Being a parent is hard under the best possible circumstances.  When you add a few hills along the path, some days are unbearable.

This past week, Brian had an episode.  We were out running an errand when he fell asleep.  I didn’t want to wake him, so I took the opportunity to feel nostalgic and drove through the neighborhoods where my grandparents grew up.  After sleeping for a short time, Brian woke up screaming, kicking his legs and saying, “It hurts.”  It looked like he was trying to pull his knees to his chest.

When this happens, there is nothing I can do to make him feel better.  Whether I am holding him or he is strapped in a carseat, he will writhe in pain, this time for over thirty minutes, and then suddenly stop.  Once he stops, his poor body seems exhausted and sometimes he falls right back to sleep.

While he is screaming I feel like the worst mother in the world.  I know that what is happening is not my fault, but as a parent, I don’t want my children to EVER feel pain.  Aren’t we supposed to make our children believe we live in a sunshiny world with nothing but kittens and puppies?

Of course I am dripping in sarcasm.

I may not be able to make everything better right now, but I am trying.  These episodes are exhausting for me, too.  When holding Brian doesn’t work, I try to drive around, hoping the drive will lull him back to a peaceful sleep.

On top of the random episodes, Brian is not sleeping well at night.  He tosses and turns, and sometimes wakes up crying.  The other morning he woke up saying, “Mommy, where are you?  Mommy, where you go?”  I was lying next to him, but in his panic, he couldn’t find me.  Once I wrapped my arms around him, he calmed down, but a couple hours later he woke up crying uncontrollably.  I was having trouble understanding him as he screamed, but eventually realized he was asking for nuggets.  Brian has not eaten anything but formula in almost five weeks.  I only can assume he was dreaming about nuggets, leading to his outburst.  I gave him a bottle and helped him fall back to sleep.

When Brian doesn’t sleep well, I do not sleep well.  I also find myself staying up too late just to watch a show by myself or read a little.  I know that I should go straight to bed, but sometimes it is hard to be “on” all the time.  Staying up to watch a movie that is not cartoon based or catch up on Criminal Minds, is my time, and I value it beyond belief.

The combination of neither one of us sleeping well came to a head on Sunday.  Both of us were tired and cranky.  I am beyond grateful to friends who attempted to lighten the mood and distract us with outings.  Brian was able to bottle feed a goat and throw food to monkeys and a raccoon.  This seemed to brighten his mood a little.  It took a Red Bull and coffee to perk me up and see the humor in all of it – the humor being Brian was about to take a long, late nap, meaning he would be up most of the night.

IMG_1990                   IMG_1992

During these moments, I know I am short with Brian and that I become frustrated with his meltdowns.  I also know it is not his fault, which is why I end up beating myself up by the end of the day.  I wish I could pretend that I am some crazy super mom who never yells at Brian or reaches a breaking point, but that just isn’t true.

Luckily, the rough days are few and the days of chasing each other, tickle wars and holding him upside down while I do squats and he giggles are the majority.  Even during the hardest times, his smile reminds me of the bigger picture and how much I love him.

My love for him is why I have been living away from my family for three months and doing everything in my power to fight for him.  It also is why my frustration grows when I see his tiny body covered in another rash.  Right now the rash is faint, but my eyes are trained to see it.  I hope it doesn’t grow to something worse in the next couple days.  On top of this, I have no idea what caused it.  Maybe it was being around the animals, or running in the grass, or maybe there was some cross-contamination I didn’t catch.

Regardless of the cause, it stresses me out.

I also am stressed by what being on Miralax is doing to my poor boy.  It scares me to see what his bottom will look like after I give him a GIANT dose on Wednesday to help clean him out (right now it is raw and bleeding on only a half a capful a day).

As the days before Brian’s endoscopy and colonoscopy dwindle away, my stress level grows.  I want nothing more than to receive some answers to what is happening.  It sounds crazy, but I need validation.  I need to know that all of this was worth it.  I know that for Brian’s health it is worth it, but I need to know crossing the country was the right thing to do.

All of these feelings and fears are normal, and I know that, or at least my rational mind does.  But those who know me know that I am REALLY good at stressing over anything and everything.  So no matter what anyone says or tries to rationalize for me, I will continue to stress through this week and most of next until I receive the biopsy results.

I will continue to push forward, and remind myself day after day that while being a parent is hard at times, my baby boy makes every moment worth it.



One thought on “Hard

  1. You are such an amazing mother and strong woman. Sometimes we need those late nights to help keep sanity. Even if it’s an hour past your “bedtime” you need you time as well so you can be “on” when needed. Hang in there. Love and prayers to you

    Liked by 1 person

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