Crying over coffee

I burst into loud sobbing tears in Starbucks.

I had been avoiding going home. Greg was taking a sick day to care for our kids. I had spent the previous night in the Emergency Room with Raphael. I’d forewent so many recent potential earning days caring for my sick baby that my measly December paycheck will barely cover the last few weeks worth of hospitalization co-pays and new meds. So I gulitily justified that it was Greg’s turn and was stealing myself some solitude before the hectic bedtime routines ensued.

As Greg handled dinner, I killed time at the café, too distracted to work and reading a sunny blog I love to hate.

I was tired. That’s a vast understatement, but “weary” and “worn” are not quite it either. I was emotionally supercharged with the energy compression that comes after battling one more session of IV, wires, meds, and crying.

This time, again, my baby’s X-ray did not (thankfully) show pneumonia but that darn crackling sound in the lower left quadrant of his lungs made everyone with a stethoscope worry.

A pulmonary clinic visit had turned into a long, long night.

Raphael feels terrible on the way to his pulmonologist

Raphael, sick, on the way to pulmonary clinic

I am actually glad Raphael was sick at Thursday afternoon’s appointment. Finally, the doctor could see what happens when Little Dude gets a cold instead of me just describing the sound of his rapid breathing (which, by the way, sounds like air being sucked, loudly, through a straw crammed full of wet cotton, that is, except for the scratchy gulping gaps every 20 seconds where nothing goes through at all). It was like going to the mechanic and your car actually does make that funny sound you can’t quite describe.

Even though Raphael amused with his sign language and gave the doc his winning smile, his racing heart, drought-stricken lips, and puffed eyes gave away that he was low on fluids and overdrawn on effort to oxygenate his blood. All morning, my boy had been burning hot and pouring out his stomach contents from both ends.

What happens is that as he labors to breathe, his little diaphragm works so hard, and so much pressure builds in his stomach that everything gets pulled out of him with lung exertion. He pukes, and sometimes blows out his diaper, over and over again.

I’d booked the appointment because Raphael was not getting well enough since his overnight stay at Children’s Hospital on the eve of Christmas Eve and I kept having to give him rescue meds, a bronchodilator, to open his airway. He had been waking more at night, needing to have his nasal passages sucked clean. He had been snoring increasingly louder while angling his head back at an unnatural angle to pull in air. I’d been wondering whether we should put him back temporarily on an oral steroid to reduce inflammation and give his lungs more opportunity to heal. I wanted to prevent a simple cough from launching into the vicious asthmatic cycle that keeps happening.

Thanks to someone’s cancellation, it took just a few more days to get my boy seen at the pulmonary clinic at Children’s Hospital. Meanwhile, his condition deteriorated.

As I packed the diaper bag for the appointment, I had a premonition that we’d be invited to stay, and I shoved my toothbrush, a Clif bar, and extra clothes into a bag, just in case.

Sure enough, Raphael’s pulmonologist wanted to admit him. I haggled, and we agreed to see the ER physicians downstairs, instead, first.

Guess what? We ended up with a scrip for the oral steroids I’d called about two weeks before.

Rapheal on oxygen, IV, and pulse ox in the ER

Getting pumped with IV fluids helped, after it hurt, both of us

But none of that is actually what made me cry in the coffee shop.

All this medical intervention, and juggling priorities, and finding emergency childcare for Raphael’s brother leave an impact. At home, tempers are short. Hasty words sting. Sleep deprivation distracts.

The nagging worry that my son’s health could too easily go the wrong way – that he could die – breaks my heart and strengthens my resilience at the same time.

It brings me to a place that’s introspective and curious about the future. I review all that’s happened in the last two and a half years since Raphael came like watching a familiar timeline of dramatic peaks and dips unfold in my mind. And I just can’t make sense of it.

I daydream about having someone to just unload it all to. I ache for somebody to be kind to me.

Feeding the numbness with a hot drink and the Internet is what I was doing as I stumbled upon a photograph on that blog I mentioned earlier.

The image: a beautiful, young couple standing at an altar in wedding attire. The faces of the clergy around them beam in the way I, and almost everyone who meets him, look with amused admiration at my son. The bride and her groom have Down syndrome. It’s nearly imperceptible. The image strikes me. It reduces me to tears.

I’m a mama to a darling, sick little boy, and this is but a moment, I hope, in his long life, that’s filled with everything a mama wants for her boy: love, companionship, fulfillment.

Even good health.

I need to believe that’s possible.

Raphael thinks the call device is a phone

Maybe he thought he was calling Daddy, not the nurse

Wedding image credit: Kelle Hampton’s shared photos

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Down syndrome, Reactive airway, Sleep Deprivation and tagged , , , , , , , . Bookmark the permalink.

4 Responses to Crying over coffee

  1. Deborah Peckman says:

    I wish I could take away Raphael’s pain. I love that little boy so much. And I know this must be such a difficult time for him and you and the whole family. Sending all my love and postiive, healing energy for a speedy recovery and lots of sound sleeping for everyone, hopefully in the very near future!!

  2. Patty Love says:

    Heartbreaking. Yet also uplifting–you are stronger than you know. ❤

  3. Dear Elizabeth,
    I am too far away to help, but I want you to know that I am following your blog and feeling both your pain and your occasional joy. Keep writing and hang in there as you try and make sense of the gift of Raphael. Love to you, Greg, Elijah and Raphael.

  4. Pam Mellskog says:

    Hi, Elizabeth.

    Honest, tough stuff here.

    Thanks for being brave enough to write about the inside parts of difficult day.

    I’m hoping Rafael’s health improves with the weather… I pull for you in prayer!

    PM 🙂

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