Month: August 2018

I knew Monday was going to be crazy busy…a new job orientation meant getting kids to school early. Already being “on time” is a struggle for me, so being early is a real challenge. Anyway, it got done and the day was on a roll. Suddenly an hour in my afternoon opened up and I knew exactly what to do. Get a pedicure. I had been wearing closed toe shoes for the past week and let me tell you, with this South Texas heat, just having clothes on is a challenge. That’s how bad my toes looked. First world problems, I know!

Just as I turned into the nail salon parking lot my phone rang. Hmm, Mia’s school, wonder what that’s all about? It was the nurse informing me that Mia was having seizures. Now, having been in the seizure world for quite a while I was not immediately rattled. I asked, “How long? Is she convulsing?” The response was not good, she’d had 2 of them, 5 minutes each, and yes, she had full body shakes. So, of course, I abandoned my pedicure plan and I hauled it back to the little town where she attends school. And I was upset. Ok honestly, I was mad. Ugh. I had one hour to call my own that I had control of and now it was gone. Yes, I felt guilty for feeling that way and yes, of course, the feeling was brief- but dang it! I was frustrated and angry that I had once again lost control of a silly hour due to something out of my control… seizures.

You would think by now I’d be comfortable living like this. Starting from the day she was diagnosed with cancer back in 2010, we have been living with “unpredictable days.” Sometimes it was a sudden drop in her immune system or gran mal seizures due to brewing infections or just a really nasty migraine. Regardless, everything changes in that moment and plans are cancelled to accommodate either a quiet day at home or a few days in the hospital.

On a cold dreary day in February as I stood in a quiet pediatric oncology floor miles away from home, cancer taught me a life changing lesson. A lesson in just how little control I really had in life.

By now our family had been living in the cancer world for about a month. It was horrifying. Everything that could have gone wrong had happened. On day one of treatment, Mia was put in a coma just to see if she would even survive the devastating effects that her first round of chemotherapy had caused. After a week in her induced coma, she came out of it, but was a very different girl. She did not speak, only stared off at the walls and when the side effects began to hit- oh boy, they were brutal. She had every single one on the list, including those on the “rare” column that the doctors are required to share with you. All cancer moms know about this list. It’s horrifying to read.

Fifteen days into treatment we found out she had a lung infection….and absolutely no immune system. Within two hours, Mia and I were airlifted to a hospital a few hours away and soon informed that Mia needed to undergo a procedure to extract fluid from her lungs. The catch was that she might not live through this procedure. So for the third time, we huddled around her bed, expressing how much we loved her and how brave she was. Then I watched them wheel her away, not knowing if that was the last time I would ever see her. Ugh. I am tearing up even now as I write this. It was a horrible moment I will not ever forget. But thank you God, a few hours later she was back in her hospital room-alive! Still, every day was a punch from cancer. Every day we waited to see what new challenges she would face. Needless to say, everything was in chaos and out of control

Now here is a lesson I am glad I learned, but it happened in the most horrible circumstance. Isn’t that how it goes sometimes?? We learn the most (especially about ourselves) in the worst times of our life.

So, we were in this hospital and things were so bad. Mia had gone into a vegetative state- she could not walk, talk, show emotion or move her arms, and the side effects were in full force. Due to the intensity of mouth sores, she was also placed on a feeding tube and the pain was unbearable for her. Oh, but that was not the worst part. After her first spinal tap, she stepped into a deeper state of disconnect from us and an MRI showed that the chemotherapy caused swelling on her brain. The options Jaime and I were given: 1) take her home, wait for the cancer to return, run its course and she would die or 2) continue to give her chemotherapy and let it destroy her body and brain.

SERIOUSLY??!! What parent ever wants to make that choice! I think of all the other families who have been forced to make tough choices and my heart hurts for them.

That day was one of the eeriest I have ever experienced. I remember walking with Jaime down the quiet hall of the pediatric oncology floor. It was a cold Friday afternoon and the dreariness outside matched every feeling I had inside, not to mention the not-so-cheery yellow walls that I had been seeing for weeks now. At the end of the hall, we stopped and just stared out the window; I don’t think either one of us wanted to start this conversation. I remember noticing how life was moving along for everyone down on the street below, but for us it was at a standstill. I finally turned slowly to look at Jaime and for some reason, the first thing I asked was: “If Mia dies, who are you going to be?” And while I was asking Jaime, I was really asking myself the same question. If the worst thing that I can ever perceive happening comes, what will I become? Now why that was my first question, I will never know. BUT, it was the most important question I could have asked myself because it led to a clear answer and my first glimpse into feeling freedom. Let me explain what I mean.

See, finding out you have ZERO control over the outcome for your life or your child’s can be so intensely scary. As moms we control pretty much everything about our child’s life, well at least for the first 10 to 13 years- what they eat, what they wear, where they go to school, which doctors will care for them. Being able to make all these decisions can give us the sense of control- so when it becomes glaringly obvious that we don’t have control, (thank you, cancer and epilepsy) we can lose ourselves. And all the things we worked hard to become- patient, compassionate, faithful, trusting in God, generous, soft hearted, can quickly change. Losing control really knows how to mess with emotions.

Trust me, I wish that life was all unicorns and rainbows and that if we make all the right choices and make things work just right (an attempt at control maybe??), it will go easy on us. But no, that’s not going to happen. Life is hard. Life is not fair. Life is not kind. I mean look at all these incredibly brave, young, innocent kids who have battled cancer like Mia- many of whom have NOT been able beat it. Now that is really, really not fair. And yet, if ever visit a pediatric oncology clinic, you know what you will hear? Laughing, giggling and happy chatter. Sure, there will be the occasional cries and screams- but these kids are incredible. They rebound back to themselves. They take the hits, but they don’t stay down.

So when I found myself asking, “Who are you going to be?” if she does not make it or never returns to her happy, lovable old self, I took a deep breathe and thought, Nope, I am not going to lose myself in this out of control situation. I am going to still love God. I am still going to look to Him for guidance. I am still going to be a soft, considerate and strong wife and mom. I am going to work at being the best version of me. Now, I have not had to face the worst thing a mother can face, so maybe it would have changed. When I answered this question, I definitely left room in my heart for a time of anger towards God, life and enormous, unimaginable grief. BUT- I also knew that if I let this out-of-control life I was living cause me to leave the woman I worked to become, then it was all for nothing. Just because I had no control over what life was going to hand me, did not mean I could NOT have control over myself. I knew I was not in control of whether Mia lived or died, whether she would ever be able to walk or talk, if the chemo would bring on more side effects- I knew nothing EXCEPT that I was going to be the best mother I could be for her. That was it. It was the only thing I had control over: who I was going to be for her, for my young son, my stepsons and Jaime. See, they were watching me, and they, too, had their lives turned upside down. But they needed something stable, someone that let them know that when life was out of control, someone would remain in control. For now it needed to be that their mom was going to stay strong and be brave in the face of the uncontrollable. It was not easy or fun. And sometimes I totally blew it and had to start all over again by giving myself a pep talk and refocusing.

The author Lysa Terkeurst puts it like this: “I can face things that are out of my control and not BE out of control.” (Unglued: Making Wise Choices in the Midst of Raw Emotions) Hard to do…but it can be done. I mean seriously, we are women! We are such incredibly strong humans. We run a household, work, grow other humans in our bellies, push that human out and ensure everyone is fed, secure and relatively happy (the teen years are a whole different animal). I mean we do A LOT with so little sometimes. We only get a little affirmation, support, sleep, time to ourselves (like for a pedicure!) and yet we push through. We do everything we can to keep things under control but when things fall apart, we have to be careful that we don’t lost who we were meant to be. Sometimes bad things just happen.

You were the best wife and he still cheated. He still left. You were a great daughter, but a parent still abandoned you. You were a great supportive mom, but your kid seems to hate everything about you or he has made some really bad choices. You were a great support to your friend, but she turned on you. You did everything right at work, but you were still overlooked for a promotion. And maybe like me, you’ve learned just how little control you really get to have. So what are you doing to BE in these times?

How about being brave? Have courage. Remember, that means showing strength in the face of pain and difficulties. We can break a leg and still keep a schedule, but somehow a broken heart, broken expectation, broken family…that can cripple us and turn us into something we actually don’t want to be. It can make us resentful, unforgiving, mean and hateful. Yikes. And that can lead to us making some very bad choices.

So, I knew that as I stood in that very sad hallway surrounded by these young brave cancer patients that I had a choice. I could become forever angry, resentful, full of self-pity and remorse. But that decision came at a cost and I knew it. Here is the price I was not willing to pay: that my 20 month old son would grow up with a bitter, angry mother who modeled what happens when hard times come, that my marriage would eventually deteriorate and it would be the end of our family. It was too high a price to pay.

That same choice is yours. Unfortunately we will all face situations where the only thing controllable is ourselves. So who are you going to be? I really hope it’s brave, strong, faithful, kind and victorious! Because you know what? Many times the bad times are temporary- they won’t last forever. Like last Monday.

After a brief visit to the ER for a CAT scan and some blood work, Mia was released and the rest of this week has been uneventful. Still, I know more of these days will come. SO, you know what I am going to do? Maybe have a 30 second pity party (just being real here)…then tell myself to suck it up and be the best version of me in the situation….even with chipped toenails in my closed toe shoes.

 

 

I could feel the knot in my throat that would in seconds turn to tears. Was this how it would be every year; every first day of school? No, the knot was not because I was mourning the end of summer or that my kids are growing up (sure, those tears come…but let’s be honest mostly we are a little excited, kind relieved, right?!). This knot came as I walked out of the special education unit where I left my new 7th grade daughter who was feeling vulnerable and scarred. And as I drove away I was mad and sad. You probably know those combination of feelings. Then the mantra plays in my head, “It’s not FAIR! After everything she has had to fight for- why this too?”

You see about 8 years ago things in my life really broke. I learned real quick what genuine heartbreak felt like and every day since then has been me figuring out how to heal from the break. So today, it’s like I just bumped the sensitive scar I carry on my heart. It stings and then leaves a dull pain for awhile.

January 11^th , 2010 is a day I’ll never forget. The Salazar’s world changed at 9:30 a.m. on a Monday morning. Our four-year-old daughter, Mia, was very pale, weak, and lethargic. We had been to the doctor a few days before, but she was getting worse.

At the doctor’s office, her pediatrician checked Mia’s stomach. I remember he got a strange look on his face when he felt under her ribs. He said, “Her liver and spleen are enlarged. We need to get some blood work.” In my mind, that confirmed my original, intuitive diagnosis. H1N1 had been all over the news, and I sure this was the health crisis we were about to face. Oh, how wrong I was.

As our pediatrician steadied Mia for blood work, it took four tries just to get a small amount of blood from her arm. After the horrible process Mia fell quickly asleep; meanwhile, I phoned Jaime, my husband, to give him an update on Mia’s prognosis: “They want to run some tests. She may be pretty sick, and I’ll need to cancel my meeting today. I’ll keep you posted.”

I was restructuring my day in my mind, sitting in a chair with Mia on my lap when her pediatrician walked back in. He sat down on the doctor’s stool. A bad feeling began to creep through my body. This doctor never sat down. Now he was not only sitting down but also pulling the chair closer to Mia and me. He also had a sad, worried look on his face.

He inched the chair closer, looking down as he wheeled toward us. Then he looked up, his mouth formulating words whose weight I could not yet feel. “I think it’s leukemia.”

What? My brain jumped to immediate denial. No, it’s not that; it can’t be that. And yet, looking into her doctor’s eyes while Mia lay sleeping on my lap, I knew he was serious. A single tear ran down my face. At that exact moment my phone rang. I looked down, and it was Jaime calling for another update. I handed my cell phone to the doctor and told him to please inform my husband, Jaime. I just knew there was no way I could say the word leukemia. Again, I heard the doctor say, “I think it’s leukemia,” and again the words hung heavily in the air. I refused to let them settle into my brain, to become a reality.

The doctor handed the phone back to me and said that in the next few hours an oncologist would be calling to set up an appointment to see Mia. The appointment would be scheduled for later that day. Already, things were setting into motion too quickly, giving everything a surreal quality.

I looked down at Mia. She was so pale; the bags under her eyes were now so evident to me. She had slept through the last ten horrible minutes that had just radically changed our lives. I pulled her in tighter for a moment, kissed her head, and lifted her to my shoulder. That bad feeling in my stomach had now turned into a solid boulder, and I felt the weight of it through my entire body as I carried Mia out of the doctor’s office. I don’t remember how I got her into her car seat and then drove the few miles to my parents’ house, where we would wait for the oncologist’s call; I especially don’t remember having any feeling, thought, or plan as to what would happen next.

And that was the start of a gut wrenching and still a miraculous journey. Three times I have had doctors lead me to her bedside to say “goodbye” because they were certain she would not live past the next few hours. I still don’t remember exactly what I said that first time; I mean no parent is ever ever prepared for that moment and it had only been 36 hours since I first walked into the pediatrician’s office on January 11th. But one thing I remember whispering in my sweet daughter’s ear as she was fighting for her life. I told her, “You are so brave and you are so strong.”

So, as I drive down the road back home I tell myself the same thing. “You are so brave and you are so strong.” When I get home, I turn on some worship music as I wash the dishes and then tune into a great podcast that will speak life to my soul.  I remind myself of all the times God showed up even while at the moment there’s still a bit of the mad feelings hovering below the surface. But I do it anyway. I remember that NO, she did not die even when I told her goodbye. NO the cancer miraculously has never returned. NO she did not remain an invalid and instead relearned to walk, talk and live a life when doctors say that may never happen. And yet, cancer still broke things. It broke the dreams and plans I had of what my only daughter’s life would be like. So on day’s like today I have to remember there have been so many brave moments. For her of course, she’s been the bravest. But for me as well. Being brave in the face of a broken heart, a broken dream, a broken relationship is hard…so, so hard. Having courage when you can’t control how her life will turn out….or yours.

And so I think of all the women who are in the thick of their brokenness…a broken marriage, a broken family, a broken dream, a broken heart. To you, I would say “You are brave. You are strong.” Being BRAVE means showing mental and moral strength to face fear, danger or difficulty (Merriam-Webster). You can do that! Yes, you can! I have met so many brave women in my life- who have suffered more brokenness in their lives and I have seen them set their face towards that difficulty and keep moving. And you know what it takes to be brave….COURAGE. It’s actually part of the brave definition- showing courage. 

So what will it take for you to be strong in the face of your pain, your difficulty, the piece of you that is broken? Maybe it means turning on some worship music, sharing with a good friend or journaling. I’m doing all 3 today! But do something- you have to CHOOSE to be brave. You have to CHOOSE to have courage.

Life is not going to always go easy on you and being brave leads to greatness DESPITE having parts of you that are in some stage of brokenness- whether it’s a fresh wound, a thin scab or a permanent skin-thickened scar. I bet this woman mentioned in the Bible had her own scars and yet she did what it took to be brave.

“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25. 

Let’s be that kind of woman today! I’m going for it.

Emily Ordeman-Salazar