On Being Strong...

On our way to the ER the night of the missed bleed, with her still head pounding from the pain, Niki told me that she wasn’t afraid to die. She just blurted it out and my heart broke.

We continued to talk about it and I internalized what I really wanted to do: cry.

It hurt when Noah said it me on the way to the ER a few years back. He was only 5 and as pale and lethargic as he was, he looked at me through half-closed eyes and said, “Mommy, I’m not dying.” I looked at him and said, “No, you’re not.” 

And I fought to regain my composure by thinking positive.

It’s so unfair they have to even think of death, isn’t it? But this is their reality. And it is my reality as their mom. 

These are the moments I don’t always share because I wanted so badly to be positive. To me, negative thoughts weren’t productive or healthy. While it’s good to be positive, forced optimism doesn’t exactly allow the emotional bandwidth to process pain either.

But... pain is normal. It’s just taboo to talk about it.

I realized these last few days that trying to spin my pain into something positive, isn’t healthy. I realized that it’s OK to just be in this “negative space” sometimes. It’s normal to be afraid. It’s normal to be anxious. It’s my normal. It’s OUR normal. 

I can’t always be strong. Can you?

Even though it hurt me to hear it, and even though it’s traditionally perceived as negative to talk about death, given their circumstances, it’s very valid and normal for my kids to think about their own mortality.

To be transparent means I should share all facets of my reality, right? Even the uncomfortable parts that may make people feel uneasy. The parts that parents like us — parents whose children live with chronic or terminal illness, parents of kids with special needs, parents whose entire lives grind to a screeching halt when their kids are sick or need advocacy, parents who lost children — may not necessarily feel safe to share. 

Parents like us understand what this “negative space” feels like and why some of us go to great lengths to hide it.

The sleepless nights filled with worry or research...The grief we repeatedly experience from loss of normalcy and control... The fear of the future...The tears that we fight to hide when we are “weak” and shed them while our kids are around...The discussions where you dance around your partner’s feelings so as to not worry them...The hard discussions where you may not always see eye-to-eye on the best plan for your child...at first. 

I want to validate the normalcy all of these feelings and raw & ugly moments because hiding them isn’t healthy. I used to pride myself on how well I could hold pressure inside. I got so good at it that I thought I was invincible. I thought it made me stronger, but I realized these past few days that I’ve been unintentionally showing my kids that they should strive to be superhuman and emotionally invincible, too. 

I was wrong.

There is a word in Tagalog called “mahinhin.” Loosely translated it means to “be modest or gentle or humbled by authority.” It’s a requisite for Filipina femininity. The opposite of being mahinhin is being a pain-the-ass. The frantic mom. The woman who yells when she doesn’t need to. Even when I’m seething with anger or frustration, it rarely comes out when I really need it to.

I’m always careful to not piss people off, especially people who take care of my HemoKids. 

I don’t want the my Hemokids to be mahinhin. I dont want them to be afraid to be human and say what they need or express how they’re feeling. It’s OK to cry and be upset just like it’s OK to laugh and feel happy. It’s part of the human condition to have range in our expressive emotion.

There is no better time than the present to address whatever it is that weighs heavy in our hearts and minds. To say what we want and need. 

We should normalize sharing not only our joy but our pain,too.

I realized these last few days that I can’t possibly be effectively teaching Niki & Noah to fully advocate for themselves while still trying to be the optimistic, mahinhin mom. The mom who doesn’t want to bother the staff when they’re already so busy. The mom that gently asks when I should be yelling and insisting. The mom who tries to be the positive spokesperson. The mom that tried so hard internalize fear, anger, trauma, and grief that when it comes out now...it’s uncontrollable. 

It made me weaker in the end. 

So let me normalize it and say that I hate being in this space sometimes. I hate that I thought I had to be positive all the time. I hate that my kids have to live with FVIId. I hate that Ethan died. I hate that I could lose them the same way we lost Ethan. I hate seeing them in pain. I hate that they even have to think about their own mortality! I hate that I’ve had people openly question me about whether decisions we’ve made for our kids were the right ones. I cringe when people with “normal kids” tell me I’m strong and they couldn’t do it if they were me. 

Forget decorum. You’d hate here it too if you were me. That’s a lot of pressure. 

Life isn’t butterflies and rainbows all the time and it damn is hard being in the shoes we wear every day. There is nothing admirable about it. If you had these cards, I guarantee you’d be able to do it, too. It’s not a spiritual calling or cosmic selection. The strength special needs parents have comes from the same strength you use when your kid has the flu. 

You just double down and do it. Your kid needs you. So does ours.

Parents like us are fighters, but placing all of us on a pedestal because we have kids with special needs only increases the pressure to be positive. To internalize what would make other people feel uncomfortable. I hate that my pride (our pride) makes accepting help feel very uncomfortable...even if we may need it. So we don’t. We rarely ask for help unless we absolutely can’t do it. We. Got. This...so we think.

This is the ugly side effect of being placed on that parent pedestal: It has made us hesitant to accept kindness because now it feels like pity. 

For a very long time I felt like I wasn’t allowed to break, you know? I was repeatedly told that people couldn’t handle it if they were me so why would I allow myself to break? It made me feel like I also needed to be mahinhin with what I shared or risk breaking that decorum. It was a high, albeit unintentional, expectation to meet.

I essentially invalidated my own normalcy. People meant well, but I hardened myself because I thought I had to. 

Like, you’re trippin Tiff. You got this. Thug it out. Everyone says you can do it so why are you having such a hard time? Wtf is wrong with you? Man up. Stop crying. Handle it.

I saw the results of all my years of false positivity and optimism during this hospital stay. It translated to Niki being too shy to ask for ice chips unless I asked for her. Or playing down her pain until she couldn’t bear it anymore. It translated to her looking at me for encouragement before she answered a question. It seems insignificant, but if you read between the lines, it is. That is definitely NOT what I wanted for her. And I definitely don’t want that for Noah. 

We’re working on it. 

But as I sit here and type this, I also realize something beautiful happened when she wasn’t afraid to share that she was thinking about death. There was something special about Noah doing it, too. It means they intuitively know that they have a safe space to share the range of their emotions. And as negative and scary as it may sound to people who don’t understand, somehow despite me and all my mahinhin-ness, they have enough confidence to speak out loud, instead of holding it in. (Most of the time.)

I think they get that trait from their father.