Anniversaries

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Russ and I celebrated our 30th anniversary on August 4th. It was memorable, if not romantic: we spent it in the hospital with our critically ill daughter.

After 30 years, I can honestly say I don’t remember a single anniversary until this one. We never made a big deal out of them. We married young and poor, and a few days before our first anniversary rolled around, my husband looked at me and asked what are we supposed to do? If I’d known my answer would set the stage for the rest of our married life, I might have answered more carefully. I knew he was really asking if I expected a gift with our extremely limited funds, so I made the practical suggestion that we buy each other’s car tags which were due. That became our tradition for the next 20 years. No wonder I don’t remember any of them.

This year, however, I remember every detail. I remember how on the 2nd, two days before our anniversary, Megan began rapidly deteriorating after two weeks in the hospital with no clear diagnosis. How a day later on the 3rd, we watched her body crash as she fought a dangerous bloodstream infection. How on the morning of the 4th–our anniversary–one doctor admitted to me that he hadn’t expected her to make it through the night. How later that day the doctors performed the biopsy which would confirm their fears. How on the 5th, she started chemotherapy after confirmation of the diagnosis which would change our lives forever. How, while waiting for those results, the nurses gave us an anniversary card, having taken up a collection for a gift card to the hospital coffee shop. They had sweetly taken pity on us, “celebrating” this momentous occasion as we watched our daughter flirt with death.

There are other memorable dates these last couple of months. The date Megan first fell ill: June 5th. The date of the first of ten doctor’s visits trying to determine what was wrong: June 7th. The date of the first indication this was something way more than the virus they’d been saying it was: June 27th. The date of that tenth doctor’s visit, not knowing we wouldn’t be coming home from the ER: July 17th. The date we ate our first dinner together as a family in two months: September 11th.

I thought about these dates recently when a fellow HLH mom wished her daughter a happy “re-birthday” for her bone marrow transplant anniversary. After all of the bad dates we’ve had, this was a reminder that there will be good ones ahead of us to celebrate. So instead of remembering the bad, I’m going to start looking forward to these happy dates:
• The date we receive word there is a donor match.
• The date we see the first signs that Megan’s new marrow is taking hold.
• The all-critical 100th day post-transplant.
• The date we can all be home together again.
• The date her immune system is strong enough for all of us to go together to a restaurant.
• The first day of school.
• The first re-birthday of the transplant which will put this monstrous disease into permanent remission.

For the first time this year as our 30th approached, I had asked to celebrate our anniversary, to be taken to a favorite local Italian restaurant which we don’t eat at often because it’s somewhat expensive. We never made it. My goal is to celebrate there next year, with our family healthy and whole again. From now on, I plan to celebrate our happy anniversaries; we will have much to celebrate.

“The more you praise and celebrate your life, the more there is in life to celebrate.” –Oprah Winfrey


Tragic

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I’m sitting on the bathroom floor with a box of Kleenex and the door closed so that Claire can’t hear me cry. I just read a Facebook post from someone I’ve never met about someone I’ve never met, and yet we’re all family. We share the tragic bond of loving someone with a rare histiocytosis disease. In this case, it cost an innocent two-year old boy his life.

Since joining this online community when our daughter was diagnosed, this group has been a lifeline for me of information and support. Though I have yet to meet any of them in person, I know more about some of them and their families than some I count as friends. We share in each others’ successes and struggles, sharing information and empathy. Occasionally, that also means sharing condolences when someone loses their battle to one of the horrific monsters that can steal our children and loved ones out from under our noses, even as we maintain vigilant watch.

Though in only two months I’ve already seen too many of these tragic endings, the one tonight hit me particularly hard for some reason. Maybe because he was so young and innocent. Maybe because I’ve relaxed a little lately as my daughter’s condition has stabilized somewhat, or maybe because she’s far away in a hospital four states from home. All I know is I went from doing the dishes to sobbing on the bathroom floor for a little boy and a family I’ve never met. My heart breaks for them. I have nothing to offer except my deepest sympathy and a sincere belief that, somehow, their little boy did not live nor die in vain.

“The life of the dead is placed in the memory of the living.” –Marcus Tullius Cicero


First Step

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This was a big week in the history of our family: a momentous week, a milestone week, a historical week. This is the week we took a giant step toward getting our family back, healthy and whole. While I know all of that, I’ve struggled mightily to see it that way.

In the sixty days since Megan’s diagnosis of HLH, a rare disease where the immune system overactivates and attacks healthy cells and organs, we’ve known that a bone marrow transplant (BMT) was likely in addition to the chemotherapy which saved her life. Chemo is pretty life-impacting, but pales in comparison to BMT. We’re shifting from a two month hospital stay and weekly drives for chemo a few hours from home, to a minimum six month hospital stay 700 miles away. Minimum six months. I’ve been totally overwhelmed since I’ve known that was a possibility. Two weeks ago that possibility upgraded to arrival in Cincinnati this week. It was nearly impossible not to become gloomy thinking of every “last” as we went through them before we left: last dinner together as a family. Last game night. Last belly laugh with all four of us. I know I robbed myself of some of the joy of these moments by thinking about them that way, but I didn’t have the strength to stop myself. My grief at their loss was too great.

As we drove the ten hours toward the adventure none of us chose to have, I tried to use the time to reframe my thinking. I’m going to go crazy if I focus on the losses…I simply have to learn to focus on the gains. And they are there, if I but pay attention to them. As I alternate between home and hospital in different cities, I will get a lot of quality time with each daughter, at an age where that can be difficult to carve out. When it’s just the two of you, more quality interaction happens because you depend on each other more. I can even thank our first hospital “practice run” for teaching me how to maintain a positive long-distance relationship with my husband. An experience like this makes it incredibly easy to ignore the small crap we unfortunately too often get after each other for. And though I can’t wrap my arms around him when he needs it, I can avoid his stressors and be supportive from afar. But most importantly, and the only reason to endure this horrific ordeal at all, we are going for a cure for our beloved daughter. We have known from the beginning that we really would go to hell and back for that.

I’ve learned that many BMT patients celebrate their “re-birthday” as the day their life started again. Because she’s adopted, we missed Megan’s original birthday. We’ll be right there with her for this one, as she gets this new start on the rest of her wonderful, healthy life ahead. That’s truly something to look forward to.

“Faith is taking the first step even when you don’t see the whole staircase.” –Martin Luther King Jr.


Today

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People tell me how well I’m holding up during my daughter’s critical illness. If they only knew the truth.

My biggest challenge in remaining strong during all of this has been the utter loss of control. Control over what’s happening. Control over what will happen. Control over my environment. Loss of most sense of normalcy. It has taken me awhile to realize that I do still have some control, mostly over what I focus on. For a long time, I focused on what I couldn’t control and all of the terrible things that could happen…it was driving me crazy. I got to a pretty bad place before I realized I’d better change it, for my sake and for my family’s.

I’m a planner–a euphemism for a control freak–but in a crisis, you can’t plan. Anything. Only when I hit the wall did I figure out that my strength was really my weakness in a crisis. I am working on developing a new muscle of focusing on what is good, right now, today. It’s a challenge for someone too used to living for tomorrow, but I can already see the upside. My girls see a difference: I am more present with them. I spend less time with my eyes glued to technology. I’m not taking small moments for granted. And, in those small moments of presence, I have found happiness.

“The most important lesson that I have learned is to trust God in every circumstance. Lots of times we go through different trials, and following God’s plan seems like it doesn’t make any sense at all. God is always in control, and He will never leave us.” –Allyson Felix


Fraud

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I have a confession to make to those of you who read my blog: I’m a fraud. Much of what I write in terms of how I intend to live my life is aspirational. I do believe in all of it, but that doesn’t mean I’m actually living it consistently.

If you’ve read very many of my posts, you’ve seen the handful of themes I struggle with. Faith, fear, and doubt are one big, interconnected triangle, while my constant push to become a better human being–focused less on myself and more on others–is the other. Writing about my challenges is powerful therapy, forcing me to articulate what it is that I’m really struggling with. It structures my contemplation, requiring me to come to some sort of conclusion versus denial or avoidance. That said, I often find myself too afraid, too angry, or just feeling too sorry for myself to live up to my own lofty goals.

This is where all of you come in. While the act of writing helps me think through what I need to do, putting it out there holds me accountable to actually do it. I still fail, but sometimes I don’t. And you help me do better. Thank you for the help – I owe you.

“If you want to improve, be content to be thought foolish and stupid.” –Epictetus


Grieving

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It’s astonishing how quickly your life can change forever. I have recently realized how grateful I am that we can not see the future. Ours would have driven me literally crazy and destroyed what happiness I had at the time, had I seen it coming.

Early in Megan’s illness, when we didn’t yet know what we were dealing with, our concerns seemed significant: organ damage, transfusions, a delay starting school. As the weeks wore on and she became more ill, I began to long for that list of concerns. On the darkest day, I watched her deteriorate by the hour. Terrified, I called our family and told them to come to the hospital–now. Praise God, the doctors arrested her free fall just as we got the diagnosis which saved her life. It was a miracle, as were the next few weeks which saw our fighter inch back from the abyss.

As the weeks have worn on, we have often dealt with loss, sometimes daily. News that she not only wouldn’t start school with her friends, but will miss at least the semester. News that she would lose her hair. Round after round of infection. Frightening seizures. Loss of mobility. Potential relapse. Possible transplant. The news that we could be still dealing with this at this time next year. One emotional blow after another…I became shell shocked. We grieved each loss, but when your child is gravely ill, you don’t allow yourself much time for that: you cry–hard–and then you look up, wipe your tears, and ask what do we need to do. Things which a month or a day ago would have seemed intolerable, quietly become the new normal.

There really is no choice but to keep moving, putting one foot in front of another, even when you’re exhausted or terrified. Because it’s your child, and because they’re still here and need you. I’ve now met too many other grieving parents whose loss has a finality to it that ours doesn’t. We still have hope, and we’re still fighting. We may have a long and frightening journey ahead of us, but we will never give up.

“Never, never, never give up.” –Winston Churchill


Home

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After 55 days, we brought Megan home from the hospital this week. One of my good friends told me that she prayed her stay at home would go well. Her choice of the phrase “her stay” struck me, as we don’t generally don’t say that about someone who’s at home. But while my friend is quite right in this case, her perspective–which she got from me–made me wonder if I’ve wrongfully colored everyone else’s view.

Our joy at our daughter coming home is muted, knowing that we’re not done with hospitals. She’s not sick enough to stay there, but she’s still very sick. We have a long discharge list of IV management and meds and lab work and danger signs to watch for and a weekly six hour round trip for chemo until January. Any flare up or infection will send her back to the hospital. And we learn this month if she requires a transplant, requiring another long hospital stay.

Still, we’re very grateful. Some patients with this monstrous disease spend many more months in the hospital before coming home. Some, tragically, don’t come home. This thing is deadly: it has a track record of cutting down healthy teenagers in just days. That our daughter has made it this far tells us that God is not done with her yet.

My struggle since I learned she’d be coming home has been striking the right balance between celebrating and managing expectations–hers as well as my own–that we will likely be going back. I’ve tried to be honest with her through this journey about what’s happening. She’s nearly an adult, and it’s happening to her; she deserves to know. And yet it’s hard. As parents, we always want to protect our kids. I’d love to let her have unbridled joy at being home, but it’s not fair to keep from her that we’re likely to go back.

But I also need to remember to enjoy this time and not be consumed by what may be coming next. We don’t just deserve this time, we need it. So we will eat dinner together as a family and spend time together and treasure each day together at home like the gift it is. And we will remind ourselves that home is wherever we are.

“Where thou art, that is home.” –Emily Dickinson


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