I just don’t know.

Today was a craptastic day at the hospital.

We went in for our physical therapy session.

I told our therapist that I was a little worried because Evan’s g-tube button looked loose.

We had an emergency trip to his GI doctor….who consulted with the surgeon who placed the tube….who sent us down for a flouroscopy procedure to check on his tube placement to make sure it was where it needed to be.

What?

Didn’t I just post a picture on Facebook  about how good Evan was looking?

I mean…

I just don’t know..

When will I ever find a normal to live by?

The flouroscopy was awful.  They strapped Evan onto a gurney, spun him around like a lamb a spit, while he screamed and cried.

Luckily – the tube was where it needed to be.  If it wasn’t, we would have to go back into surgery.’

Ugh…

So…we have a long 6 weeks for the healing of this thing before it’s truly secure and I don’t have to be overly worried about it coming out during this healing time….and possibly facing a surgery if it does happen.

Double ugh.

I lost it.

The radiology doctor, God bless her, probably had no idea she was going to face a hysterical mother during a very routine and simple procedure.

She just looked at me and said, “It looks fine. Everything’s fine.”

I looked at her while holding my naked boy…”Everything is NOT fine.  You have no idea what we have been through these past 10 months.  Two heart surgeries. Three surgeries two weeks ago….my son has a tube going into his stomach to feed him.  It’s not all fine!”

She literally looked at me again and said, “Well…everything looks on x-ray.” And walked out.

At this point, I was just upset and angry…no tears from me.

As soon as I walked out the door towards my car, I just let it all go.

Every tear.  I ugly cried 50 yards to my Yukon.

I cried for every bit of normal I had pre-Evan.

I cried for every bit of normal I’ve had post-Evan.

I cried for me…feeling sorry for my sad life.

I cried for Evan…feeling sad for all he goes through and has gone through.

I cried because I was hungry and didn’t have a snack.

I cried because Evan was hungry but I wanted to wait and feed him at home.

And then I stopped.

I stopped when I saw a mother open the back door of her wheelchair accessible van and use a “lift” to get her child out of the car.

I watched as the child in the wheelchair, drooling onto an adult sized bib, empty eyes, expressionless, sat in his wheelchair as his mom and nurse took him out of the van.  She lovingly wiped the drool coming out of the side of his mouth and smoothed back his hair.

I stopped when I saw a young girl and her mom walking past me.  The girl with a do-rag on her head.  Bald.  Probably from chemo. Smiling.  Laughing. What cancer was she fighting?

I stopped.

My life is hard.  I need to say it out loud.

I’ve always just said, “Any mother would do what I do for Evan.”

But, I’ve been around the children’s hospital to see too many children neglected to know…that’s not always the case.

My life is hard. This road I’m on…sometimes I just don’t know how to put one foot in front of the other.

Sometimes taking it day to day is overwhelming.

I’ll never know a normal again that doesn’t include trips to the hospital or doctor visits.

I’ll never know that normal.

And I don’t want to.

My life is hard. It’s extremely taxing….on me, my marriage, my friendships, my relationships.

This life of having a special needs/medically fragile and complex child literally sucks the life force out of me some days.

I don’t want to be this person that blogs about how hard life is, how much my child has gone through…I don’t.

I want to be the person I used to be.

The person that would write about laughter, about nonsense, about the stuff in life that is light…and normal.

But, I’ll never be again.

I’m changed.  I’m glad for it…most days.

I’m glad for Evan…everyday.

Just not for the life he is faced with.

I saw the lives of other children in the parking lot today…that made me stop my tears..other lives of moms who are facing their “normal.”

A normal that I know for them is hard.  A life I know for them is taxing.

I don’t know why congenital heart disease exists.

I don’t know why kids get cancer.

I don’t know why the littlest of angels on Earth have to fight the biggest battles for their life.

I just don’t know.

And it hurts me.  It hurts me for our children fighting through each surgery, each treatment, each procedure.  It hurts me for the parents, as we sit and watch all of this happen…helpless.

It’s an awful world to be a part of….

But it’s a world we’d live in every single day for the rest of our lives if our children would be in it.

It’s a journey I’ll force myself to take the next tired step…if I knew that my boy would still be by my side.

It’s a life I will gladly live – every single day – just because it means my boy is still here where my heart wants him most.

That’s the only part of this normal I’m absolutely sure about.

 

Comments

  1. I’ve always thought “normal” was like taste in art. It all looks and feels different to every single person so how can anyone judge it as being right or wrong or pretty or ugly.

    You are a brave woman and you have tremendous trials ahead of you. From what I can see of that smiling adorable face on Evan, you are doing a wonderful job. If blogging about how hard things are helps to alleviate the stress I say blog. Little things like elves on shelves and kids bouncing to music and messy faces and flirting with nurses ARE the light things in life. You are working them in there along with the grief like little rays of sunshine among the clouds. They always make me smile.

  2. My hero. You are always in my heart. Extra hugs for Evan.

  3. Kara Restivo says:

    Very beautifully written, I’m speechless! If it gives you any comfort at all know people are thinking of you!!! Prayers always:)

  4. Hi There, are you part of the “Pediatric Feeding disorders/ FTT/GERD/and kiddos with feeding tubes group” on FB ? It is a really helpfl site for kids with G tubes and issues with it, the moms are as close as our Heart Mamas group. I loved it when my son was on the NG and almost on the verge of the G tube. There was this interesting post and I thought I could just pass along. Just a note that we don’t have a g tube so I don’t know all the details, but her pictures in the post looked amazing results, so I thought you can see if it’s helpful at all. “http://squaregoods.me/?page_id=2622

    Always keeping your Evan in my prayers. He is so strong. Keep it up mama, you are too 🙂

  5. Oh Czarina! {{{HUG}}} I have been there and still have those moments from time to time. This journey is not easy. Praying for you!