Do you ever have one of those moments when you are really angry or hurt (often both) about something and you are ranting or crying (or both) to someone and you say something petty? And you know it is petty when you say it...like bemoaning why we lost OUR baby when there were plenty of other babies in the NICU whose parents never came to visit or flat out abandoned them because the health challenges were too much...and then whoever is listening to you totally calls you on it. Like when my husband reminded me that we wouldn't wish this on anyone --- which is true --- but then you just cry harder because not only are you angry and hurt but then you are also petty and someone else now knows it and you feel even worse for letting the ugly out.
I'm not going to lie folks, this past week has been really, really hard for me. I cried so much before Hailey passed. And then after, I just felt so relieved for her that I didn't cry much at all and I could talk about her easily and carry on with my daily chores. But this week, I have been an unmitigated disaster. Yesterday morning, I cried when I dropped off the rest of my breastmilk to another military spouse who could make use of it. She'd never met me before but kindly gave me a hug and let me know it was okay.
Then I went shopping. I've been so angry at my body this week. I think when people experience stress, they either eat their feelings or their feelings starve them. I usually fall into the former camp, but watching Hailey suffer took away my appetite. In the hospital, if I even smelled food, I became nauseous. I lost a lot of weight and was too dizzy and weak to exercise, which would have been a healthy way to deal with my stress. I knew I needed to eat. I wasn't trying to be difficult. I just couldn't. So, I went to see the doctor about going on anti-anxiety or anti-depression medicine so I'd be able to at least eat.
I stayed on the medication for about 45 days, and it did help me a lot. I was able to eat again. I survived burying our daughter, and I weaned myself off the medicine. And I instantly gained back six or 7 lbs. Just enough to make me feel like a 20 lb sausage crammed into a 10 lb casing every time I tried to put on my normal pants. Not enough to keep maternity pants up, though, and psychologically - I can't go back to wearing that stuff. Every time I caught sight of my body in the mirror this week, I raged. Not because my body isn't in the great shape it was before I had kids...but because my body looks like I had a baby and I don't have my baby. It is just another painful reminder of all that I have lost...just like the empty nursery I am sitting across from right now as I write this.
So I went shopping, and bought some leggings and baggy tops and looser jeans. The cashier made small talk with me as I checked out...inevitably the question about kids came up...and I didn't know what to say and I just started tearing up. I whispered that my daughter passed not quite two months ago. The cashier felt bad, and told me everything happens for a reason. I believe that, and she was well intentioned, but in that moment, it hurt. Everything has hurt this week.
Grief is cruel in the way it evolves over time to haunt us in new ways. I'd been doing so well. Writing on here, taking comfort in friends and family, hoarding paint chips as I consider how to decorate our new house, and filling out my grad school applications so I can go back and get my Masters in Social Work like Hailey has inspired me to do. And then I just crashed.
A few weeks ago, a friend showed me an illustration of how we think a journey through grief will be rather like a straight line when in reality, it is kind of a crazy scribble that looks rather like a tumbleweed. This is so true. On my shopping trip yesterday, I was also looking for cute shoes for my son. I popped in to Old Navy and realized the last time I'd been shopping (in there or really anywhere else) had been before Hailey died. I'd been shopping for her. I inwardly raged - really on the borderline of hysteria - at all the cute girl clothes before me. And yet the store didn't have one dang pair of shoes in my son's size. I turned around and walked back to my car before I lost it for the third time in as many hours.
I worry about trying to have another baby. I worry that I will never have another daughter and I will always wonder what life would have been like with Hailey and that I will never feel whole again. I love God and trust in Him but wonder about how much he can ask some of us to take. I think of that guy who wrote the hymn It Is Well With My Soul after losing his ENTIRE family in a shipwreck. I try to hold on to his perspective and reach for the books on Heaven that some friends and family have so kindly sent to me.
None of this is to say that everything else I've written on this blog isn't true. I still know it is pointless to linger in the "why me?" question. It doesn't mean it doesn't still pop in to my mind. And, I may not be okay today. I might be worse tomorrow. But I know one of these days soon, I will wake up and feel better than I do right now. And in the mean time, I know it is important to embrace what I'm feeling and to let sorrow have its moment.
Thursday, February 23, 2017
Monday, February 20, 2017
Soaring and Crashing
I've always liked to help others whenever I can, whether through donating my time, money or both. Even when I am feeling awful, I find that if I can help someone else, it generally makes me feel better. So in this season of mourning Hailey, I've enjoyed being of service to others. Helping them helps me.
This past Thursday evening, my neighbor needed to go to the emergency room. Her husband held the fort with their children while I took her and believe it or not, we were all excited when she got discharged after only about SIX hours in the hospital. As I drove us home shortly after midnight, we came across a bad car accident and stopped to help. It turned out the driver had totaled his car and fractured his skull among other things, but because we helped him, it wasn't as bad as it could have been. His fiance called us angels.
On Friday, I accompanied another neighbor on an eight hour drive to Colorado, where she house hunted for her family since they will be moving there in a few months. It was a fun adventure, and I enjoyed some beautiful scenery and deep conversation with a great friend. She treated me normally, but also let me talk about Hailey and didn't make a big deal about it if and when my memories turned tearful. I was so thankful for that.
The truth is, the first few weeks after losing Hailey were easier. Her suffering still sat at the forefront of my mind and so my predominant feeling was relief for my daughter. But now, as my recollections of the endless needle pricks, the difficult feedings, the massive water-loss diapers and her overall suffering subside a bit, I think back to the few happy memories I have of our time together at home when everything was okay. I look back at the photos on my phone of when Hailey was healthy or at least looked peaceful. And my heart hurts. It hurts so damn bad. My throat tightens up as if I've swallowed a golf ball and the tears race to my eyes. Why. Why. Why. Why our daughter. Why us. Why does this hurt so damn bad. I ache. I cry. I sit on my front porch and draw comfort from another dear friend who sadly knows a grief similar to mine.
And then the sun sets and I take my son inside for a bath and bedtime. He is two and a half, and since Hailey passed, I've been teaching him to say his prayers. I hadn't been sure how much he was absorbing...this is a new routine for him and he usually just mimics what I say for him. But tonight, I decided to ask him to let me hear his prayers. And so he steepled his hands together, and softly and sweetly said (without any further instruction from me), "Dear God and Hailey-in-the-Stars, Daddy is home and I love Mommy. Amen."
How can your heart soar and crash at the same time? I don't know. But that is exactly what happened.
This past Thursday evening, my neighbor needed to go to the emergency room. Her husband held the fort with their children while I took her and believe it or not, we were all excited when she got discharged after only about SIX hours in the hospital. As I drove us home shortly after midnight, we came across a bad car accident and stopped to help. It turned out the driver had totaled his car and fractured his skull among other things, but because we helped him, it wasn't as bad as it could have been. His fiance called us angels.
On Friday, I accompanied another neighbor on an eight hour drive to Colorado, where she house hunted for her family since they will be moving there in a few months. It was a fun adventure, and I enjoyed some beautiful scenery and deep conversation with a great friend. She treated me normally, but also let me talk about Hailey and didn't make a big deal about it if and when my memories turned tearful. I was so thankful for that.
The truth is, the first few weeks after losing Hailey were easier. Her suffering still sat at the forefront of my mind and so my predominant feeling was relief for my daughter. But now, as my recollections of the endless needle pricks, the difficult feedings, the massive water-loss diapers and her overall suffering subside a bit, I think back to the few happy memories I have of our time together at home when everything was okay. I look back at the photos on my phone of when Hailey was healthy or at least looked peaceful. And my heart hurts. It hurts so damn bad. My throat tightens up as if I've swallowed a golf ball and the tears race to my eyes. Why. Why. Why. Why our daughter. Why us. Why does this hurt so damn bad. I ache. I cry. I sit on my front porch and draw comfort from another dear friend who sadly knows a grief similar to mine.
And then the sun sets and I take my son inside for a bath and bedtime. He is two and a half, and since Hailey passed, I've been teaching him to say his prayers. I hadn't been sure how much he was absorbing...this is a new routine for him and he usually just mimics what I say for him. But tonight, I decided to ask him to let me hear his prayers. And so he steepled his hands together, and softly and sweetly said (without any further instruction from me), "Dear God and Hailey-in-the-Stars, Daddy is home and I love Mommy. Amen."
How can your heart soar and crash at the same time? I don't know. But that is exactly what happened.
Wednesday, February 15, 2017
Controlling the Narrative
My public relations friends should enjoy this post, if they weren't already sucked in by the title. After all, our entire existence as professionals depends on helping our clients "control the narrative." Even when it was bad news, we raced to get out ahead of it and put our own spin on it. For example, a long time ago, when my client and its chief competitor were the only two left in the market awaiting acquisition, we found out the competition had won that race. I went out to all of the media sources who were covering the story and made sure we were included, saying the acquisition of our competitor further validated the market, even though internally, we knew this did not mean good things for our client's chances.
The above is an anecdote from my working days, but you should be able to recognize --- especially in the age of social media --- how much time we all spend trying to control our personal narratives. Obviously, we all want to look good. We want to look like we are leading our best lives. It is probably a big part of why, when someone is going through a rough patch in life, they decide to take a break from Facebook or the like. It is too hard to see everyone else's amazing life paraded before them while they struggle.
There have been plenty of times in my life when I didn't like my narrative. To this day, I hate that it took me until I was almost thirty to meet my husband. Part of that is because he is so awesome, and it would have been fun to have more time together exploring the world and indulging in other random adventures before we settled into having kids. But another part of it is because it made me feel bad. I wondered why it was taking me longer than almost any of my friends to meet Mr. Right. Was there something wrong with me? On first dates, when guys would act seemingly perplexed about how I could still be single, I struggled to come up with a narrative that would alleviate whatever fears they had about me seeming too good to be true.
But then I did meet my husband, and he was dashing and handsome and we got married and everything was beautiful and perfect. I didn't need to worry about controlling the narrative because it was just good. And perfect. When we decided to start our family and got pregnant our first month of trying, we were that couple that annoyingly jokes to themselves about not realizing how fertile we were.
Now, my son's birth definitely deviated from what I wanted our story to entail. I always understood just getting the baby out and keeping mama and baby healthy is what is most important, so as my due date approached, I remained open to any eventuality. I also took the time to try to prepare myself for giving birth naturally, even though how can you ever really prepare for THAT?!
Well, my due date came and went. I had to get induced, labor stalled, I spiked a high fever while our son went in to distress and I had to be rushed in to have a c-section. I cried, not because it wasn't the birth I'd hoped for, but because they told me our son would have to go straight to the NICU. When all my friends were posting beautiful photos in their hospital beds, holding their newborns, exhausted but glowing, I had none of that. Both myself and our child were sick, swollen and fighting to recover. I didn't post any photos until we both started to look a little more normal.
All of that soon became a distant memory though as we did heal and my son proved to be healthy. He has grown to be a happy and fun little guy, and it is easy to reflect that in our Facebook status updates. What we didn't share was that when we were ready to get pregnant again, it took us longer to conceive Hailey. That we were starting to feel anxious --- that everyone around us seemed to be conceiving much more easily than us. No one wants infertility to be their narrative. It feels embarrassing after all those middle school health classes that make you feel like if you look at a boy funny and sneeze, you will get pregnant.
But everything turned out to be fine because we finally did conceive, and happily announced it to everyone. I cried the day I found out we were having a girl. Ever since I was little and thought about the family I might someday have, I always pictured two children. A son first, and then a daughter. I couldn't believe that God was granting me my dream --- my vision of a perfect family. I think I was literally on cloud nine.
And then I gave birth to Hailey. And just shy of four months later, she died in my arms. How the HELL does that become our narrative? Some days, the idea that this is now our story is what upsets me the most. I think NO, NO, NOOOO!!!! Our story canNOT be that I finally found the love of my life, we gave birth to a beautiful son and then a daughter and then she DIED. I don't WANT to be the woman who has a piece of her heart always missing for her child who is in Heaven. I don't want this to be our story. We were perfect. This is awful. This awful trauma in our lives can never be changed. It is US.
You see, how we see ourselves is important. It often isn't the truth about who we are that really matters: it is how we choose to decipher that truth and share it with the world. And when we feel helpless about controlling our own narrative is often when we feel the worst. What I expressed above is about feeling victimized by our journey and this new narrative that I feel is being forced upon us.
But, Hailey is teaching me something here. In many ways, the saying that "control is just an illusion" is true. We often cannot control what happens to us in life. If we could, I sure as hell would never have lost my daughter. I would have found a way to stop it --- to make her better, to keep her with me here on Earth.
What I CAN do is control the narrative. But I am doing it differently now than I ever have before. I'm not trying to put the "spin" on some bad news as I did for my client all those years ago. I'm not trying to hide the hurt of feeling lonely before finding my husband, or the anxiety of trying to conceive. That type of control was about avoiding vulnerability and hurt and damage.
Now I am controlling the narrative by --- at the vey least --- not hiding from it. By embracing the pain, by being honest and raw and vulnerable. I am not denying the ugly parts, but taking ownership of it in front of all of you. By admitting to you that I hate and fear that the death of a child is now part of our story. That I don't want it to be the single defining characteristic of the rest of our lives --- I beg you not to put us in that box.
I want to be able to heal, but also always cherish our daughter and our time with her. Yes, I am struggling with how to view our family now that my perfect vision of us has been smashed. Losing that narrative is, for me, like mourning another death in and of itself. I often cry about it. All I know is that we are a work in progress, and that our story will continue to evolve. And I have hope. I know I need to stop worrying about what our narrative WAS, because I have hope for what will be. With love.
The above is an anecdote from my working days, but you should be able to recognize --- especially in the age of social media --- how much time we all spend trying to control our personal narratives. Obviously, we all want to look good. We want to look like we are leading our best lives. It is probably a big part of why, when someone is going through a rough patch in life, they decide to take a break from Facebook or the like. It is too hard to see everyone else's amazing life paraded before them while they struggle.
There have been plenty of times in my life when I didn't like my narrative. To this day, I hate that it took me until I was almost thirty to meet my husband. Part of that is because he is so awesome, and it would have been fun to have more time together exploring the world and indulging in other random adventures before we settled into having kids. But another part of it is because it made me feel bad. I wondered why it was taking me longer than almost any of my friends to meet Mr. Right. Was there something wrong with me? On first dates, when guys would act seemingly perplexed about how I could still be single, I struggled to come up with a narrative that would alleviate whatever fears they had about me seeming too good to be true.
But then I did meet my husband, and he was dashing and handsome and we got married and everything was beautiful and perfect. I didn't need to worry about controlling the narrative because it was just good. And perfect. When we decided to start our family and got pregnant our first month of trying, we were that couple that annoyingly jokes to themselves about not realizing how fertile we were.
Now, my son's birth definitely deviated from what I wanted our story to entail. I always understood just getting the baby out and keeping mama and baby healthy is what is most important, so as my due date approached, I remained open to any eventuality. I also took the time to try to prepare myself for giving birth naturally, even though how can you ever really prepare for THAT?!
Well, my due date came and went. I had to get induced, labor stalled, I spiked a high fever while our son went in to distress and I had to be rushed in to have a c-section. I cried, not because it wasn't the birth I'd hoped for, but because they told me our son would have to go straight to the NICU. When all my friends were posting beautiful photos in their hospital beds, holding their newborns, exhausted but glowing, I had none of that. Both myself and our child were sick, swollen and fighting to recover. I didn't post any photos until we both started to look a little more normal.
All of that soon became a distant memory though as we did heal and my son proved to be healthy. He has grown to be a happy and fun little guy, and it is easy to reflect that in our Facebook status updates. What we didn't share was that when we were ready to get pregnant again, it took us longer to conceive Hailey. That we were starting to feel anxious --- that everyone around us seemed to be conceiving much more easily than us. No one wants infertility to be their narrative. It feels embarrassing after all those middle school health classes that make you feel like if you look at a boy funny and sneeze, you will get pregnant.
But everything turned out to be fine because we finally did conceive, and happily announced it to everyone. I cried the day I found out we were having a girl. Ever since I was little and thought about the family I might someday have, I always pictured two children. A son first, and then a daughter. I couldn't believe that God was granting me my dream --- my vision of a perfect family. I think I was literally on cloud nine.
And then I gave birth to Hailey. And just shy of four months later, she died in my arms. How the HELL does that become our narrative? Some days, the idea that this is now our story is what upsets me the most. I think NO, NO, NOOOO!!!! Our story canNOT be that I finally found the love of my life, we gave birth to a beautiful son and then a daughter and then she DIED. I don't WANT to be the woman who has a piece of her heart always missing for her child who is in Heaven. I don't want this to be our story. We were perfect. This is awful. This awful trauma in our lives can never be changed. It is US.
You see, how we see ourselves is important. It often isn't the truth about who we are that really matters: it is how we choose to decipher that truth and share it with the world. And when we feel helpless about controlling our own narrative is often when we feel the worst. What I expressed above is about feeling victimized by our journey and this new narrative that I feel is being forced upon us.
But, Hailey is teaching me something here. In many ways, the saying that "control is just an illusion" is true. We often cannot control what happens to us in life. If we could, I sure as hell would never have lost my daughter. I would have found a way to stop it --- to make her better, to keep her with me here on Earth.
What I CAN do is control the narrative. But I am doing it differently now than I ever have before. I'm not trying to put the "spin" on some bad news as I did for my client all those years ago. I'm not trying to hide the hurt of feeling lonely before finding my husband, or the anxiety of trying to conceive. That type of control was about avoiding vulnerability and hurt and damage.
Now I am controlling the narrative by --- at the vey least --- not hiding from it. By embracing the pain, by being honest and raw and vulnerable. I am not denying the ugly parts, but taking ownership of it in front of all of you. By admitting to you that I hate and fear that the death of a child is now part of our story. That I don't want it to be the single defining characteristic of the rest of our lives --- I beg you not to put us in that box.
I want to be able to heal, but also always cherish our daughter and our time with her. Yes, I am struggling with how to view our family now that my perfect vision of us has been smashed. Losing that narrative is, for me, like mourning another death in and of itself. I often cry about it. All I know is that we are a work in progress, and that our story will continue to evolve. And I have hope. I know I need to stop worrying about what our narrative WAS, because I have hope for what will be. With love.
Monday, February 13, 2017
What to Say?
I often listen to NPR on the radio in my car as I am driving around. Today being the precursor to Valentine's Day, they broadcasted an interesting interview with a woman who writes greeting cards of a special nature. The lead in was about a Valentine's Day card she designed for people who had just started dating right before the holiday and felt awkward about whether or not to celebrate it with their new potential partner. But then the interviewer asked the card designer about how she got her start, and she talked about how she really began her career by trying to write better greeting cards for grief and illness. She shared that she'd battled cancer 15 years prior, and in doing so realized "get well" cards weren't necessarily appropriate for someone who might not get well. Nor did grief cards always adequately address a situation.
We, as a society, have such a difficult time addressing pain and suffering. When Hailey was first sick and too ill for me to hold much, I passed some of my time in the hospital reading a book called Love Warrior. It is an amazing story that changed my life and since I think it would do so many women good to read it for themselves, I don't want to give too much of it away. So I will just say that at one point in the story, the woman's family goes through something very hard. The woman grieves, and sometimes can't help but do it in front of the children, and the children notice. There is this scene in the book when they are all sitting at a table together, bonded in feeling sad and lost and confused. And as the children start to embrace the moment and ask questions, the mother gets up, starts back into the motion of every day life and sends her kids off to do trivial things. She then realizes what she has just done --- that without words, she had just shown her children to push their grief down or away instead of confronting it, as was their natural inclination. Instead of bonding together in that moment with honesty and questions and shared pain and love, she literally and figuratively separated each of them onto a solitary path. She regretted it and vowed to never do it again.
In losing our daughter, I am trying to embrace every emotion I experience. I know even the unpleasant ones serve a purpose, and so as I mentioned in my last post, I've had to give up all embarrassment about crying in front of others...that means in front of friends and even strangers. It is part of why I find this blog so helpful. Everyone's path through grief is different, but for me, the only way to survive my grief is to set it free. I am sharing it with my world, and my world continues to help lift me up in this time of sorrow. I am not ashamed. I don't regret. There are no thoughts or feelings I experience that need to be hidden away in darkness. I have loved. I have loved fiercely and I have lost and there is not shame in that.
But I think it is easier for me to own my grief than it is for others to watch and support me through it. My friends and family love me. It hurts them to see me suffer, and they don't want to hurt me any deeper if they should happen to say or do the wrong thing. I will never forget that in the final days of letting go, my mother told me that both my parents and my mother-in-law were crying so much not just for losing Hailey, but also for the pain they experienced at watching their adult children --- my husband and I --- suffer the loss of our child. Their hearts broke for us on more than one level. In addition to the grief we felt at losing Hailey, it also hurt them to see us hurt so badly, and to feel helpless to alleviate any of our pain.
If those closest to us struggle to find comfort for us during such a trial, it is all the more understandable that more casual acquaintances feel torn about whether or not to reach out or what to say. Every grieving parent is different, but for me, please know that I am just happy to hear from you. It doesn't matter how casually I once knew you or what you say. In fact, it really doesn't matter if I ever knew you at all or if you have just stumbled onto this blog. If I know your heart is in the right place and you are simply trying to show support, you cannot offend me or say the wrong thing, I promise.
Please don't feel afraid to tell me if you are pregnant, or complain about your pregnancy pains or your own kids. Just because I lost Hailey, I don't begrudge anyone their happiness or their own healthy children. Kids are one of life's greatest blessings and losing Hailey has only made me want more. That being said, I also know kids can provide some of life's greatest tests of patience and we are all in this together, so please know I don't ever think negatively of you if you complain about your kids' behavior. Bitterness ages us, both inside and out, and I am so thankful it is not a place my heart and mind ever tend to go. (I might also attribute that to being married to one of the happiest souls God ever created. My husband's good nature may be rubbing off on me!)
All of this being said, please know that I also don't always know what to say either. Mainly, to strangers. I'm not embarrassed to talk about Hailey with people who know us, but what do I say to strangers? For example, when the woman cutting my son's hair or the man ahead of us in the grocery line asks if I have other children. It would destroy my heart in an unhealthy way to deny that I had a daughter. But at the same time, I don't want to force my grief on to a stranger for the obligatory "Oh honey, I'm so sorry." I know most anyone would pity our suffering and loss - I don't need to force them to say it. Furthermore, I dislike the thought of trying to say something like "Yes, we have our son here and a daughter in Heaven." It just feels like finding a more cute way to say something ugly. So, I feel stuck between a rock and a hard place and haven't stumbled on any good solutions. If you have any, I'd be happy to hear them!
For now, thank you for continuing to stand by me on this journey. I know grief is scary and it can make those that love us feel helpless and that is such a torturous feeling to experience. So thank you for being brave enough to read this, to say hi to me, to send me cards and thoughtful packages and for asking me out to coffee and lunch. For treating me normally, too, and telling me about your own lives and pregnancies and other adventures. Grief is awkward but we don't have to hide from it. You and I are proof that we can embrace it and do it together and be so much better for it. With love.
We, as a society, have such a difficult time addressing pain and suffering. When Hailey was first sick and too ill for me to hold much, I passed some of my time in the hospital reading a book called Love Warrior. It is an amazing story that changed my life and since I think it would do so many women good to read it for themselves, I don't want to give too much of it away. So I will just say that at one point in the story, the woman's family goes through something very hard. The woman grieves, and sometimes can't help but do it in front of the children, and the children notice. There is this scene in the book when they are all sitting at a table together, bonded in feeling sad and lost and confused. And as the children start to embrace the moment and ask questions, the mother gets up, starts back into the motion of every day life and sends her kids off to do trivial things. She then realizes what she has just done --- that without words, she had just shown her children to push their grief down or away instead of confronting it, as was their natural inclination. Instead of bonding together in that moment with honesty and questions and shared pain and love, she literally and figuratively separated each of them onto a solitary path. She regretted it and vowed to never do it again.
In losing our daughter, I am trying to embrace every emotion I experience. I know even the unpleasant ones serve a purpose, and so as I mentioned in my last post, I've had to give up all embarrassment about crying in front of others...that means in front of friends and even strangers. It is part of why I find this blog so helpful. Everyone's path through grief is different, but for me, the only way to survive my grief is to set it free. I am sharing it with my world, and my world continues to help lift me up in this time of sorrow. I am not ashamed. I don't regret. There are no thoughts or feelings I experience that need to be hidden away in darkness. I have loved. I have loved fiercely and I have lost and there is not shame in that.
But I think it is easier for me to own my grief than it is for others to watch and support me through it. My friends and family love me. It hurts them to see me suffer, and they don't want to hurt me any deeper if they should happen to say or do the wrong thing. I will never forget that in the final days of letting go, my mother told me that both my parents and my mother-in-law were crying so much not just for losing Hailey, but also for the pain they experienced at watching their adult children --- my husband and I --- suffer the loss of our child. Their hearts broke for us on more than one level. In addition to the grief we felt at losing Hailey, it also hurt them to see us hurt so badly, and to feel helpless to alleviate any of our pain.
If those closest to us struggle to find comfort for us during such a trial, it is all the more understandable that more casual acquaintances feel torn about whether or not to reach out or what to say. Every grieving parent is different, but for me, please know that I am just happy to hear from you. It doesn't matter how casually I once knew you or what you say. In fact, it really doesn't matter if I ever knew you at all or if you have just stumbled onto this blog. If I know your heart is in the right place and you are simply trying to show support, you cannot offend me or say the wrong thing, I promise.
Please don't feel afraid to tell me if you are pregnant, or complain about your pregnancy pains or your own kids. Just because I lost Hailey, I don't begrudge anyone their happiness or their own healthy children. Kids are one of life's greatest blessings and losing Hailey has only made me want more. That being said, I also know kids can provide some of life's greatest tests of patience and we are all in this together, so please know I don't ever think negatively of you if you complain about your kids' behavior. Bitterness ages us, both inside and out, and I am so thankful it is not a place my heart and mind ever tend to go. (I might also attribute that to being married to one of the happiest souls God ever created. My husband's good nature may be rubbing off on me!)
All of this being said, please know that I also don't always know what to say either. Mainly, to strangers. I'm not embarrassed to talk about Hailey with people who know us, but what do I say to strangers? For example, when the woman cutting my son's hair or the man ahead of us in the grocery line asks if I have other children. It would destroy my heart in an unhealthy way to deny that I had a daughter. But at the same time, I don't want to force my grief on to a stranger for the obligatory "Oh honey, I'm so sorry." I know most anyone would pity our suffering and loss - I don't need to force them to say it. Furthermore, I dislike the thought of trying to say something like "Yes, we have our son here and a daughter in Heaven." It just feels like finding a more cute way to say something ugly. So, I feel stuck between a rock and a hard place and haven't stumbled on any good solutions. If you have any, I'd be happy to hear them!
For now, thank you for continuing to stand by me on this journey. I know grief is scary and it can make those that love us feel helpless and that is such a torturous feeling to experience. So thank you for being brave enough to read this, to say hi to me, to send me cards and thoughtful packages and for asking me out to coffee and lunch. For treating me normally, too, and telling me about your own lives and pregnancies and other adventures. Grief is awkward but we don't have to hide from it. You and I are proof that we can embrace it and do it together and be so much better for it. With love.
Sunday, February 12, 2017
We Are More Okay Than You Might Think
I think that when people imagine how we might be doing, they picture me curled up in a ball on the floor, crying. I'm not sure what they picture for my husband. And it isn't to say we haven't had these moments, but sometimes I feel guilty for how we are doing. I wouldn't say "for how well we are doing" because that may be a stretch. But we are probably doing better than you might think.
As you might know, everyone's path through grief is different. It just so happens that our path with Hailey gave us time to grieve along the way. I think it is different for people who lose a child suddenly, or if they've had more time with their child before they are ripped away.
For those who lose a child suddenly, there is no warning. There is no growing accustomed to the thought. There is no chance to build memories to commemorate the child before they go. As hard as it was to watch Hailey suffer, we had time to come to terms with our path, and to do things by which to remember her...we snipped a lock of her hair, captured her hand prints and foot prints, made a mold of us holding her hand, and filmed plenty of photos and videos. I even took home some of the diaper cream we used in the hospital because I now associate that smell with her more than any other.
Furthermore, when we mourn her, yes - we mourn the almost four sweet months we had with her. But I think what we mourn even more than that is the life we thought we were going to have with our daughter. My husband mourns that he will never get to be a mess on her wedding day. I mourn that I won't have a little mini-me to hang out with while my son goes hunting with his Daddy.
For families who lose an older child, they mourn the many more memories they have with their child in addition to daydreams about what the child's future could have been.
Beyond these two facts, our path with Hailey taught me there are fates worse than death. Some children are born or become so sick that they exist in a state just strong enough to keep alive, but not well enough to move out of bed or really embrace life in any significant way. What a hard path to walk.
So even though our hearts are broken and this IS a very hard chapter of life, I know it could be even harder...whether for Hailey, for us, or both. When we lose a child, it is easy to be mad at God because we imagine all our child's life could have been...but that is our optimistic nature talking. For all we know, our child's life could have been worse than anything we could have imagined and God spared them. So without knowing either way, I just try to be faithful and trust in Him.
Some days I wake up and wonder if the past year even happened. It was in January 2016 that I found out I was pregnant. Now it is February 2017 and we are still only a family of three. Did I really have a daughter? Did we really pass all that time in the hospital and experience all that terror, just to feel like we are right back where we started at this time last year? In some ways, it feels like a blur and I question reality.
And even though I will tell you we are doing better than you might think, and that I'm not curled up on the floor crying, I do still cry plenty. I was never really a crier before losing Hailey, and certainly NEVER cried publicly. But I've made peace with the fact that I cry at random these days and often in public. Some days I'm great and talk about Hailey just fine. The other day, when the woman cutting my son's hair asked me if I had any other children, I had to fight back tears. I wasn't sure what to say...but that is another blog post in and of itself. Yesterday, when my neighbor and friend told me she wanted to put in a bench and plaque in our neighborhood in Hailey's memory, I just about started crying. Every time I write one of these blog posts --- even if it is a happy one --- I cry.
But yes, I can get out of bed and function. I appreciate my son and husband and dog and really everything more than I ever have before. I am hopeful for the future. I still want to try to have more children, even with the risk of this genetic syndrome hanging over our heads. On most days, I can talk about Hailey without crying or feeling too much sadness. Grief is weird, and maybe next month will be way worse. Who knows? But for now, I think we are doing okay, given the circumstances. We have the love and support of some pretty amazing people in our lives and really, that is all we could ever ask for. With love.
As you might know, everyone's path through grief is different. It just so happens that our path with Hailey gave us time to grieve along the way. I think it is different for people who lose a child suddenly, or if they've had more time with their child before they are ripped away.
For those who lose a child suddenly, there is no warning. There is no growing accustomed to the thought. There is no chance to build memories to commemorate the child before they go. As hard as it was to watch Hailey suffer, we had time to come to terms with our path, and to do things by which to remember her...we snipped a lock of her hair, captured her hand prints and foot prints, made a mold of us holding her hand, and filmed plenty of photos and videos. I even took home some of the diaper cream we used in the hospital because I now associate that smell with her more than any other.
Furthermore, when we mourn her, yes - we mourn the almost four sweet months we had with her. But I think what we mourn even more than that is the life we thought we were going to have with our daughter. My husband mourns that he will never get to be a mess on her wedding day. I mourn that I won't have a little mini-me to hang out with while my son goes hunting with his Daddy.
For families who lose an older child, they mourn the many more memories they have with their child in addition to daydreams about what the child's future could have been.
Beyond these two facts, our path with Hailey taught me there are fates worse than death. Some children are born or become so sick that they exist in a state just strong enough to keep alive, but not well enough to move out of bed or really embrace life in any significant way. What a hard path to walk.
So even though our hearts are broken and this IS a very hard chapter of life, I know it could be even harder...whether for Hailey, for us, or both. When we lose a child, it is easy to be mad at God because we imagine all our child's life could have been...but that is our optimistic nature talking. For all we know, our child's life could have been worse than anything we could have imagined and God spared them. So without knowing either way, I just try to be faithful and trust in Him.
And even though I will tell you we are doing better than you might think, and that I'm not curled up on the floor crying, I do still cry plenty. I was never really a crier before losing Hailey, and certainly NEVER cried publicly. But I've made peace with the fact that I cry at random these days and often in public. Some days I'm great and talk about Hailey just fine. The other day, when the woman cutting my son's hair asked me if I had any other children, I had to fight back tears. I wasn't sure what to say...but that is another blog post in and of itself. Yesterday, when my neighbor and friend told me she wanted to put in a bench and plaque in our neighborhood in Hailey's memory, I just about started crying. Every time I write one of these blog posts --- even if it is a happy one --- I cry.
But yes, I can get out of bed and function. I appreciate my son and husband and dog and really everything more than I ever have before. I am hopeful for the future. I still want to try to have more children, even with the risk of this genetic syndrome hanging over our heads. On most days, I can talk about Hailey without crying or feeling too much sadness. Grief is weird, and maybe next month will be way worse. Who knows? But for now, I think we are doing okay, given the circumstances. We have the love and support of some pretty amazing people in our lives and really, that is all we could ever ask for. With love.
Tuesday, February 7, 2017
Draw Comfort From Your Surroundings
I know I just posted last night, but it was a rather sad post about the loss of a friend and I want to get back to talking about everything I am learning from Hailey. One of the tiny lessons she bestowed upon me is that no matter what, we can always draw comfort from our surroundings. As a military spouse, this is a particularly important concept to embrace because we move around the country so frequently. We constantly have to make new friends, learn our way around new streets and towns, try to retrofit our furnishings into new spaces, and make a house a home when often it is a rental or we are living on post and aren't allowed to paint the walls.
We are luckier than most with babies in the NICU because we got to bring Hailey home for a period of time. We had just about four weeks with her at home with us, living as a normal family of four and thinking things were all wonderful. But then things headed south and Hailey spent the remainder of her almost four months on earth fighting for her life in the hospital. Her days and nights were often filled with discomfort. I held her as much as possible and tried to push all of my hopes for comfort and healing out of my body and into hers. I thought if I could just love her enough, she could maybe get better. And boy, did she fight. She fought her way back from so many bad turns. And I think she partly derived the strength to do so from her surroundings. From all of us who held her, but even just from appreciating her bed and her room.
From birth, Hailey was always a cuddler. I know most babies are snuggly or really, how much can they protest being held when they are so young and dependent on us? But I'd already had a son and in comparing my daughter to him, I knew she was different. She would fold herself into you, revel in your embrace, and would always try to hold on to you with her dainty and delicate little hands. If she couldn't hold on to yours, she would fold her own hands over each other like the precious little lady she was. I have numerous photos on my phone of her clasping on to us. She knew how to give and receive love and draw strength from others when she needed to.
Hailey also understood how to embrace her surroundings. When there wasn't a person close enough to hold, she would grab on to the sides of her crib or would even hold on to her medical tubes just to try to hold something. It broke my heart that she was searching so hard for comfort, but I am thankful she found it, no matter the means.
So often in life, we buck up against our surroundings when they aren't to our liking. Change is hard. New places are hard, our jobs can be hard at times, we can have bosses and coworkers or neighbors we dislike. But I know if Hailey can find comfort holding her myriad of medical tubes in the NICU, then I will be damned if I can't always find the good in my own surroundings.
At the very end of her life, when Hailey was in distress from being intubated, she needed increasing amounts of sedatives and pain killers to remain calm and comfortable. But for the last two days before we let her go, when family and friends came in from far and wide to all meet her, hold her and be with her, the nurses were amazed at the dip in sedation she required. It was as if all of our love sustained her and gave her a comfort even better than the medicine could.
Hailey has shown me how to appreciate the smallest things. Grab on to the medical tubes if that is the only comfort you can find to get yourself through. Because better will come. As the old saying goes, "this to shall pass." And you can take the hard way there, fighting everything around you, or you can help ease your own suffering. Don't let commotion distract you --- be kind to yourself and never let go of what matters. With love.
We are luckier than most with babies in the NICU because we got to bring Hailey home for a period of time. We had just about four weeks with her at home with us, living as a normal family of four and thinking things were all wonderful. But then things headed south and Hailey spent the remainder of her almost four months on earth fighting for her life in the hospital. Her days and nights were often filled with discomfort. I held her as much as possible and tried to push all of my hopes for comfort and healing out of my body and into hers. I thought if I could just love her enough, she could maybe get better. And boy, did she fight. She fought her way back from so many bad turns. And I think she partly derived the strength to do so from her surroundings. From all of us who held her, but even just from appreciating her bed and her room.
From birth, Hailey was always a cuddler. I know most babies are snuggly or really, how much can they protest being held when they are so young and dependent on us? But I'd already had a son and in comparing my daughter to him, I knew she was different. She would fold herself into you, revel in your embrace, and would always try to hold on to you with her dainty and delicate little hands. If she couldn't hold on to yours, she would fold her own hands over each other like the precious little lady she was. I have numerous photos on my phone of her clasping on to us. She knew how to give and receive love and draw strength from others when she needed to.
So often in life, we buck up against our surroundings when they aren't to our liking. Change is hard. New places are hard, our jobs can be hard at times, we can have bosses and coworkers or neighbors we dislike. But I know if Hailey can find comfort holding her myriad of medical tubes in the NICU, then I will be damned if I can't always find the good in my own surroundings.
At the very end of her life, when Hailey was in distress from being intubated, she needed increasing amounts of sedatives and pain killers to remain calm and comfortable. But for the last two days before we let her go, when family and friends came in from far and wide to all meet her, hold her and be with her, the nurses were amazed at the dip in sedation she required. It was as if all of our love sustained her and gave her a comfort even better than the medicine could.
Hailey has shown me how to appreciate the smallest things. Grab on to the medical tubes if that is the only comfort you can find to get yourself through. Because better will come. As the old saying goes, "this to shall pass." And you can take the hard way there, fighting everything around you, or you can help ease your own suffering. Don't let commotion distract you --- be kind to yourself and never let go of what matters. With love.
Monday, February 6, 2017
On Being Judged
I would like to start by saying I am far from perfect, and have made my fair share of mistakes in life that people can judge me for. In fact, I always thought it amusing when people who were doing something untoward would yell at you not to judge them. If they knew they'd come up wanting, why still do the very thing they didn't want to get criticized for?
At any rate, when I was younger and perhaps before I'd made many mistakes myself, I held a very strong moral compass and didn't put up with a lot of deviation from it in my friends. I guess it is easy to be like that when you are rather innocent and see the world in the black and white terms that are appropriate to a child. But, my mother quickly noticed I was going through friends too quickly. HA! God bless her: she held a sit down with me and talked to me about becoming more understanding of others because no one is perfect and I soon wouldn't have any friends left at all. She was right.
That lesson my mother tried to impart all those years ago has stuck with me and so I have tried, perhaps too hard at times, to heed her words. I always felt like if I could understand WHY someone was doing what they were doing, it would be harder for me to stay mad at them or judge them. And for the most part, this has proven true and has allowed me to forgive a lot and build some great and long-lasting friendships. (And I appreciate that my friends perhaps already more naturally held such tolerance in their hearts for me!).
I certainly never thought I'd lose one of my longest-held friendships over losing my daughter. That I would lose this friendship for being judged in the black and white terms I viewed others through when I was in middle school. Now, normally I never air my fights with friends or family on Facebook or social media, whether via direct or indirectly passive aggressive posts. But this time, I want to speak my heart in an earnest way. Because believe it or not, I have heard from others and it doesn't seem uncommon to lose friendships over the loss of a loved one. I've talked to at least three other people who have experienced the same. So maybe this is another lesson to learn in my journey with Hailey.
I lost my friend because she did not agree with our decision to let Hailey be at peace. My friend works in the medical field and through our months in the hospital, she helped me navigate Hailey's healthcare to ensure she was getting the right tests, etc. I appreciated having my friend as a sounding board --- she helped me to feel like I was doing everything I could for my daughter in terms of asking the medical staff all the right questions. My friend was our champion for our months in the hospital, even though she lives far away and had never met Hailey. She loved her that much. At least, that is what I told myself when I called to tell this friend when we decided to let Hailey be at peace.
Hailey's heart was failing rapidly, her suffering and fear were clear to me, and we were relatively confident she had a multisystem and terminal genetic disorder. We were just waiting for the tests to officially confirm it. But I couldn't watch my daughter suffer anymore just for a test that might take another month to come back (we'd already been waiting 1.5 months) and was mainly for my peace of mind --- my heart already knew. She had every single symptom of the disorder. I knew the machines couldn't even keep her alive long enough for the tests to come back, and I didn't want to put my daughter through the trauma of a heart surgery I didn't believe she could survive. Especially if tests showed she did have the genetic disorder --- she would die soon after anyway. I've written about all of this in my previous blog posts. I love my daughter madly. Achingly. But --- no BECAUSE of this immense love --- I had to set her free from her suffering.
When I called my friend, crying, to tell her the news, she raised her voice to me. She told me I couldn't do it. That I would regret it for the rest of my life. That I couldn't take it back. Not ever. That I could handle this medical battle...that I was strong and had come through worse, and I could do this. As if I were letting my daughter go because I wasn't up to the challenge. It was all so wrong, and so incredibly hurtful. I sat there, in shock, as I listened to her. I started crying harder. Those who were in my daughter's hospital room with me at the time looked on in horrified shock themselves as they heard how my side of the conversation was going and watched me begin to cry harder. Sobbing, I told my friend I couldn't listen anymore and had to go. I felt like I'd been punched in the heart. One of my best friends thought I was killing my child. Her words devastated my world beyond the shambles it was already in.
By the next day, I collected myself and surprised my family by reaching out to this friend to mend fences. I think everyone expected that she should call me to apologize, but I knew she wouldn't. It is not in her nature. And, even though she had hurt me terribly and I thought she was incredibly out of line, I didn't want to have a fight with a friend hanging over my head as I watched my daughter die. So I made the call. I told my friend I appreciated her right to voice her opinion, and asked that even if she didn't agree with it, to respect mine and my husband's decision for our daughter and to love us through it anyway. I told her I understood that she thought she knew a lot of the medical picture, but she wasn't there in person, and didn't know everything, and we were doing the best we could. She said she could love us through it. She didn't make it up for Hailey's burial, but she did send a card and made a donation to Ronald McDonald House in Hailey's memory, as did other members of her family.
Ironically, it was the day after we buried Hailey that my husband and I finally received the results of the genetic testing. It confirmed that our daughter did have the terminal, multisystem genetic disorder we had suspected. It confirmed that we released her from her suffering in the most gentle and loving way possible. It confirmed my mother's instinct.
I reached out to my friend that same day via text to share the news with her. I thought it might give her some comfort, and maybe ease the thought in her head that I'd given up on my child or killed her, when really I'd listened to what her body was telling me. It was January 8. My friend immediately replied to me, "I can't talk to you about this anymore. I am grieving and need to heal too and focus on me."
Once again, I felt like she had taken an axe to my chest. WHAT?! I was hurt that she would shut me down like that. Confused and infuriated at the implication that her grief could possibly be any greater than mine. That in the worst moments of my life, she needed to focus on herself. And after I'd already overlooked how she had treated me about letting Hailey go...that I'd had to reach out to her to mend that fence, and that she had said she could respect my decision and love me through it. To end up like that. Her blunt words weren't even prefaced with an apology. Stunned, all I wrote back was "okay", and gave myself time to cool down. Gave my friend time to go "do her". I considered my mother's lesson from childhood once again, and asked myself how much was too much? At what point was I justified in letting a lifetime friendship go? As the weeks passed, I struggled to imagine a way our friendship could survive all of this.
And then this morning, February 6, while I was feeding my son breakfast and preparing to take him to school, a new text message popped up from my friend. I hadn't talked to her since replying "okay" to her last message almost a month ago. She wanted to acknowledge that we hadn't talked in a while, but she was still "in the process of healing", that Hailey's death was "very hard for her", and that she was "not prepared to talk to me for a while".
Hurt and rage flooded through me like never before. I'd left her alone. I was enjoying a peaceful morning with my son and BAM. For the THIRD time, she took an axe to my chest --- once again reminding me of her disdain for our decision for Hailey. Once again implying her grief and healing were such an important process compared to mine. That SHE wasn't ready to talk to ME. How cruel could she be? Now she was proactively hurting me.
I'd had enough. I boiled over. The friendship was done and I knew it. I knew if I told her how I truly felt, it would officially be over because she never apologizes and never backs down. I sent a long text back to her. I didn't cuss and spoke as politely as I could but let my outrage be known. As if anyone could ever know or love Hailey more than I did. As if I wouldn't put her life above my own. As if I didn't try to make that bargain with God. As if I don't suffer. As if anyone has the right to speak to me as my "friend" did. I told her that I was trying to understand her behavior but it baffled me and I could no longer see a way forward for our friendship. That I wished her the best, and hope that some day she is blessed with healthy children because although I wished someday she would experience some enlightenment about our situation, I wouldn't wish ANYONE to go through what we suffered with Hailey in order to learn some compassion.
As expected, my now ex-friend doubled down on her standpoint, took no responsibility for how she has hurt me and insisted she has been an amazing friend and has a right to disagree with me and express her decision. Sure. Maybe if we were talking about politics and she had expressed herself respectfully. Not when you yell at me as I sit by my daughter's death bed and imply I didn't love my daughter enough and that I gave up on her and let her die. So I concluded by telling her I found her lack of self-awareness astounding and said goodbye.
So folks, just when you think life can't get uglier, it sometimes does and in the most surprising ways. I was so hurt, I (uncharacteristically) posted to Facebook about the fight and said simply that I couldn't believe I was losing a friend over losing my daughter. But you know what? Then something beautiful happened. Friends from all walks of life, both old and new, reached out to me both publicly and privately to offer their support. To send love, to lift me up, to just let me know they are there. That they are praying for us and thinking about us. All of these friends helped ease the ache in my heart. They helped me to calm down and see the love and joy all around me.
I will never be friends with my old friend again. I forgive her because I don't know what path she is walking, but I do know ours no longer intersect and I can make peace with that. I maintain that I wish her well. I decided to share this story not to be spiteful, but as I said before, rather after hearing from others that they'd experienced similar. If I am sharing the journey of my life with and then losing Hailey, this is part of it. You unexpectedly and painfully lose some friends, but you gain so many new and wonderful ones that you wonder how so many people can love you this much and you hope to hang on to it for all of your days. I truly feel so blessed for all of you and am slowly trying to balance my grief with writing thank you cards to all of you for all you have given us. Which is a somewhat silly endeavor because words can never do justice to the gratitude in my heart, but I will give it the old college try! With love.
At any rate, when I was younger and perhaps before I'd made many mistakes myself, I held a very strong moral compass and didn't put up with a lot of deviation from it in my friends. I guess it is easy to be like that when you are rather innocent and see the world in the black and white terms that are appropriate to a child. But, my mother quickly noticed I was going through friends too quickly. HA! God bless her: she held a sit down with me and talked to me about becoming more understanding of others because no one is perfect and I soon wouldn't have any friends left at all. She was right.
That lesson my mother tried to impart all those years ago has stuck with me and so I have tried, perhaps too hard at times, to heed her words. I always felt like if I could understand WHY someone was doing what they were doing, it would be harder for me to stay mad at them or judge them. And for the most part, this has proven true and has allowed me to forgive a lot and build some great and long-lasting friendships. (And I appreciate that my friends perhaps already more naturally held such tolerance in their hearts for me!).
I certainly never thought I'd lose one of my longest-held friendships over losing my daughter. That I would lose this friendship for being judged in the black and white terms I viewed others through when I was in middle school. Now, normally I never air my fights with friends or family on Facebook or social media, whether via direct or indirectly passive aggressive posts. But this time, I want to speak my heart in an earnest way. Because believe it or not, I have heard from others and it doesn't seem uncommon to lose friendships over the loss of a loved one. I've talked to at least three other people who have experienced the same. So maybe this is another lesson to learn in my journey with Hailey.
I lost my friend because she did not agree with our decision to let Hailey be at peace. My friend works in the medical field and through our months in the hospital, she helped me navigate Hailey's healthcare to ensure she was getting the right tests, etc. I appreciated having my friend as a sounding board --- she helped me to feel like I was doing everything I could for my daughter in terms of asking the medical staff all the right questions. My friend was our champion for our months in the hospital, even though she lives far away and had never met Hailey. She loved her that much. At least, that is what I told myself when I called to tell this friend when we decided to let Hailey be at peace.
Hailey's heart was failing rapidly, her suffering and fear were clear to me, and we were relatively confident she had a multisystem and terminal genetic disorder. We were just waiting for the tests to officially confirm it. But I couldn't watch my daughter suffer anymore just for a test that might take another month to come back (we'd already been waiting 1.5 months) and was mainly for my peace of mind --- my heart already knew. She had every single symptom of the disorder. I knew the machines couldn't even keep her alive long enough for the tests to come back, and I didn't want to put my daughter through the trauma of a heart surgery I didn't believe she could survive. Especially if tests showed she did have the genetic disorder --- she would die soon after anyway. I've written about all of this in my previous blog posts. I love my daughter madly. Achingly. But --- no BECAUSE of this immense love --- I had to set her free from her suffering.
When I called my friend, crying, to tell her the news, she raised her voice to me. She told me I couldn't do it. That I would regret it for the rest of my life. That I couldn't take it back. Not ever. That I could handle this medical battle...that I was strong and had come through worse, and I could do this. As if I were letting my daughter go because I wasn't up to the challenge. It was all so wrong, and so incredibly hurtful. I sat there, in shock, as I listened to her. I started crying harder. Those who were in my daughter's hospital room with me at the time looked on in horrified shock themselves as they heard how my side of the conversation was going and watched me begin to cry harder. Sobbing, I told my friend I couldn't listen anymore and had to go. I felt like I'd been punched in the heart. One of my best friends thought I was killing my child. Her words devastated my world beyond the shambles it was already in.
By the next day, I collected myself and surprised my family by reaching out to this friend to mend fences. I think everyone expected that she should call me to apologize, but I knew she wouldn't. It is not in her nature. And, even though she had hurt me terribly and I thought she was incredibly out of line, I didn't want to have a fight with a friend hanging over my head as I watched my daughter die. So I made the call. I told my friend I appreciated her right to voice her opinion, and asked that even if she didn't agree with it, to respect mine and my husband's decision for our daughter and to love us through it anyway. I told her I understood that she thought she knew a lot of the medical picture, but she wasn't there in person, and didn't know everything, and we were doing the best we could. She said she could love us through it. She didn't make it up for Hailey's burial, but she did send a card and made a donation to Ronald McDonald House in Hailey's memory, as did other members of her family.
Ironically, it was the day after we buried Hailey that my husband and I finally received the results of the genetic testing. It confirmed that our daughter did have the terminal, multisystem genetic disorder we had suspected. It confirmed that we released her from her suffering in the most gentle and loving way possible. It confirmed my mother's instinct.
I reached out to my friend that same day via text to share the news with her. I thought it might give her some comfort, and maybe ease the thought in her head that I'd given up on my child or killed her, when really I'd listened to what her body was telling me. It was January 8. My friend immediately replied to me, "I can't talk to you about this anymore. I am grieving and need to heal too and focus on me."
Once again, I felt like she had taken an axe to my chest. WHAT?! I was hurt that she would shut me down like that. Confused and infuriated at the implication that her grief could possibly be any greater than mine. That in the worst moments of my life, she needed to focus on herself. And after I'd already overlooked how she had treated me about letting Hailey go...that I'd had to reach out to her to mend that fence, and that she had said she could respect my decision and love me through it. To end up like that. Her blunt words weren't even prefaced with an apology. Stunned, all I wrote back was "okay", and gave myself time to cool down. Gave my friend time to go "do her". I considered my mother's lesson from childhood once again, and asked myself how much was too much? At what point was I justified in letting a lifetime friendship go? As the weeks passed, I struggled to imagine a way our friendship could survive all of this.
And then this morning, February 6, while I was feeding my son breakfast and preparing to take him to school, a new text message popped up from my friend. I hadn't talked to her since replying "okay" to her last message almost a month ago. She wanted to acknowledge that we hadn't talked in a while, but she was still "in the process of healing", that Hailey's death was "very hard for her", and that she was "not prepared to talk to me for a while".
Hurt and rage flooded through me like never before. I'd left her alone. I was enjoying a peaceful morning with my son and BAM. For the THIRD time, she took an axe to my chest --- once again reminding me of her disdain for our decision for Hailey. Once again implying her grief and healing were such an important process compared to mine. That SHE wasn't ready to talk to ME. How cruel could she be? Now she was proactively hurting me.
I'd had enough. I boiled over. The friendship was done and I knew it. I knew if I told her how I truly felt, it would officially be over because she never apologizes and never backs down. I sent a long text back to her. I didn't cuss and spoke as politely as I could but let my outrage be known. As if anyone could ever know or love Hailey more than I did. As if I wouldn't put her life above my own. As if I didn't try to make that bargain with God. As if I don't suffer. As if anyone has the right to speak to me as my "friend" did. I told her that I was trying to understand her behavior but it baffled me and I could no longer see a way forward for our friendship. That I wished her the best, and hope that some day she is blessed with healthy children because although I wished someday she would experience some enlightenment about our situation, I wouldn't wish ANYONE to go through what we suffered with Hailey in order to learn some compassion.
As expected, my now ex-friend doubled down on her standpoint, took no responsibility for how she has hurt me and insisted she has been an amazing friend and has a right to disagree with me and express her decision. Sure. Maybe if we were talking about politics and she had expressed herself respectfully. Not when you yell at me as I sit by my daughter's death bed and imply I didn't love my daughter enough and that I gave up on her and let her die. So I concluded by telling her I found her lack of self-awareness astounding and said goodbye.
So folks, just when you think life can't get uglier, it sometimes does and in the most surprising ways. I was so hurt, I (uncharacteristically) posted to Facebook about the fight and said simply that I couldn't believe I was losing a friend over losing my daughter. But you know what? Then something beautiful happened. Friends from all walks of life, both old and new, reached out to me both publicly and privately to offer their support. To send love, to lift me up, to just let me know they are there. That they are praying for us and thinking about us. All of these friends helped ease the ache in my heart. They helped me to calm down and see the love and joy all around me.
I will never be friends with my old friend again. I forgive her because I don't know what path she is walking, but I do know ours no longer intersect and I can make peace with that. I maintain that I wish her well. I decided to share this story not to be spiteful, but as I said before, rather after hearing from others that they'd experienced similar. If I am sharing the journey of my life with and then losing Hailey, this is part of it. You unexpectedly and painfully lose some friends, but you gain so many new and wonderful ones that you wonder how so many people can love you this much and you hope to hang on to it for all of your days. I truly feel so blessed for all of you and am slowly trying to balance my grief with writing thank you cards to all of you for all you have given us. Which is a somewhat silly endeavor because words can never do justice to the gratitude in my heart, but I will give it the old college try! With love.
Thursday, February 2, 2017
The Hills and Valleys of Life
I met my husband in 2011 while he was stationed at Fort Campbell, Kentucky and I lived in a cute little apartment in downtown Nashville, Tennessee. I LOVE Nashville, and miss it to this day. I made wonderful, wonderful friends there, got married there, enjoyed the music scene and even became a foodie, which is saying a lot considering I used to live on cereal and Lean Cuisine.
When my husband told me, six months into our marriage, that we would be moving to Fort Leavenworth, Kansas, I was excited but also nervous. Neither of us knew anything about Kansas --- my husband is from Arkansas and I am from Massachusetts. All I could picture was mile upon mile of flat corn fields, while my memory served up black and white movie clips from the Wizard of Oz. Being from New England, I'm used to lush hills and winding roads. How would I do with all of the flatness?
Well, I was in for a surprise. Fort Leavenworth is not flat at all. It is true that there is farmland (yes, corn. But also soybeans!) and the roads tend to be long and straight and plainly named for letters of the alphabet or numbers, but there are also beautiful, rolling hills. The fort itself sits up above the Missouri River, providing a stunning vantage point over the land below.
In October, when Hailey was first admitted to the hospital and her illness was still a mystery, I spent almost every moment of every day and night with her. My husband and other family members would come and go as much as they could, but I never left. I slept by her side in a recliner, and would only leave for an hour or two each day to shower or grab a quick meal. After a month, Hailey began to stabilize and I'd become friends with the nurses who became permanently assigned to my daughter. This gave me enough confidence to leave the hospital, and our room at the Ronald McDonald House, to move back home with my husband and son in our home on post. We realized we couldn't keep going in "crisis mode", that our hospital stay would likely last multiple months, and I needed to find a way to maintain some presence in my two-year-old son's life as well as Hailey's.
Each morning, I would wake up, drop my son off at daycare with his best friend, and drive the hour down to the hospital to see Hailey. As anxious as I always was to see our daughter, I enjoyed the drive. I find the land incredibly beautiful here, and the views would bring me some peace. I started to think about the flat bits of farmland I'd drive through, just on the other side of the Missouri River. How you could see everything as far as your vision would stretch. And then I'd smile as I drove out of the farm fields and up into the hills that bordered them. Some hills were so steep that my stomach would drop if I drove over top of them too fast! The change in perspective got me thinking about the hills and valleys of life.
I love hills and mountains and hiking and canoeing down rivers and four-wheeling through the woods. (Beaches are fun, but I'm a mountain girl at heart.) And yet, I'd compare my life to the flat farm fields I would drive through. I have always tried to exert control: to live a flat life where I could see everything coming as much as possible and prepare for it. And sure, there were some surprises along the way, but I always felt pretty well in charge.
Hailey's illness taught me what an illusion control really is. I have never been more not-in-control in my entire life. Every day held hills and valleys and I never knew which would be when or how fast the next would come. It made my head spin and I grew more and more anxious. But Hailey, and God through her, was teaching me a lesson. And it was this: I don't, actually, want to be in control. They wore me down until I came to that realization.
No matter what I did or didn't do, there was no explanation for what was going on with our daughter. She would get better in one area, only to decline in new and different ways. Trust me, I tried everything. I prayed. I went to the hospital chapel every day and prayed. I would chant prayers at night until I drifted off to sleep. I tried to make bargains with God. I pleaded. At the same time, I also tried to ask the doctors smart questions and to make sure I was doing my scientific research.
All of this to say is that whether you believe in God or science or something else, I implore you to believe in some thing or some one bigger than yourself. It is too exhausting to own complete responsibility for every outcome in your life. It is daunting, and can make you feel helpless. But if you have faith in something greater than yourself, you can share that burden. Even give it up at times.
For me, I personally believe in God. When I realized I was trying to control an utterly uncontrollable event, I did as they say and after great struggle, I "Let Go and Let God." In doing so, I realized the outcome might very well be one I dreaded. But I finally knew it wasn't up to me. And I don't fault God for not giving us the miracle for which we begged. Some people learn things through experiencing miracles while others learn through trials. God chose that we should learn through trial right now, and I accept that.
Losing Hailey has certainly been the single deepest valley of my life. But in coming to this place, and learning to live in it, I know I will be able to better appreciate the view from on top of the next hill, when it comes. This up and down life may be scarier than a flat one, but it will also be richer. I appreciate every little thing so much more than I ever could have imagined before. My heart fills when I see tiny birds chirping because they remind me even the littlest creatures are by God's design and under his care, just as Hailey is. I love my son even more than I did before, and don't take a single thing about him for granted. I hold better and more frequent conversations with God. I've slowed down, and listened more. I look for the divine in everything.
I am sad to say that in May, we will be leaving Fort Leavenworth and its beautiful landscapes behind. But, this next Army move is providing us with a much-appreciated fresh start in Fort Stewart, Georgia. We just bought a house, which I am excited to paint and decorate. The morning light streams into the backside of the house, where we will eat our breakfast together and play. The backyard offers beautiful views, to include a wonderful old tree draped with Spanish Moss. And, shortly after we move in, my husband will deploy again. So, there are more hills and valleys ahead. I have my suspicions on which will be which, but I am going forward with an open heart and an open mind! I am so thankful for our blessings, and for our beautiful angel, Hailey. I take great comfort that she is watching out for us as we take on this next adventure.
When my husband told me, six months into our marriage, that we would be moving to Fort Leavenworth, Kansas, I was excited but also nervous. Neither of us knew anything about Kansas --- my husband is from Arkansas and I am from Massachusetts. All I could picture was mile upon mile of flat corn fields, while my memory served up black and white movie clips from the Wizard of Oz. Being from New England, I'm used to lush hills and winding roads. How would I do with all of the flatness?
Well, I was in for a surprise. Fort Leavenworth is not flat at all. It is true that there is farmland (yes, corn. But also soybeans!) and the roads tend to be long and straight and plainly named for letters of the alphabet or numbers, but there are also beautiful, rolling hills. The fort itself sits up above the Missouri River, providing a stunning vantage point over the land below.In October, when Hailey was first admitted to the hospital and her illness was still a mystery, I spent almost every moment of every day and night with her. My husband and other family members would come and go as much as they could, but I never left. I slept by her side in a recliner, and would only leave for an hour or two each day to shower or grab a quick meal. After a month, Hailey began to stabilize and I'd become friends with the nurses who became permanently assigned to my daughter. This gave me enough confidence to leave the hospital, and our room at the Ronald McDonald House, to move back home with my husband and son in our home on post. We realized we couldn't keep going in "crisis mode", that our hospital stay would likely last multiple months, and I needed to find a way to maintain some presence in my two-year-old son's life as well as Hailey's.
Each morning, I would wake up, drop my son off at daycare with his best friend, and drive the hour down to the hospital to see Hailey. As anxious as I always was to see our daughter, I enjoyed the drive. I find the land incredibly beautiful here, and the views would bring me some peace. I started to think about the flat bits of farmland I'd drive through, just on the other side of the Missouri River. How you could see everything as far as your vision would stretch. And then I'd smile as I drove out of the farm fields and up into the hills that bordered them. Some hills were so steep that my stomach would drop if I drove over top of them too fast! The change in perspective got me thinking about the hills and valleys of life.
I love hills and mountains and hiking and canoeing down rivers and four-wheeling through the woods. (Beaches are fun, but I'm a mountain girl at heart.) And yet, I'd compare my life to the flat farm fields I would drive through. I have always tried to exert control: to live a flat life where I could see everything coming as much as possible and prepare for it. And sure, there were some surprises along the way, but I always felt pretty well in charge.
Hailey's illness taught me what an illusion control really is. I have never been more not-in-control in my entire life. Every day held hills and valleys and I never knew which would be when or how fast the next would come. It made my head spin and I grew more and more anxious. But Hailey, and God through her, was teaching me a lesson. And it was this: I don't, actually, want to be in control. They wore me down until I came to that realization.
No matter what I did or didn't do, there was no explanation for what was going on with our daughter. She would get better in one area, only to decline in new and different ways. Trust me, I tried everything. I prayed. I went to the hospital chapel every day and prayed. I would chant prayers at night until I drifted off to sleep. I tried to make bargains with God. I pleaded. At the same time, I also tried to ask the doctors smart questions and to make sure I was doing my scientific research.
All of this to say is that whether you believe in God or science or something else, I implore you to believe in some thing or some one bigger than yourself. It is too exhausting to own complete responsibility for every outcome in your life. It is daunting, and can make you feel helpless. But if you have faith in something greater than yourself, you can share that burden. Even give it up at times.
For me, I personally believe in God. When I realized I was trying to control an utterly uncontrollable event, I did as they say and after great struggle, I "Let Go and Let God." In doing so, I realized the outcome might very well be one I dreaded. But I finally knew it wasn't up to me. And I don't fault God for not giving us the miracle for which we begged. Some people learn things through experiencing miracles while others learn through trials. God chose that we should learn through trial right now, and I accept that.
Losing Hailey has certainly been the single deepest valley of my life. But in coming to this place, and learning to live in it, I know I will be able to better appreciate the view from on top of the next hill, when it comes. This up and down life may be scarier than a flat one, but it will also be richer. I appreciate every little thing so much more than I ever could have imagined before. My heart fills when I see tiny birds chirping because they remind me even the littlest creatures are by God's design and under his care, just as Hailey is. I love my son even more than I did before, and don't take a single thing about him for granted. I hold better and more frequent conversations with God. I've slowed down, and listened more. I look for the divine in everything.
I am sad to say that in May, we will be leaving Fort Leavenworth and its beautiful landscapes behind. But, this next Army move is providing us with a much-appreciated fresh start in Fort Stewart, Georgia. We just bought a house, which I am excited to paint and decorate. The morning light streams into the backside of the house, where we will eat our breakfast together and play. The backyard offers beautiful views, to include a wonderful old tree draped with Spanish Moss. And, shortly after we move in, my husband will deploy again. So, there are more hills and valleys ahead. I have my suspicions on which will be which, but I am going forward with an open heart and an open mind! I am so thankful for our blessings, and for our beautiful angel, Hailey. I take great comfort that she is watching out for us as we take on this next adventure.
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