Guest Writer: Tina Santos

the mountains and water from tina santos guest writer for my second half self.

With time comes healing, but time can be a mother fucker too. I always thought if I could prepare, that would be better than a sudden death. The curse to that is living with anticipation anxiety and ambiguous grief. Is it the next seizure that takes my little 6-year-old out? I guess neither option is a good one.

I pray every night that she’ll be awake the following morning next to me. They say having a severely disabled child is not for the weak, but it’s not like I had a choice. Who’s “they,” anyways?

Here I am again with 4:00 a.m. thoughts. I haven’t told anyone, but I’m getting good at noticing the patterns leading to death in the disability community. Many of them begin with contracting viral illnesses one right after the other. Once that rate has increased, you’ll helplessly watch the family grasp for any sense of hope for a miracle, and then posts go quiet.

I don’t mean to sound insensitive because I do follow these families’ journeys, and my heart breaks for them each time. Their lives matter, and so do the details. My brain analyzes life as if it’s a science experiment, and then I apply it to my own.

I know the words and phrases to look out for from providers, such as quality of life, hospice, or SUDEP, sudden death in epilepsy. Most recently, we’ve been discussing physiological versus neurological conditions and the “if then” statements.

Each year, I witness my daughter struggle a bit more than the prior. But like the other parents, I will never stop hoping for nothing short of a miracle for her.

Quality of life for end of life is the hardest decision to make for your loved one. Having to formulate their potential thoughts and feelings so you can honor them before your own. These decisions are heavy. So, I come back to the basics of living in 5-minute increments at a time because anything is possible for 5 minutes.

Sometimes I wonder if I need to go back to therapy to brush up on coping tools I learned just 3 years ago. The public wants happy stories. They want to bask in positivity and inspiration, but what happens when that’s not reality?

I’m literally just over here trying to keep my daughter alive another day.

With keeping Olivia alive comes my brain adapting in ways I never thought possible. I’m an observer everywhere I go now. I walk through the door, and I immediately scan the room, a skill I’ve sharpened since my daughter’s birth.

The voices in my head count the amount of people I see from wall to wall and possibly don’t see. I note how close the quarters are by eyeing the perimeter, nearest exits, and windows for ventilation. But most importantly, I listen for the red flag sick symptoms of others. I can do this in less than 30 seconds flat.

People who don’t know us think it’s post-COVID residual. But this is special needs mama life.

I am in charge of dictating what is worth the risk and what is not. Whether you’re in the disability community or not, the topic of quality of life for end of life is something we all will go through at some point in time. Some of us a little earlier than others.

Like my friend Bri has said, “There’s no owner’s manual for this.”

As I rock myself in the squeaky hospital recliner, in a room filled with sterile equipment and walls painted full of forest animals, I mentally go down my checklist. Where have we been the last 7 days? Was anyone sick? Did I miss something? Could Olivia actually be ill despite the negative swab result?

I shake my head back and forth, realizing the answer is no to each of those.

We are here because her body simply can’t breathe well anymore on its own when she sleeps.

I’m patiently waiting on the specialist to come into her room to discuss surgery for her airway. A topic full of discussion for over a year now between us both. Patience means I’ve had the last 8 hours with my thoughts, God, and Google because that’s how quick a hospital process moves.

It’s like sludging through a Tough Mudder course with bands wrapped around your limbs, and right before the finish line, everyone yanks on them so you get just close enough to the end but don’t quite make it.

Finally, I spot him outside the room, gearing up with PPE, getting ready to enter safely. He waves with a smile. I wave back as if we’re old friends meeting up for coffee.

We discussed the previous pre-planned surgery now evolving into an emergent one requiring an earlier date. He did his job well, notifying me of all the risks, alternative options, and outcomes. Some of which I’m not yet ready to share.

They’re options that Dan and I have disagreed upon in the past. When having a supportive partner involved, that means we both need to decide on what’s best for our daughter. It’s two differing opinions on how quality of life is defined.

But how can a parent ever think of letting go? Who put us in charge of calling “when?”

The day is weighing, and I want the noise of decision-making to stop. People are concerned I’m isolating, when all it truly is, is processing.

Maybe I should check in with other families online for support and prayer. But I don’t.

I don’t want to admit we’re “there.” There in the midst of uncertainty yet once again.

I receive a ping notification on my phone with optimal timing, advising me to “be kind to myself on the days that feel heavy.” It’s geared to pull me out of the emotional floodgates, but I’m too far past in the moment. What was meant to be encouraging is now raising more questions.

Is this just another heavy day? Will I sense when it is?

This mama bear would go to the ends of the earth for treatment for her children. But as I’m learning, even that strong statement can now become a disservice.

This isn’t just our family story that I’m sharing. It’s food for thought regarding quality of life for loved ones.

How far will you go in the end to keep your loved one on earth?

Tina Santos

Hope for HIE