Monday, January 30, 2017

Honoring Her with Honesty

Today marks one month since we lost Hailey. Acknowledging those words out loud feels like I am sending a knife through my heart: there is a gaping and raw ache in the center of my chest.

Despite my conscious decision to stay positive in this blog and to celebrate my short time with Hailey, I think today I need to pay respect to her journey with some honesty...not about my suffering, but hers. It is my hope that in sharing the following, which up until now I have fiercely guarded, it may open some peoples' eyes.

These days, it feels like politics are more contentious than ever. I don't really read many of the articles people post because I'm either unsure of the credibility of the news source and/or the person has made their political agenda clear and I know what they post will only serve to further their own decided narrative. So I have wondered how we get back to being able to have honest discussions with each other...ones where we really listen with open hearts and open minds. And I think part of the answer is to just be open and honest and raw, not about our political beliefs but the personal experiences we've lived. Because as the saying goes, "walk a mile in MY shoes....". It is really easy to hold on to black and white views when the life you've led has been black and white...but there are shades of gray out there that must be considered.

And so, I am going to share the most painful details of my journey with Hailey today. I am very tempted to make a political argument, but I promise I won't. I will simply share, and let your heart guide you however it may.

The easiest way to explain Hailey's short life is to compare it to an episode of the TV show, House. When we first presented at the hospital, it was for a common virus...but Hailey quickly showed she was having a very atypical reaction to that virus. Thus began a journey through seeing doctors from every specialty at the hospital while they tried to figure out what was causing our daughter's suffering.

Hailey was stuck by needles almost every day of her life for blood work. Her veins were so small and thin, they'd often have to bring special machines up to help the nurses find them. She had IVs, central lines etc. placed multiple times...whether in her hands, feet, armpit or head. She had multiple spinal taps. Esophageal and rectal biopsies. There were nights when both my husband and I sat up all night holding our daughter because she was crying from hunger but we couldn't feed her. She had feeding tubes and drainage tubes. Her nose had to be suctioned out so often, it would bleed. She had countless Xrays, echocardiograms and EKGs. Hailey couldn't eat for weeks because whatever was going on inside of her caused her to rapidly dehydrate and poop out gushes of what looked like green water. Her diapers would be utterly soaked with it. In one night, she dropped from about 7.5 lbs to 5 lbs 13 oz. She was so emaciated, you could see every bone in her body. Her hip bones stuck out her back like a stray cat's. I've never been so terrified in my life. And at the very end of our road, she was intubated for oxygen and it was clear she was suffering.



I want you to know that I am SOBBING as I write all of this. This is a summary of the most painful part of every day and night we spent together...the parts that haunt me and break my heart and make me question WHY.

Beyond the physical suffering, I want to talk to you about the different diagnoses they considered for Hailey. When I was pregnant with her, I didn't bother with genetic testing. We'd already had a son who was born healthy and I knew that even if the baby had Downs (which is one of the major things I knew those tests looked for), we would still keep her. And not to say that genetic testing would have caught any of what happened with Hailey, because I don't' believe it would have. I say all of this to explain that there are harder roads out there than any you may have previously considered...and there are people out there, right at this very moment, walking them.

Because of Hailey's extreme reaction to a common illness, the doctors questioned her immune system. They thought it might be compromised...that she might have something akin to "the boy who lived in a bubble." If you've never heard of him, he basically lacked an immune system to the extent that if he ever got sick, he would die. Can you imagine if Hailey had been diagnosed with that? Any time my husband, son or I got sick, we would have to worry about being responsible for causing Hailey's death.

At another turn in our journey, the doctors considered whether Hailey's intestinal tract was damaged to the extent that her body could not process food, and that is why she was pooping out everything they tried to feed her in puddles of watery bile. Now, they can keep a child alive on liquid nutrition that bypasses the digestive tract and goes straight to the blood vessels, but over time it kills the liver. So if Hailey had received THAT diagnosis, I would have had to watch her like a hawk for her entire life to make sure she never put anything in her mouth. Can you imagine a life of never being able to put any food or drink in your mouth? Can you imagine your child living under those conditions until their liver began to fail...so you would have to explain to them at an age when they were old enough to understand...why they couldn't have the life other children have, and why they were going to Heaven soon? These are the thoughts and concerns that haunted my days and nights.

Now, let me tell you about all of Hailey's symptoms that were discovered while we worked through all of these medical hypotheses. As I've mentioned before, in the end, Hailey was diagnosed with an extremely rare and terminal, multisystem genetic disorder. She was missing the middle part of her brain: the corpus callosum. She was born with a small optic nerve and cataracts. Her immune system was able to mount a slow recovery to her initial illness, but it was clear it wasn't functioning normally. Same thing for her GI tract. She had a very high arched palate and difficulty swallowing. She never developed a social smile and many of her movements were stiff. It was expected that she would begin to lose her hearing, never be able to hold her head up on her own, talk or walk.

Our beautiful, sweet baby girl had no chance at the life we envisioned for her. Just the other day, my husband got choked up looking at her death certificate (which he had to provide to the Army) because there was a box on it to check if the deceased had been married. My husband had been lovingly dreading being a mess some day in the future when he would give our daughter's hand away in marriage. But it wasn't to be.

So last of all, I want to share the heartbreaking truth of Hailey's passing. It was a choice. Mine and my husband's. Now, if I hadn't brought Hailey to the hospital when I did back in October, she would have been taken by her illness many times over. But modern medicine is amazing for what it can do...which brings some people to a question of quantity of life versus quality.

Maybe my husband and I erred in always trying to stay positive when we provided people updates about Hailey. We were careful not to share photos of her that would scare people. So maybe it was our fault people were as surprised as they were when they came to see her and witnessed the state she was in. Maybe it was my fault that when I called one of my best friend's to let her know of our decision to let Hailey go, she railed against me. She lamented that I couldn't...that it was permanent...that I could never take it back...that I'd never forgive myself. That I could do this,  I'd gotten through tougher, and I could DO life with Hailey. As if I were letting her go simply to spare myself from life with a less-than-perfectly-healthy child. Nothing could be further from the truth. Letting Hailey go was the SINGLE most painful thing I have ever had to do in my ENTIRE life. I didn't let her go for ME. I let her go for HER.

My husband and I tried to make the best of two AWFUL choices. On the morning of December 19, the hospital called to let us know Hailey's lung had collapsed and they were intubating her. I asked if she was dying and they told me they'd have to see how she did over the next couple of hours. My husband and I raced to her bedside. She'd had some heart difficulties at birth, but we'd thought they'd resolved and up until that day, all of the hospital testing had maintained that to be true. But by that morning, her heart was massively failing and blood was backing up into her lung, causing it to collapse.

Hailey did okay on the intubation...it was clear she was uncomfortable and she continued to have fluid on her lungs...but her oxygen saturation and breathing rate stabilized. I cried when I found out the tube went down in between her vocal cords and we therefore wouldn't be able to hear her voice coo again. I cried when the sedative Hailey was on would start to wear off and her eyes would fly open and I could clear as day see the terror and panic in them. She didn't understand what was happening to her.

We maintained Hailey's life in this state for a week while we waited to see if she would improve. On December 23, the doctors met with us to inform us of our options. While my husband and I had given samples of our blood back before Thanksgiving to confirm whether or not Hailey did have the terminal genetic disorder they suspected, the testing took months to complete and we still didn't have answers. So we put all of her other symptoms aside and focused on what was killing her at that point: her failing heart. I didn't think the doctors would even be willing to try surgery on Hailey, but they were. They just weren't optimistic about the outcome. There was a chance she could die on the operating table, and even if she survived the surgery, they really didn't think she'd survive the recovery. They wouldn't even give us odds. Multiple things had gone haywire in her heart. (I refuse to EVER say anything went wrong with Hailey because she is my daughter and she will always be perfect to me). There weren't just nearly-impossible to fix structural issues...the heart muscle had weakened to the extent that they didn't believe it would be able to beat enough to sustain her life after surgery. The cardiologist told us she'd never witnessed a heart go bad as quickly as Hailey's had in a child so young. But it made sense if you look at the genetic disorder they thought she had. All of the babies that had it died of heart failure.

On Christmas Eve, my husband and I faced the hardest question of our lives: whether or not to risk the heart surgery, or to let Hailey go. The hardest part of it all, for me, was that prior to her heart failing, Hailey had been doing the best she'd ever done in the hospital since our admission in October. My husband and I had believed we might actually be able to bring her home by Christmas...her GI and immune systems had recovered, she'd been eating and was about to crack ten pounds in weight - the most she'd ever weighed. The second hardest part was having to make this life or death decision for our child without benefit of the genetic results.

My husband and I came to realize that whether or not our daughter did have the disorder they suspected, something genetic had happened with her on a catastrophic level: to not be able to see much of anything, to lose her hearing, to never be able to walk, talk, or smile, to have a compromised immune system and feeding and digestive difficulties, to be missing part of her brain...And the doctors had been very honest with us about what the surgery would entail...it would have been traumatic and painful for Hailey and if she survived the surgery but not the recovery, she would have been stuck on a painful machine that would circulate her blood for her until she likely passed in another way. Despite all of that, if it had just been her heart, we probably still would have risked the surgery. But looking at the total picture, and setting our own suffering aside, we realized we couldn't watch our daughter suffer anymore.

As I said before, if modern medicine weren't as amazing as it is, God would have already taken Hailey to Heaven many times over. And I wondered if, in Hailey's heart failing as dramatically as it did, both He and she weren't trying to teach us to listen. To put aside the screaming voice of our own agony and listen to and trust them. Now let me tell you something miraculous.

In the course of Hailey's stay in the hospital, there were two hymns I would play that almost always seemed to bring her comfort: How Great Thou Art and His Eye is On the Sparrow, which I've never heard sung in church, but learned as a kid from the movie Sister Act 2. On the evening of December 26, my husband and I sat in the empty and silent hospital cafeteria, which is styled like a 1950s diner. We were picking at our dinner while still discussing what was best for Hailey. And as I began to voice to my husband the sentiment I expressed above about listening to what God and Hailey might be trying to tell us...I started hearing musical notes that sounded vaguely familiar. I finished speaking and shut my mouth to better listen. And then I stared, agape, at my husband to see if he heard it too. From somewhere - I have no idea where it could have been as there was no logical explanation - His Eye Is On the Sparrow was playing. The Sister Act version. The very same one I always played with Hailey. My husband heard it too, and then we just knew.

We waited a few days to make sure we were ready. We invited all of our family and friends - anyone who wanted to - to come be with Hailey, and with us. On December 30, we baptized her in the hospital chapel and shortly thereafter, we set her free. The hospital staff told us it was the most painless and beautiful passing they'd ever seen.

We removed Hailey's breathing tube and all of our prayers were answered. My son got to hold her one last time.

I was able to cradle Hailey in my arms, with my husband's arms around us, both of us giving her all the comfort we had to offer. She let us hear her voice one last time as she sighed ever so softly and her soul was released. We were there. We FELT it. She suffered no more.



I didn't mourn the first week Hailey was gone. I held up surprisingly well. Because even though we chose to let our daughter go, and despite what some people may think, I held true to the mother's creed. I was willing to give my life for hers. My thoughts were always for her above anything else. And so as we buried her, all I could feel was relief that God had taken her home. That He was giving her something I couldn't give her on Earth: peace.

And, the day after we laid Hailey to rest, we received the results of the genetic testing. Hailey did, in fact, have the incredibly rare genetic disorder they had suspected. The official prognosis was 6 months to 3 years. We'd heard of one child who'd lived to eight. But if not for medical intervention, Hailey could have died at any time between 6 weeks and when we let her go, one week shy of her four month birthday. She inherited defective genes from both Jordan and I. Any pregnancy we have, the baby stands a 25% chance of also having this genetic syndrome. Our healthy son falls into the 75% chance of being completely fine.

If we get pregnant again, we may lose the baby one way or another. Whether we choose to do the genetic testing at ten weeks and decide to spare another baby what we watched Hailey go through...or whether we give birth to the baby and support him or her through their short life. It is a conversation for a different day. I just pray every night God doesn't ever ask me to have to make that decision. The decision we made for Hailey was hard enough.

So, I know everyone's story is different. This is ours. I just want you to know it and consider it. And to understand that it is hard to know what you would truly do until you are faced with such an awful situation. I pray, pray, pray that you never are. I pray that you don't have to be in order to exhibit understanding or at least compassion.

And I know my pain is still fresh and raw, but please know that sometimes when you post blanket statements or articles about "murdered babies" and abortions, you are causing someone who is already in an immense amount of pain, even more pain.

This blog --- outside of today's post --- is a positive blog because I WANT it to be. I FIGHT for it to be. Because that is how I want to cherish my time with her.

But today, I needed to stick up for both of us. As much as Hailey taught me, she had to suffer to do so. I don't understand it, but I'm not meant to. I trust.

If you think for one moment that I am not suffering the depths of a mother's grief, you are wrong, wrong, WRONG.

But please know this. My grief is my own because of what I have lost, but I do NOT for ONE SECOND, regret the decision I made for Hailey and what she has gained. We both know God's eye is on the sparrow, and she will always be MY little sparrow.


From "His Eye Is On the Sparrow"

Why should I feel discouraged
Why should the shadows come
Why should my heart feel lonely
And long for heaven and home

When Jesus is my portion
A constant friend is he
His eye is on the sparrow
And I know he watches over me
His eye is on the sparrow
And I know he watches me

Thursday, January 26, 2017

Let Thankfulness Be Your Guide

When something goes wrong, it is easy to focus on the negative outcome. Instead, I am wading through my grief by holding on to beacons of thankfulness. If you have the patience to read this post, I have an important point to make at the end.

I am thankful for the support of our family: they dropped everything to travel here to Kansas to help hold the fort at our house while I spent months at the hospital with Hailey. They cooked, they cleaned, they helped take care of our son and brought him to visit us in the hospital. They spent nights with me both at Ronald McDonald House and by Hailey's bedside when my husband couldn't come down.

I am thankful for our friends and neighbors: people contributed generous amounts of money so our house could be professionally cleaned, multiple times. One of my closest friends even got my son enrolled in daycare here so we didn't have to worry about finding care for him while we went to the hospital. Folks have also cooked an uncountable number of meals for us, and have helped stock our groceries. They've had meals delivered to us in the hospital, too. Friends from further away have sent gift cards and freezer meals. With their support, I never once had to worry about anything but the health of my daughter. We didn't know she was going to pass on, but our friends and neighbors gave me a gift for which words can never truly express just how thankful I am: they gave me the gift of time and focus with my child for the four months she was alive. And now they remain here, to laugh and cry with me and make sure I get out of the house.

I am thankful for the hospital staff, many of whom we remain friends with. To the nurses who not only cared so diligently for our daughter but were also my shoulder to cry on...Shelly, Debbie, Kristin, Sarah, Abby and all the others...you are angels sent from above. You do the God's honest work in taking care of our sick children, in helping us parents navigate our scariest days, and I am so thankful people like you exist. You are some of the folks who spent the most time with Hailey and knew her best, and you give me peace, knowing you won't forget her. You have all made me want to be a better person and to do more to help others.

I am also thankful for Teesha, the NICU's parent-to-parent relationship coordinator. Her calm voice, easy-going demeanor and gentle spirit were so comforting to me, and have inspired me to want to help other parents with NICU babies. I'm thinking maybe it is time for me to go get that Masters in Social Work!

I am thankful for our nurse practitioner, Christy. As soon as I met her, we clicked. She feels like a kindred spirit and from day one, I have trusted her guidance on medical decisions for Hailey as much as I trusted my own instinct.

I am thankful for all of the doctors who treated Hailey, most especially Dr. Tim, Dr. Petrikin and Dr. Nyp. You are wonderful and kind men who always wanted the best for us. I know you spent tireless hours thinking about and discussing her case, and am so thankful we were able to determine a diagnosis. I am thankful to all of your families, too, for sharing so much of your time with those of us in the hospital.

I am thankful we got to spend a month at home with Hailey, under the illusion we were a happy family of four. I will cherish those memories for all of my life and then some. Many NICU babies don't ever get a single day at home.

I am thankful that places like Ronald McDonald House exist to support families in their time of need. I'm thankful for the food and housing they provided us, the friends we made there and keep in touch with, and those who volunteer their time there. It was a humbling experience to be on the receiving end of charity!

I look with new eyes of thankfulness toward my husband's job. For a long time, I've dreaded the thought of him having to deploy. I've even resented it, because he and many others have already done, in my eyes, their fair share of deployment time. BUT, my husband's job is what provided us with health insurance coverage enough to pay all of Hailey's medical bills. So when he deploys again this year, I will strive to maintain this attitude of gratitude.

I am also thankful to my husband's instructors and current chain of command. He is involved in a very rigorous educational program right now, but they have been so very understanding of everything we have been going through and granted my husband as much time as he needed with our daughter. Again, we never knew what a precious gift that would turn out to be!

I am thankful for the generosity of the hospital's donors. Because of them, upon Hailey's passing, we were informed that no matter what insurance covered (or didn't!), we would never receive a bill for Hailey's care. I believe healthcare is a RIGHT and not a privilege meant only for those who can afford it. NO parent should EVER have to worry about the cost of saving their child's life. EVER.

I am thankful for my son's bright spirit and happy demeanor. Seeing what a wonderful big brother he was to Hailey helps me to see past the immediacy of my grief and makes me want to give that back to him again some day.

I am thankful to my husband for the wonderful relationship we have. When it comes to making end-of-life decisions for your child, some parents disagree about what to do and it is added tension on top of tension. Even though he and I are different in so many ways, we were always on the same page for Hailey and I am SO thankful for that. I am also thankful he could be emotionally strong for me in the mornings, when I was at my weakest, and I was able to be strong enough in the evenings for him after the days had taken their toll. I am thankful we are growing together in our grief, and not apart.

I am thankful for the owner of the Crimson Petal florist in Massachusetts, who designed the most beautiful flowers for Hailey's wake and funeral and only charged us a fraction of the cost. I am thankful to the owner of the barber shop on Main Street, who cut my son's hair for free when she found out we were getting tidied up for Hailey's services. I'm thankful to the funeral director, who took such good care of us across the board, and to the cemetery superintendent, who refused to charge us a thing. I am thankful to my friend Megan, who has the most beautiful singing voice and went to our other friend's recording studio in Nashville to record hymns for Hailey's funeral.

I am thankful for my dog's loving companionship, especially after having to put our cat to rest the day after we brought Hailey home from being born.

I am thankful to have known, for even just a fraction of time, the joy of having a daughter (in addition to our wonderful son).

I am thankful for both the close friends, the distant ones, the acquaintances and classmates from years ago, the neighbors, the immediate and extended family and their friends as well, who all came out to help celebrate Hailey's life and/or sent us cards, flowers, and gifts and made charitable donations in Hailey's memory.

I am thankful for the new people God is putting in my life every day who bring me comfort and joy. When I left to house hunt in Georgia just a few days after burying Hailey, I found comfort in the realtor we bought our home through. We share certain life experiences, and I look forward to building our new friendship. I also look forward to other new Army friends we have already connected with in our next hometown!

I am thankful we have my brother's wedding to look forward to in March. I love my future sister-in-law and all of her family that I have had the pleasure to meet thus far. It is wonderful to have the family grow bigger!

I am thankful, as I will say time and again, for every one of you who read this blog and help me to know my daughter and my time with her mean something. That our suffering serves a purpose.

I am thankful for all of the ways in which the Lord lets me feel both His and my daughter's presence.

I am thankful for my grief because in this suffering, I will better appreciate joy. If losing my daughter does serve a purpose, a major part of that is gaining a better relationship with the Lord, and with all of you.

I know to many, the political and social climate in our country is scary right now. I get that. And maybe my list of thankfulness is tedious to read through (yet probably still isn't half complete). But I want everyone to know there is good in this world. Most people WANT to be kind, if given the opportunity. Sometimes life serves up the opportunity, like in our case with the passing of our daughter. But you can, too. Give people every opportunity to be kind and maybe sometimes you will be disappointed, but I think more often than not, you will find yourself pleasantly surprised. With love.

Sunday, January 22, 2017

Why NOT Me?

In the process of grieving, it is important to recognize both healthy and unhealthy thoughts will enter your mind. At times you may even feel ashamed of what occurs to you...for me, one such instance meant wondering about whether or not to have more children when I was in the midst of dealing with our current child's terminal illness. But don't be afraid of these thoughts - they occur to all of us in one form or another. I took comfort that when they did, my husband and I have a trusting enough relationship that we could admit them to each other without fear of judgment or reprisal.

That being said, grief can take you to some dark places, and can drown you at times if you let it. So embrace what comes, but also take a moment to realize for yourself what are healthy thoughts and which ones aren't productive. There are some questions you can ask yourself over, and over, and over again and they just won't ever lead anywhere definitive or good. "What if...?" is one example, because there is no such thing as "what if", only "what is."

Perhaps the foremost question we all ask ourselves when something bad happens is "Why me?" How, as a society, did this become our frame of reference? Was it because of the much televised crowbar attack on Nancy Kerrigan in the mid '90s, when we all saw her on camera, clutching her damaged knee and sobbing, "Why me?"

I cannot deny I've asked myself this question in the past, but I now realize the error in my thinking. Asking "why me?" seems to connote that I've done something wrong, and makes me feel guilty or worthy of punishment. Was I not kind enough? Pretty enough? Smart enough? You name it. But the truth is, and what Hailey taught me, is that we can just as easily ask, "Why not me?"

"Why not me?" is a healthier question, on so many levels. We remove the conceit of assuming we are any better, or any more or less deserving than anyone else. It acknowledges, in a way, that there may very well be no rhyme or reason to what has happened. It may sound entitled when used with a tone of deserving, but is SO humbling when it comes from a place of suffering.

When it became clearer and clearer that Hailey was not going to survive her illness, I sobbed. I asked not "Why me?", but "Why her?" Are babies not the most pure among all of us? There is no way Hailey could have done anything to deserve what she got, and I sobbed and pleaded that I didn't want whatever lessons *I* had to learn to be at *her* expense. But I came to realize that God is in control, and that is something for Him - not me - to decide.

Hailey passed away due to a multisystem genetic disorder so rare that it was only named in the 1980s and modern medicine has only written about 50 cases worldwide. 50 cases. Do you know how many people there are in the world? 7 BILLION --- I had to look it up. With that kind of luck, my husband and I joked that maybe we should play the lottery.

But you know what? Why not us? We aren't better (or hopefully any worse) than most other folks. Knowing Hailey had something SO rare almost gave me some comfort...it somehow made me feel like with such odds, this must truly be meant to be our path. And so I am doing everything I can to embrace it, and to share it, because I believe God has a purpose in all things. And each time someone reads this blog and writes me a note or leaves me a comment on my Facebook wall, it is the best thing you could ever do for me. Because in doing so, you are validating Hailey's life more than any condolence ever could (as sweet and kind as those are). You are soothing this mama's aching heart and soul. Thank you, with love.


Wednesday, January 18, 2017

How Will I Know Her?

I believe in guardian angels, or that our loved ones who have gone before us to Heaven keep a watchful eye over those of us still here on Earth. That can be a daunting prospect when you are a kid and you wonder whether they truly see EVERYTHING!

I also believe in "signs" from our loved ones. Don't get me wrong --- I don't have any special talents to see or hear spirits like Jennifer Love Hewitt on that old show the Ghost Whisperer, but I like to believe that if we pay attention, we will know those we love are still with us. Notice how I said I "LIKE" to believe? It is a conscious choice on my part, not born out of logic but of love and faith. Because if you get down to it, maybe it is similar to reading your horoscope...did the prediction become true because it was meant to, or because you looked for ways to make it so?

For the past week, I have had trouble falling asleep because each night, I worried about how I would know our Hailey. She was so young...she passed days before her four month birthday. We didn't have many shared experiences for me to feel confident I would recognize when she was reaching out to me.

When my aunt and godmother lost her battle with breast cancer a number of years ago, I knew clear as day when she was with me, and I still do. To elaborate, there was a period of time when I was a little girl that my aunt came to live with us. She was my Mom's younger sister, and she stayed in our spare bedroom when she first moved back to Massachusetts from Florida. Most mornings, I would creep into her room to wake her up so we could watch PeeWee's Playhouse together. She always wore silk PJ pants and she would stretch her long legs out off the end of the bed to make a slide for me to ride down as we giggled the early morning away.

Many years later, on the occasion of her passing, I spent a lot of time with her two sons and tried my best to hold myself together. But the night before I was to return to work, all my sorrow came tumbling out of me and I cried endlessly until I fell asleep. The next morning, my heartache clung to me like a bad hangover and I struggled to wake up and get ready to head into the office. I reached for the TV remote and clicked on the news in the hopes that it would help me prepare for the day.

Now as many of you may remember, PeeWee and his Playhouse went off the air and out of the public eye for a couple of decades due to a public (and gross!) indiscretion on his part. But that morning, the first news story I heard was about PeeWee. If I remember correctly, he was emerging back into the public eye and trying to make a stage version of his show. I felt as though my aunt was sending me a sign, and I felt uplifted and hopeful enough to get out of bed and move on with my life.

And I was not the only one who received signs from my aunt...there are others in the family who could tell you stories as well. For one, the first spring after my aunt passed, the bleeding heart flower bloomed all over her husband's house when it had never grown there before. I mention this in particular because while Hailey was in the hospital, whenever I came and went, I would have to walk down a long corridor filled with paintings of kids and photographs of flowers. And you better believe that one of the frames on display was of the bleeding heart flower. Every single time I passed it, I said a prayer to my aunt and felt as though she was with me.

But how would I know our Hailey? Yesterday was one of my first full days back home after traveling to lay Hailey to rest and then jetting off to house hunt in our next duty station and attend my future sister-in-law's wedding shower. I dropped our two-year old off at daycare, came back to a quiet house and wondered what to do next. I've had so little time to myself over these past few months...I decided to brew myself a cup of coffee and watch an action movie that was guaranteed not to further mess with any of my heart strings.

I started up the DVD player before I turned the TV on so I wouldn't have to listen to all of the yapping that goes on before the movie actually plays. Once I had my coffee in hand and was settled in comfortably on the couch with our dog and a cozy blanket, I hit the TV "on" button and was struck dumb by what I saw.

To give a quick moment of backstory, Halloween was the first of a handful of holidays Hailey spent in the hospital during her short life. And on that day, I left her bedside for a few minutes to pop down to the cafeteria to get something to eat. When I came back, her tiny, swaddled body was draped with a Wonder Woman cape. Volunteers had made superhero capes for all the sick babies, and it brought tears to my eyes. Our daughter was indeed fighting with all her might, and that superhero cape is one of the few keepsakes I took home from the hospital by which to remember her and her strength of spirit.

When I turned the TV on yesterday, the first thing I saw in a size that took up the entirety of our screen was the Wonder Woman logo, followed by a clip of the upcoming movie. I realized I'd actually turned the movie on in the smack dab middle of the trailer, but that was the moment in which the logo emblazoned across the screen. I choose to believe the timing was not luck, but Hailey bringing me peace just as my aunt did when I came face-to-face with figuring out my new normal.

And if that weren't enough, after I finished watching my movie, I decided to go upstairs to take a shower. I purloined our Amazon radio thing, Alexa, from the kitchen and brought her up with me so I could listen to music while I bathed. I didn't like the idea of too much silence. I turned the water as hot as I could stand it and went about my business. It wasn't until I turned the water off and began to step out of the shower that the song Hailey was born to began playing on the radio. As if I could have ignored the first signal she sent me, she provided another. I felt such amazing comfort.

Despite our short time together, and our limited cache of shared experiences, I have faith that my daughter will always be with me. She was there for me yesterday, to reveal her presence and bring me peace. I hope I will always be open enough and mindful enough as we go through what can be hectic days, months and years, to see her and to hear her and to feel her with me.

I need to remember this moment. This quiet space. And try to maintain it moving forward with deep breaths and a centeredness I may sometimes fail at, but know is possible. Thank you, Hailey Grace.


Monday, January 16, 2017

What Makes a Soul

One of the biggest and best lessons Hailey taught me is that of what makes a soul -- what makes us human, and how we may go on to exist after we pass from this world. Never have I believed more in God, Heaven and an after life.

Before cradling Hailey in my arms as she passed, I'd never been in the room when someone died. I was present when we had to put our family dog down, and sadly, we had to put my cat down the day after we returned home from giving birth to Hailey. Those were very, very sad and hard moments, but not the same as when we buried my grandfather or my aunt.

I have a long history of sobbing when people or animals pass away...it dates back to Old Yeller (who doesn't cry at that?!), Charlotte's Web, and Bambi. It is why I like action movies, because usually only the bad guys die and it isn't too upsetting. In real life, when the people I loved passed away and I attended their wakes and funerals, I floated adrift on a sea of memories of happier times. The thought of how much I was losing clouded my vision and acceptance of what my loved ones were gaining: everlasting peace and freedom from the health concerns that shackled their bodies on Earth.

With Hailey, it was different: perhaps because she was so young and I didn't have a lifetime of memories clouding my vision. Perhaps because I sat in the hospital with her all day, every day, for months. I saw every needle prick, every test, every struggle, every discomfort. By the time it became clear we needed to let Hailey go, I did not mourn. Mourning is an emotion unto ourselves, for what we are losing. My first and predominant emotion was for my child, and it was -- and still is -- relief. Relief that she would no longer have to suffer or fight so hard at a losing battle. Relief that she will know a better life in Heaven and with Our Father.

I know that during her brief life on earth, Hailey knew love. She knew love to the point that in her final days, so many people held her and packed in a lifetime of love on her that she didn't need as much pain medication. And in Heaven, she will finally know a peace unlike anything we could give her here.

When it came time to remove Hailey from life support, it took only short minutes before we heard her delicate voice as she let out the softest and sweetest of sighs. I watched as the spirit left her eyes...it took a few more minutes for her body to officially shut down, but her spirit had already gone and I knew that well. I believe she felt the relief we hoped to give her, and was thankful.

In the following days, we traveled back to my home state of Massachusetts to lay Hailey to rest between my grandfather and aunt. As the wake approached, I felt nervous about how I would feel seeing Hailey again. Baptizing her and letting her go as we did in the hospital chapel had been so perfect for me, and I didn't imagine anything could be more gentle or perfect. And while perhaps most people would not hold an open-casket wake for a baby, I felt strongly that I wanted everyone to see and to know our precious daughter.

The afternoon of the wake, my husband, son and I arrived early to have a private moment with Hailey. To my astonishment, it did not pain me to see her at all. She looked beautiful, laid out in her intricate christening gown and surrounded by colorful blossoms. But I felt as though I was looking at the cocoon of a butterfly after it had emerged and fluttered away. This was not Hailey, but her shell. The daughter I'd known, loved, agonized over and beseeched God for was not there. Even our two-year-old son recognized it. My husband and I had not spoken to him in finite terms about what had happened to his baby sister. He seems too young to truly understand it much, so really, we'd just told him Hailey had gone to the stars. But as I held him in my arms as the priest said a prayer over Hailey, my son looked at Hailey and said quite simply, "Hailey gone."

A young child's eyes are not clouded by mourning. They can see what we as adults often cannot. And in that space and time, Hailey gave me the gift of pulling back the veil shrouding my eyes. For the first time and unlike ever before, I understood what makes us human. What our soul is. That it noticeably leaves. And if it can be here, and I can feel it leave, then it follows that it goes somewhere. I believe like never before in the Grace of Heaven. I believe in our Hailey Grace.

Monday, January 9, 2017

"From the Borderline"

I originally thought to name this blog something to do with the term "Borderline" because as we navigated a maze of inconclusive medical tests, my husband nicknamed Hailey our "borderline baby." (After some quick Googling, I realized it wouldn't be an adequate blog name because it is most closely associated with Borderline Personality Disorder).

I first brought Hailey to the children's hospital emergency room in October because she threw up a funny color: it was a neon yellowish green and mucousy. The first time she did it, I was concerned but she had been sounding congested and I figured throwing up was the only way a baby could pass mucous. When she threw up a second time within that hour, I called the pediatrician and they told me to get to the hospital immediately.

In the ER, they checked Hailey over, made sure her intestines hadn't twisted loose, checked on a few other things, and when she was able to keep some pedialyte down, they let us go home. But four hours later, I was bringing Hailey back to the hospital for the same continued symptoms, but this time she also had a fever. Thus began our journey through varying and evolving symptoms, slight improvements and then major setbacks.

I tried to keep my Facebook updates about Hailey top-line because most of all, I wanted to respect her medical privacy. I thought she would get better and I didn't want her to someday feel embarrassed about all I might have shared. I also didn't want to overwhelm people with medical jargon, depress them, or make their heads spin with the rapid ups and downs that are common in the NICU. But my husband and I decided we did want to share at least some of what was going on because we badly desired everyone's prayers. Knowing that so many people around the country and world were praying for Hailey is what helped carry us through some of our darkest moments. In times such as these, there are some family and friends you expect to hear from, and then there are other people who crawl out of the wood work to stand tall for you, and you are touched by the unexpectedness of it all.

I think the one major drawback to how we chose to update folks about Hailey is that in an effort to stay positive and respect her privacy, people perhaps didn't understand how dire her circumstances were and what kind of news my husband and I were getting inundated by at the hospital on a daily basis. Our closest family members knew more than most, and with all the ups and downs, wondered and worried if we were receiving the best medical care possible for Hailey.

Without going into too much detail, the doctors explained all of Hailey's testing with an analogy that first they look for ponies and if that fails, then they look for zebras. So despite our families' concerns, a long NICU stay is not uncommon with a newborn. After all, they have no way to communicate their symptoms and struggles, so it can all be an (educated) guessing game.

And Hailey passed all of the standard tests. For many of them, she was on the borderline of the "normal" range, but she was okay enough that the doctors weren't overtly concerned. Hence my husband's teasing with the nickname "borderline baby." A parade of doctors from every specialty in the hospital came to examine Hailey and they all felt that whatever was afflicting her was not within their realm. At first, I felt so relieved that they couldn't find anything. But then Hailey continued to worsen and we went from looking for horses to the more exotic zebras. With every examination and new test, I grew more and more anxious. It started to feel like a game of odds, and I feared eventually we were bound to lose.

Hailey turned out to be a zebra indeed. My beautiful, sweet zebra. Shortly before Thanksgiving, my husband, Hailey and I all had our blood drawn for genetic testing, which we were told could take three to four months to return results because of how complicated and time-intensive the process is.

Hailey was eventually diagnosed with an incredibly rare, multi-system and terminal genetic disorder. Over the duration of our hospital stay and as more symptoms revealed themselves, doctors were able to put the pieces together and presented us with their suspicions. However, we didn't formally receive confirmation of the diagnosis from the genetic testing until eight days after her death.

If my husband and I ever win the lottery, I will invest a large some of money into improving the timeliness of genetic testing. NO parent should EVER have to wait MONTHS to find out if their child will live or die.

In our case, Hailey revealed her path to us before the tests did. And in the between, she showed me so much more. She taught me patience and presence and the need to reach for a more sanguine outlook on life. She taught me how to live on the borderline when I'd always feared it. But that delves into what will have to be my next post. For now, I need to pack for a trip to house-hunt at our next duty station and attend my future sister-in-law's wedding shower. Never a dull moment, but in this moment of life, I appreciate the opportunity to stay busy. With love.


Saturday, January 7, 2017

What's in a Name?

My husband thought my first blog post should explain how I came up with the name for this blog, "My Preche." I promised him I'd write about it in my next entry.

I had a hard time coming up with a blog name that fit Hailey and I. I brainstormed during the day and when I couldn't sleep at night. I thought about how my husband and I would always tell people that as rough and tumble as our son is, Hailey was just as sweet and delicate. With my son, we went past his due date and he was born at 8 lbs 6 oz. When Hailey came along, she arrived three weeks early, weighing a dainty 6 lbs 13 oz.

I never dreamt I could give birth to a child that looked like Hailey: as dark as my hair is, hers was strawberry blonde. My eyes are mostly brown, while hers were a shade of blue that told you they'd stay blue for life. Against my tanned skin, she was all peaches and cream. She'd snuggle down into my arms with her legs crossed at the ankle and if I didn't give her one of my fingers to hold on to, she would fold her hands one on top of the other. She was our little lady, and we perfectly described her as "precious."

As the days passed, I'd make more and more idle chatter with Hailey while changing her many dirty diapers. Don't ask me why, but I started shortening "my precious one" (and yes, I know that sounds like Golum from Lord of the Rings talking about his evil ring, and no, Hailey in no way bore any resemblance to that creepy critter!). I started calling her my "preciousness" and then, "preshy preciousness" or "presh."

I thought "my preshy" might be an adequate name for the blog I wanted to start, and ran it by the hubs. His first question was how I would spell it, which I thought about for a second. "Well, if I'm just going with American slang, I'd spell it p-r-e-s-h-y," I replied. "But I could go fancy and spell it in the French style as p-r-e-c-h-e."

I liked the idea of sounding a little more high-brow, and my next step was to Google "preche" to see if it really did mean anything in French or if it was just my own silly creation. When the results and a translation popped up, I was speechless. In French, preche means "sermon." And that is just what Hailey was to me: my own personal sermon. A sermon I now want to share with all of you.

Many of the things I write about in this blog may not be unique...how little control we actually have in life, or to not take a single day for granted, or to always be kind...but what IS unique is my own journey with Hailey to reaching these maxims in such a real and raw way. I hope you will bear with me.

While I don't plan to necessarily write about my journey with Hailey in a chronological way, I will defer to my husband's logical nature and at least spend my next post further explaining why I'm posting under the handle of "From the Borderline", and how life is so rarely black and white.

With love and gratitude for your time to read this.

Wednesday, January 4, 2017

Navigating the Unthinkable

When you are a kid, you think you are invincible. When you finally earn your driver's license, your parents try to hammer home that, in fact, you are not. Bad things can happen if you aren't careful, they would warn. Sometimes I'd become frustrated at my parents' apparent lack of faith in my driving. To this day, I remember my mother's favorite line when I'd grab the keys to leave the house: "It's not just you I worry about. Watch out for the other guy."

As you grow out of your teen aged years and through your twenties, you experience life. You realize your parents were right and that bad things can happen, even to good people. You learn to be more careful, or at the least, you try to anticipate some of life's sharp curves while you go on new adventures. And that's just how I'd describe having kids: it is an adventure.

When my husband and I discovered we were expecting our first child, we felt pure joy. We'd conceived without trouble, and all of our doctor appointments went smoothly. We experienced a bit of nervousness during the wait for the standard blood test to look for outlying conditions such as Downs, but everything came back clear. In July 2014, I gave birth to a healthy baby boy. 

Our son was about 18-months old when we decided we felt ready to expand our family. That might be fast for some folks, but my husband is a twin and loved the closeness he felt growing up with both his twin brother and their two-years elder brother. We had always known we wanted our children to be close in age, but this time we were surprised to find it took us longer to conceive. I was on the verge of going to the doctor to make sure everything was okay when I discovered we had successfully created a life once again.

This being my second pregnancy and with a healthy toddler at home, I didn't feel the same concerns I did with my first pregnancy. I can't explain why. Certainly, as more of my friends had children, I became much more aware of infertility struggles, miscarriages and heartbreaking decisions to terminate wanted pregnancies due to fatal fetal illnesses and risks to the mother's health. 

Beyond that, this pregnancy was different from my first. It was harder, but that wasn't necessarily saying much considering that my first pregnancy was such a breeze. The second time around, I experienced everything you hear women complain about: the nausea, the heartburn, and oh my gosh, the SWELLING! All while trying to chase our toddler around through 100-degree summer days. He loves to be outside all day, just like his Daddy. But the day I found out we were expecting a girl made it all worth it: I will cherish it as one of the happiest days of my life. I remain so close with my own mother, and after witnessing what a carbon copy my son is of my husband, I desperately wanted that with a daughter. 

On Labor Day, I gave birth to our daughter. It was a repeat c-section, and unlike our son, she cried the moment they pulled her out of me. I sighed, laughed with joy, and said to my husband, "Oh thank God. She's healthy!" Little did we know what laid in store for us. 

Tomorrow is January 5, 2017. It is our daughter's four-month birthday, and it is also the occasion of her wake. Her funeral will be held the following day. You see, I cradled our precious Hailey Grace in my arms as she passed from this world on December 30, 2016.

We discovered firsthand what our parents try to teach us as teens. We are not invincible. Bad things happen to good people...sometimes no matter how careful they are. We are experiencing every parents' worst nightmare: the death of a child. People say they can't imagine what we are going through, and I don't want them to have to. So I'm starting this blog. But if you think this is going to be a sad blog to lament the passing of my cherished child or begrudge other folks their still happy, smiling, healthy children, you are wrong. 

Hailey Grace is a gift to the world. God put her on this Earth for a reason, to teach us something. While I cried to the doctors at the hospital that I never wanted whatever I needed to learn to be at her expense, she did - in fact - teach me so very much in her short time here. THAT is what I want to share with the world. I hope you will let me share with you.