I want to begin this post with a photo of us from December 30: it was taken as we baptized and celebrated Hailey in the hospital chapel before removing her from the ventilator and letting her go home with the Lord. What do you see in this photo? I see a family. My husband, son and I hold on to each other, sad and weary and for that moment, separated from our daughter's bedside as the priest prayed over her. But the four of us are there. A family, nonetheless. Weathering this storm. And even though we are now separated from Hailey by an even greater distance, we are still a family.
You learn many things after losing a child. Some things are about yourself and what you are truly made of. What you value. You also find out who will be there for you...and sadly, who won't. Some people will offer you their tightly held and most private stories, and you learn so much more about their hearts. You also learn about your spouse, and your marriage.
Even before we lost Hailey, we learned about the strain having a severely sick child can place on a marriage. I think my husband and I navigated it as well as can be expected, but it is, as anyone would imagine, challenging. For me, I went into protective Mama Bear mode and didn't want to ever leave Hailey's side. She suffered an illness unlike anything any of the doctors had ever seen before and as they came and went off of rotation and nurses changed shifts at 7 a.m. and 7 p.m. each day, I made myself the one constant element in her care. I slept in a recliner by her bed for weeks, only leaving for an hour or two each day to grab a shower and some food.
My husband had to balance the needs of his career, making sure our home didn't implode and the care of our two year old son. The neighbors and our family helped with meals, having the house professionally cleaned, and as the days turned into weeks and months, one neighbor miraculously got our son entered into the same full-time daycare class as her son, who is his best friend. Knowing my son was cared for, happy and thriving at "school" was the single biggest weight off of my shoulders.
As our time in the hospital with Hailey dragged on, my husband tried to encourage me to leave our daughter's bedside to go out to dinner with him once in a while. He also gently asked me to make sure I remained engaged with our son. I fretted about how to do that. I love our son to the moon and back, but he is young enough that I knew he wouldn't remember these days. And thankfully, he is healthy and happy and flexible by nature. But our daughter was sick, and I knew she might only have a short time with us here on earth. How to balance that?
After some time, the doctors started to gather a more complete picture of Hailey's symptoms. She finally stabilized from massive weight loss and a failing digestive and immune system and even started to recover. Over time, I began to sleep at Ronald McDonald House instead of by Hailey's bed every night. My husband would bring our son to the hospital and we'd go outside to the playground, or have family sleepovers at Ronald McDonald House. Eventually, Hailey was doing well enough that I felt comfortable moving back to our home in Fort Leavenworth and just commuting to the hospital each day.
To say that Hailey was doing "well enough" is a bit of a misnomer. In fact, the doctors were considering some horrific and deadly diagnoses...it seemed like it would just be a matter of how long and how painful our daughter's life and death would be. So, she was stable enough for me to come home, but my first few days back were excruciating as we considered what was being discussed. I tried to spend time with our son, but I didn't want to fall apart in front of him all the time. All I could manage was to play with him or watch a show with him for maybe 30 minutes before I had to excuse myself to our bedroom to cry for two hours about our daughter. And then I'd pull myself together and go back downstairs to spend more time with my son before I needed to excuse myself and lose it again.
Toward the end of our journey with Hailey, my husband broke away from work more and more frequently to spend longer amounts of time with us in the hospital. He would hold our daughter, and try to play with her and encourage her and love her in whatever way he could.
I tended to be a grief-stricken mess in the mornings, and that is when my husband would hold me and shelter me. By the end of each day, I'd once again become worn down or accustomed to our path with Hailey, but that was when the toll was heaviest on my husband. And so I would sit and give shelter to his heart, most often as we looked for comfort and salvation in the hospital chapel. We balanced each other out well this way.
On December 23, the doctors met with my husband and I to share Hailey's prognosis. To simplify things, I will just say that her heart was massively failing. Even the life support she was on would not be able to keep her alive for more than a few more weeks. My husband and I took some time to digest this information and over the next day, realized it was time to let our precious daughter go. Yet, we wanted validation from the medical team. We searched for it, but they were hesitant to say anything that might influence our decision. The most common reason they gave for their elusiveness was that every person's value system is different.
Faced with our situation, some parents would want to keep their child with them for as long as possible, no matter his or her condition. Others placed a higher premium not on the amount of time together, but rather the quality of that time. For my husband and I, we wanted to give our daughter peace. She'd ferociously fought back from some incredible lows in the hospital. We were proud of her; we knew she hadn't held anything back, and that she just didn't have anything left to give. It was our chance to give her OUR all --- our hearts --- the most painful and most selfless thing we will likely ever do --- we let our Father take her home to play in Heaven's gardens.
In making this decision, I am so incredibly thankful my husband and I were always on the same page. We may come from different parts of the country, different political parties and different religious denominations, but in this, we were one. Some couples aren't. Sometimes one wants to keep the child alive while the other is ready to let go, and what is an incredibly trying time becomes even worse.
Maybe this is part of why people say the divorce rate is so high for parents who have buried a child. Maybe this is where it starts, and it only worsens through the loss and subsequent grieving process. I don't know. I felt overwhelmed to think that on top of losing our child, we might also lose our marriage. I'd thought we'd been doing pretty well in supporting each other and loving each other through it, but I don't want to be cocky. It is hard to predict what looms in the future. So for the past week, I avoided researching what the actual statistics may be. Some people had told me above 50%. One told me 75%.
Well, today I Googled it. I dug around. And the divorce statistics for parents who've lost a child seem to be one of the biggest myths going. I won't get into all of the details, but the summary is this: most of the stories are anecdotal and not based on empirical research. Plus, for a clean study, don't you really have to assess how healthy the marriage was before the loss of a child? That is a rather subjective thing to do in and of itself.
I won't deny that losing a child can place incredible stress on a marriage. I've heard personal stories of people whose marriage did crumble apart under such circumstances. But many things can stress a marriage to the breaking point: deployments, having to care for elderly parents, the loss of a job or a million other things. I don't know that this one is any worse. Maybe it is...everyone's journey is so different, it is just hard to really declare one way or another.
So for now, we are still a family. We are clinging to each other and loving on each other. We will add a deployment to the mix in the months ahead, but I am hopeful about how we will weather that as well. If nothing else, my husband has a new and special angel to watch out for him overseas.
Just be open. Be kind to each other. Share your hopes and fears. Try not to judge and to know that even the ugliest thoughts can be a natural part of the grieving process. Don't pull apart. If you can help it, pull together and rise above the fray, as we did on Hailey's dying day. And hope to do, for ever more.
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