The Little Things

I’m sitting here watching my boy finally sleep after a rough night of sneezing, coughing, sucking on his hands to find comfort for teething.

Such a little thing in the grand scheme of things going on with Evan.

But, its the little things that are the big things.

It’s ironic – that something that is so routine – such a part of the process of growing up – like getting teethe, getting your first cold – is something that is not routine in my new world as a heart mom.

I can’t believe I’m sitting here crying.  I am watching his breathing and his oxygen monitor almost as closely as I did when we were inpatient.

Over teething and the sniffles.

But, I know better.  I know that these little things can turn into big things so quickly for my heart baby.

My sweet boy, who I just so desperately want to have something go easy for him, has now become my obsession for the next 48 hours or however long it takes him to get back to him.

Every sneeze – my heart stops.

Every cough – my stomach turns inside out.

His touch that feels a little warmer – causes my mind to spin with every scenario ranging from a sleepless night yet again to another lengthy hospital stay.

These little things that we obsess over in the Heartland – the washing of the hands, the getting vaccinated, the non-smoking, the little sniffle, the little cough, the tiny tummy ache – all these things so that the little things don’t turn into big things.

Some of you are probably reading this thinking, “Well…it’s probably your fault, Czarina.”

And you may be right.  I probably shouldn’t have let Iz near Evan when she had a cold.

I probably should have made her wear a mask on vacation.  Or better yet…just canceled the whole thing.

Or maybe he’s in so much pain and this is just kind of par for the course because of his cleft palate.

Or maybe he just caught something from somewhere because he wants to put everything from here to eternity in his mouth.

But, I’ll take the blame and be the cause if that means he’ll be ok.

It wouldn’t be the first time I blamed myself for something being wrong with Evan.

I’m not looking for sympathy. I’m just giving you a bit of insight to how I and some of us- us Heart Mamas – feel.

Helpless.  And sometimes taking the blame for something that probably isn’t our fault to begin with makes us feel a little better (and a little worse) because at least there’s an explanation for the “whys” that haunt us everyday.

So, I sit here, watching the monitor.  Check his breathing every hour.  Check his vitals – temperature, pulses. Count wet diapers.  Log all the numbers.  Obsess over every drop in his oxygen saturations…obsess over ever little thing.

Another little thing….ok maybe a big thing…but how’s my boy going to learn how to eat.

Yes – my boy doesn’t know how to. I took that for granted with Iz.  She took to the boob, the bottle, food so naturally.

My boy doesn’t understand hunger and the pains that go with it.

The tummy grumble he has in the morning he associates with getting sated by his “other mother” aka his feeding pump.

The connection between putting milk in his mouth and filling that need for food hasn’t been established.

So – we’re working on that.

And he’s teething.

So, he doesn’t want anything in his mouth except those delectable fists.

And he pulled out his last feeding tube last night in his sleep and our supply company is a bunch of dimwits that didn’t ship our supplies on time – even after I called for the past week to verify they shipped.

So, today.  I get to try and figure out how to feed my son who doesn’t know how to eat, what eating is, in a mouth that is trying to pop out teeth, from a mother who is desperate to give him nourishment and medications in a way that should be “no big deal.”

So much of our life is working on those “little things” that are so monumental.

Because…really…they’re big things.

I’ll get on my soap box and I’ll take the risk of this post being “preachy”.

I ask you to hug your children tight today.  Hug them and kiss your healthy kids.  Thank God for the whining and crying of teething – because at least those teeth will come in somewhat normally and not in every direction like my Evan’s (which will probably have to be pulled by his plastic surgeon before his cleft surgery…sigh).  High five your kids when they whine because they’re hungry – because at least they know and understand hunger and how to satisfy that need.

Don’t take for granted all those little things that come so natural – are part of your every day – that you may complain about.  Just please for this one minute – complain the rest of the day because I’m sure I’ll be irritated by Iz asking me for a snack and for a drink every 10 minutes until I give her one – but for just a second….

Stop and be thankful for those little things…

Because to me and the Heartland…

They’re the Big Things.





  1. Oh, I feel for you 🙁 Beautifully said how the normal “little” things can cause such anxiety! I am praying these stay little (the sniffles), and I am praying for you.
    <3 sister to <3 Sister

  2. Praying for you and Evan! Thankful for the little things for sure. love you!

  3. It’s such a struggle to figure out how to feel about the “normal” things when you don’t have a “normal” baby.

  4. Please don’t blame yourself for his cold. It happens…..and it has happened to all of us heart moms. Logan used to just catch stuff out of thin air and for no particluar reason. It is stressful worrying over every little thing with these kiddos. I def feel your pain. Keep your chin up dear friend. Praying for happier days to come your way soon and for everyone to be healthy again!