stress of the NICU.

And while other parents did come and go, Hailey's symptoms were such a mystery and changed so rapidly, I never wanted to leave her side. With the medical staff changing shifts, I felt as though I was the one point of consistency for her medical history. But after the first few weeks of sleeping every night in a recliner by my daughter's bed, we began to meet some of our special angels. You see, if your child is sick enough and if a nurse asks, she can be dedicated to your child. If approved, every time that nurse works, she will be assigned to your baby. Your child becomes one of their "primaries."

Hailey's first primaries were women who worked on the night shift. When I first met Debbie, she reminded me a bit of my mother for some reason. I don't know why.  Debbie has been a NICU nurse for decades, with grown children of her own. She is fit, with a pretty and kind face and a steady and gentle demeanor. Everything about her gave me the confidence I needed to leave the hospital and to start spending some nights in a bed in the nearby Ronald McDonald House. She didn't mind if, every time I woke up to pump during the night, I called to see how Hailey was doing. Debbie also didn't just care about Hailey's physical well-being, but would make recommendations and enlist additional services so Hailey didn't fall too far behind on her developmental milestones while in the hospital.

If Debbie was like another loving grandmother to Hailey, then nurse Kristin was like a fun girlfriend. She works the night shift right now because she is attending school to become a nurse practitioner, and I loved the opportunity to hang out with her while she took care of my daughter. Kristin is straight-forward, upbeat and a bit sassy. And what I loved is that she didn't treat Hailey like a very sick little baby in the hospital. She talked to my daughter as if they were besties having a slumber party. She thought my daughter had some sass in her as well and gave personality to her updates. It made me smile that Hailey not only had people mothering her, but others who treated her like the best friends she'd likely never grow to have. Kristin loved the cute little girl outfits I'd once picked out with such hopeful joy, and encouraged me to bring them to the hospital so we could still dress my daughter in them.

Finding primary nurses for the evening seemed to be easier than for the day shift. We went a bit longer there without having any dedicated nurses for Hailey. I felt bad, because it was becoming obvious that Hailey was very sick, I was a wreck, and many of the nurses were pregnant themselves. I felt guilty that at a time in their lives when they should be doing nothing but feeling excitement and joy for their own pregnancy, it was likely tempered by all the sick babies they helped take care of every day at work.

Enter Shelley and Abby. Shelley has one of the most happy faces I've ever seen. In some moments, she can grow serious with you, but she almost always has a twinkle in her eyes. Her cheerfulness is not overwhelming, but flows throughout her in a steady and comforting way. She was with me on the day in December when we had to take Hailey for a swallow study. Hailey had returned to bottle and breast feeding, but had started to have a difficult time...the swallow study was very stressful for both Hailey and for me...I won't go into the details, but it became clear to me that there was one more thing that had gone haywire for my precious daughter. And I think that at that point, I just knew we weren't going to survive this. Shelley and I wheeled Hailey back to her room and I just lost it. I told Shelley I didn't quite understand why I was sobbing over the swallow study of all things, but she didn't judge me. She just held me and comforted me.

Abby was another day-shift nurse who kindly dedicated herself to Hailey. Abby is beautiful and young and about to get married. We excitedly talked about wedding planning details and honeymoon destinations. But what impressed me the most about Abby is how much she has overcome in her personal life. She has the figure of a dancer, so I wasn't surprised when she told me it had been her passion. But when I found out about the extensive hip surgery she'd had to endure at such a young age, and the rehab and slow recovery that followed, I was amazed to see her standing on her feet and working her twelve-hour shifts. How selfless and amazing! Abby was straight-forward and efficient and took care of my daughter with a proficiency beyond her age.

And then there is Sarah, who will always hold a very special place in my heart. She is another day shift nurse, and was one of the last to become a primary nurse to Hailey. She might have been with us for the shortest amount of time, but that is why I love her so much. All of the other nurses had been with us all along the way, when Hailey was sick but maybe not dying. But by the time we met Sarah, it had become relatively clear that Hailey was dying. Thanksgiving passed, Christmas was approaching, and many nurses were understandably taking time off around the holidays. If this was the end, it broke my heart that my daughter would have a revolving door of nurses caring for her, rather than those that knew and loved her. But I didn't have the heart to ask anyone new to serve as a primary for a likely terminal baby right at the holidays. I figured it must be hard to be a NICU nurse and to lose babies and I didn't want to take for granted where the nurses might be in their own personal lives or journeys. I didn't want to ask them to care for my dying daughter if they might still be mourning the last baby they might have lost.

In walked Sarah. She knew how sick Hailey was, but she still volunteered to be our primary. She didn't hold herself back, either, to protect herself emotionally from becoming attached to such a sick baby or her family. She was open and caring and there were even a few times she got choked up alongside me. I don't know if she felt that was unprofessional, but I loved her for it. I loved how much she loved us. She was the one who took care of Hailey the day we let her go be with the Lord. It was Sarah who sat with my husband and I and explained everything to us ahead of time...explained how things might go when we took Hailey off of the ventilator and her body began to shut down. It was Sarah who helped us do many of the things the hospital offered to help us commemorate our daughter before she passed, like cutting a lock of her hair or creating a hand mould. It was Sarah who helped us bring Hailey down to the chapel for her baptism and journey home. For all of this, brave and wonderful Sarah will always hold a very special place in my heart. I will always love her. My only regret is that she didn't know Hailey sooner.

All of these women loved Hailey, and us, so well. They came to her baptism and passing. They've kept in touch. They are working to trade shifts so they can come to a memorial for Hailey in May. I swear to you, they are God's angels on Earth. As horrible as our journey with Hailey was, we couldn't have been more blessed than we were with these women, and others. I'm so thankful to have met them.

Believe it or not, I have cried harder writing this post than any other. I haven't shed tears over Hailey for a few weeks, but as I sit here, I am ugly crying. You know, when your breath hitches as your tears run together with your runny nose? That's me right now. And I think it is because I love Debbie and Shellie and Kristin and Abby and Sarah so much. They spent more time with my daughter than almost anyone, and I am grateful for the love, care and companionship they gave her. It is like my husband said to me when we first discussed the fact that Hailey might not have a very long life...he said, "If nothing else, Hailey will know love." These women are a HUGE part of that.

I hope they each know how much they mean to us. That no matter how bad a day they ever have, that I believe they are walking miracles on Earth. That their job may be hard, but they make such a deep impact on people. Even on my dying day and beyond, my heart will know them and hold them close for all that they gave and continue to give to us. They inspire me to be better. To be more. Thank you, Debbie, Shellie, Kristin, Abby and Sarah. And thank you to all the other nurses who cared for us. With gratitude beyond words.

Gifts for Healing

When someone you care about loses someone they love, you struggle to figure out how to help hold their broken heart. You wish you could take some of the pain for them, and search for any way possible to help ease their suffering. Even more difficult, everyone grieves differently. What might help one person heal may hurt another. That is why, when someone offers words of support, even if they hurt my feelings, I accept them kindly because I know the person is trying to show me love. And really, one day you might say to me, "Everything happens for a reason," and I can take comfort in that, whereas if you'd said it to me the day before, it might have hurt. So it is hard to be there for those who are grieving, and I get it. I've felt the struggle before, too!

I feel so blessed to have so many people looking out for me as I mourn my daughter and try to move forward with life. There are folks like Anne and Chrystie and Aunt Valerie who have given us angel figures to decorate our home and remind us of our daughter in Heaven. There are others like Christel, Janelle, Natalie, Christie, Jenn and Sarah who have gifted me with pieces of jewelry to celebrate my daughter. There are Hailey's hospital caregivers --- Dr. Tim, Teesha, Christy, Kristen and Shelley --- who, even though Hailey has passed, continue to meet up with me and cheer our family on. There is my neighbor Lindsey, who went through the chain of command on post to have a memorial bench and garden planted in our neighborhood in Hailey's memory. There is Jena, who is having a mass dedicated to Hailey, and Amanda, who comments her support on every blog post I write in celebration of my daughter. Countless folks are lifting us up right now, in many different ways, and it is amazing!

This past week, my good friend Melani reached out to me and asked me if she could dedicate running a half-marathon to Hailey's half-birthday, which was on Sunday. I thought - oh boy! I run a handful of miles each week, but I've never had the desire to train for any sort of distance run. I'm also still working on my post-baby Mom-bod, which was waylaid by the amount of time I spent in the hospital with Hailey. This was for my daughter though, so I knew I had to participate.

Luckily, Melani told me the 13.1 miles could be split up over the whole week, and she gifted me these socks for inspiration. They are Wonder Woman socks, including capes and all, and are reminiscent of the Wonder Woman costume volunteers donated to Hailey since we spent her only Halloween in the hospital. My daughter was indeed a superhero, fighting back from her immune and digestive systems being ravaged before her failing heart was too much to overcome. She gave her short life her all, and I will always be so very proud of her.

And so, as I undertook Hailey's Half-Birthday Half-Marathon this week, I wanted her to be proud of me. In five days, I ran MORE than 13.1 miles in her memory. I ran on the treadmill and outside. I did speed runs, incline runs and endurance runs. Melani created a Facebook Group and invited others to run in Hailey's memory, and I got to see photos from women living around the country as they dedicated their runs to Hailey, and I loved it. While I had at first felt intimidated by Melani's idea, I ended up feeling so fulfilled and I received an amazing gift.

On the first day that I ran, I was simply focused on completing a non-embarrassing distance since I'm still working back into things after Hailey's passing. I surpassed my initial goal rather mindlessly. The next day when I went running, something incredible occurred. I happened to be wearing the necklace one of my best friends Christie gave me that day. It comprises a medium-length silver chain, and from it hangs three pieces: an angel wing, Hailey's blue birth stone, and a tiny silver disc with the letter H inscribed on it.

Have any of you ever gone running while wearing a necklace? Ever since my son was born, I almost always have a small one on...whether it was my son's initial or now these beautiful necklaces I have to celebrate Hailey. When I go running, they usually don't bother me. If they do, I just flip the pendant part around to fall between my shoulder blades and the problem is solved.

Well, on the second day that I ran for Hailey, I went into it much as I did the first. I simply wanted to check the box on my distance for the day. But as I started to run, my necklace started bouncing up and down like crazy, annoying me quite a bit. It hadn't done so the day before, so I didn't know why it was happening then. Frustrated at the distraction, I tried twisting the pendant around to my back. It worked its way forward once, and then immediately again, to keep bouncing over my heart. Every time I pushed it back, it came forward. I've NEVER had a necklace do that after I repositioned it for a run, especially not so frequently. And then it hit me.

For those of you who have read all of my blog posts, you may remember my post wondering, "How Will I Know Her?". Since Hailey passed so young and we spent so much of our time in the hospital, we didn't have a wide range of experiences to share. No inside jokes. Not many memories of her in our home or in special outfits or even just seeing her smile. And so after she left this world, my broken heart cried for how I was supposed to feel her with me. I've lost other family members before and at times, felt I received signs that they were close to me. But how would I know my daughter was near?

I know without a doubt she was with me on that run, and on all of the runs I did for her this week. I believe it was Hailey pushing her necklace forward around my neck, so I would feel her over my heart with every step I took. Her heart failed, but she will always be in mine and I know she didn't want me doing those runs mindlessly and alone. It was our time to spend together in celebration of her.

So, thank you, Melani. And to all of the other Stroller Strong Moms who "sweat like a mother" and donated their runs to Hailey this week. You gave me a gift like no other. You allowed me a sign to know my daughter is with me. With love, a grateful heart and happy tears.

Death, and the Potential for Destruction

I want to begin this post with a photo of us from December 30: it was taken as we baptized and celebrated Hailey in the hospital chapel before removing her from the ventilator and letting her go home with the Lord.

What do you see in this photo? I see a family. My husband, son and I hold on to each other, sad and weary and for that moment, separated from our daughter's bedside as the priest prayed over her. But the four of us are there. A family, nonetheless. Weathering this storm. And even though we are now separated from Hailey by an even greater distance, we are still a family.

You learn many things after losing a child. Some things are about yourself and what you are truly made of. What you value. You also find out who will be there for you...and sadly, who won't. Some people will offer you their tightly held and most private stories, and you learn so much more about their hearts. You also learn about your spouse, and your marriage.

Even before we lost Hailey, we learned about the strain having a severely sick child can place on a marriage. I think my husband and I navigated it as well as can be expected, but it is, as anyone would imagine, challenging. For me, I went into protective Mama Bear mode and didn't want to ever leave Hailey's side. She suffered an illness unlike anything any of the doctors had ever seen before and as they came and went off of rotation and nurses changed shifts at 7 a.m. and 7 p.m. each day, I made myself the one constant element in her care. I slept in a recliner by her bed for weeks, only leaving for an hour or two each day to grab a shower and some food.

My husband had to balance the needs of his career, making sure our home didn't implode and the care of our two year old son. The neighbors and our family helped with meals, having the house professionally cleaned, and as the days turned into weeks and months, one neighbor miraculously got our son entered into the same full-time daycare class as her son, who is his best friend. Knowing my son was cared for, happy and thriving at "school" was the single biggest weight off of my shoulders.

As our time in the hospital with Hailey dragged on, my husband tried to encourage me to leave our daughter's bedside to go out to dinner with him once in a while. He also gently asked me to make sure I remained engaged with our son. I fretted about how to do that. I love our son to the moon and back, but he is young enough that I knew he wouldn't remember these days. And thankfully, he is healthy and happy and flexible by nature. But our daughter was sick, and I knew she might only have a short time with us here on earth. How to balance that?

After some time, the doctors started to gather a more complete picture of Hailey's symptoms. She finally stabilized from massive weight loss and a failing digestive and immune system and even started to recover. Over time, I began to sleep at Ronald McDonald House instead of by Hailey's bed every night. My husband would bring our son to the hospital and we'd go outside to the playground, or have family sleepovers at Ronald McDonald House. Eventually, Hailey was doing well enough that I felt comfortable moving back to our home in Fort Leavenworth and just commuting to the hospital each day.

To say that Hailey was doing "well enough" is a bit of a misnomer. In fact, the doctors were considering some horrific and deadly diagnoses...it seemed like it would just be a matter of how long and how painful our daughter's life and death would be. So, she was stable enough for me to come home, but my first few days back were excruciating as we considered what was being discussed. I tried to spend time with our son, but I didn't want to fall apart in front of him all the time. All I could manage was to play with him or watch a show with him for maybe 30 minutes before I had to excuse myself to our bedroom to cry for two hours about our daughter. And then I'd pull myself together and go back downstairs to spend more time with my son before I needed to excuse myself and lose it again.

Toward the end of our journey with Hailey, my husband broke away from work more and more frequently to spend longer amounts of time with us in the hospital. He would hold our daughter, and try to play with her and encourage her and love her in whatever way he could.

I tended to be a grief-stricken mess in the mornings, and that is when my husband would hold me and shelter me. By the end of each day, I'd once again become worn down or accustomed to our path with Hailey, but that was when the toll was heaviest on my husband. And so I would sit and give shelter to his heart, most often as we looked for comfort and salvation in the hospital chapel. We balanced each other out well this way.

On December 23, the doctors met with my husband and I to share Hailey's prognosis. To simplify things, I will just say that her heart was massively failing. Even the life support she was on would not be able to keep her alive for more than a few more weeks. My husband and I took some time to digest this information and over the next day, realized it was time to let our precious daughter go. Yet, we wanted validation from the medical team. We searched for it, but they were hesitant to say anything that might influence our decision. The most common reason they gave for their elusiveness was that every person's value system is different.

Faced with our situation, some parents would want to keep their child with them for as long as possible, no matter his or her condition. Others placed a higher premium not on the amount of time together, but rather the quality of that time. For my husband and I, we wanted to give our daughter peace. She'd ferociously fought back from some incredible lows in the hospital. We were proud of her; we knew she hadn't held anything back, and that she just didn't have anything left to give. It was our chance to give her OUR all --- our hearts --- the most painful and most selfless thing we will likely ever do --- we let our Father take her home to play in Heaven's gardens.

In making this decision, I am so incredibly thankful my husband and I were always on the same page. We may come from different parts of the country, different political parties and different religious denominations, but in this, we were one. Some couples aren't. Sometimes one wants to keep the child alive while the other is ready to let go, and what is an incredibly trying time becomes even worse.

Maybe this is part of why people say the divorce rate is so high for parents who have buried a child. Maybe this is where it starts, and it only worsens through the loss and subsequent grieving process. I don't know. I felt overwhelmed to think that on top of losing our child, we might also lose our marriage. I'd thought we'd been doing pretty well in supporting each other and loving each other through it, but I don't want to be cocky. It is hard to predict what looms in the future. So for the past week, I avoided researching what the actual statistics may be. Some people had told me above 50%. One told me 75%.

Well, today I Googled it. I dug around. And the divorce statistics for parents who've lost a child seem to be one of the biggest myths going. I won't get into all of the details, but the summary is this: most of the stories are anecdotal and not based on empirical research. Plus, for a clean study, don't you really have to assess how healthy the marriage was before the loss of a child? That is a rather subjective thing to do in and of itself.

I won't deny that losing a child can place incredible stress on a marriage. I've heard personal stories of people whose marriage did crumble apart under such circumstances. But many things can stress a marriage to the breaking point: deployments, having to care for elderly parents, the loss of a job or a million other things. I don't know that this one is any worse. Maybe it is...everyone's journey is so different, it is just hard to really declare one way or another.

So for now, we are still a family. We are clinging to each other and loving on each other. We will add a deployment to the mix in the months ahead, but I am hopeful about how we will weather that as well. If nothing else, my husband has a new and special angel to watch out for him overseas.

Just be open. Be kind to each other. Share your hopes and fears. Try not to judge and to know that even the ugliest thoughts can be a natural part of the grieving process. Don't pull apart. If you can help it, pull together and rise above the fray, as we did on Hailey's dying day. And hope to do, for ever more.

My Fears

Somewhere along this journey with Hailey, I promised I would hide nothing. I fought it, much like Hailey fought all of the intrusions that come with life in the hospital. Any pretenses we have as humans of covering ourselves up, whether with clothes or accomplishments, are quickly stripped away in a hospital when life and death are on the line. Hailey spent most of her days clad in not much more than a diaper, and was uncovered and poked and prodded at will, but she maintained her spirit and her loving nature and I cherished her for it.

Toward the middle of her journey, when it seemed more likely than not that we were headed down a darker path than we had hoped, Hailey's nurse practitioner encouraged me to let my friends come visit. She knew I wouldn't leave Hailey, so she probably correctly figured this was the only way I was going to have any socialization. But I didn't want to have my friends visit --- I was a mess, crying all of the time and staring off into space and begging God not to make my daughter bear the weight of my sins. I was embarrassed and didn't want anyone to see me like that. And I wanted to protect them from such a bleak existence. My own husband could probably count on one hand the number of times he'd ever seen me cry. I wasn't that girl.

It sounds dumb, but probably one of the hardest things I've ever done in my life was to let my friends visit. To let them see me at worst. My most vulnerable. When my tears mixed with the snot running down my face as I begged and pleaded for my daughter's life. I might as well have been as naked as my daughter was. But these were my friends. Why was it so hard to let them see me like this? I don't know. Pride, maybe? I'm used to being the one to rush in to help others. It was a truly humbling experience to be on the receiving end of so much charity...most of which I can never repay.

I am still embarrassed when I cry in front of others. Not so much my friends, but I even cry in front of strangers now. Just like last week when I cried while donating the last of my breastmilk or when I shopped for Mom-bod clothes, yesterday I cried to the seamstress when she fitted me for the bridesmaid dress I will wear at my brother's wedding later this month. (He is marrying the most amazing woman!). I find that I cry more now than when I first lost Hailey...the memories of her suffering have faded a bit, and in their place, I am smacked in the face with the realization of all that we have lost. I live in fear of becoming the walking wounded...of being defined by the pain of losing a child.

But I promised myself something. I promised I would be kind to myself. I think the only way to survive this kind of immense and overwhelming grief is to set it free. I do that by writing in this blog. By crying when I need to and trying not to feel ashamed, no matter who I cry in front of or where. By being humble enough to take comfort from whoever offers it...like today, in the hug of a loving neighbor who let me cry on her shoulder. Or by donning a bracelet a long-lost middle school friend gave me at Hailey's wake because it had helped her survive some tough times.

When did we become so bundled up in our clothes and our accomplishments and our THINGS, that it became scary to feel and to need and to let others in? Hailey is showing me how to live genuinely and without pretense. And as much suffering as there is in my life right now...and there is an awful lot...all of you reading this have stepped forward and stepped up in any way you know how. So there is also more love in my life right now than there ever has been before. And for that, I can be thankful.