When Waiting Is The Only Option (special needs motherhood)

I sat, holding my son’s cold hand, praying without many words.

Please.

Help him.

Heal him.

Please.

Help.

After several days of increasing pain and stomach trouble, I finally made the decision to take my boy into the ER. I wanted to take him sooner, but the doctor told me he wasn’t in immediate danger. He told me to wait it out.

So I waited. I waited through his tears and obvious pain.

When we did go to the ER, I told the attending what I thought it might be. She smiled at me and said, “That’s highly unlikely. It’s most likely the bad stomach flu virus we’ve been seeing so much of. We will do the tests though, don’t worry. If it is pancreatitis, we’ll know. Right now, let’s hook him up to an IV and wait.”

So we waited for test results. I waited, assuming I was being overprotective and predictably hyper-vigilant.

I have to stop thinking it’s always the worst. His symptoms can be explained in so many different ways. Don’t be that mom,” I thought to myself as my son listened to Harry Potter on audio and tried to pass the slow passage of ER time.

When Waiting is The Only Option (special needs motherhood) #specialneeds #chronicillness #specialneedsmom

 

It only took a few seconds for the tone to change.

The results came back. It was, in fact, pancreatitis, as I had suspected.

And it was bad.

I knew it because the attending looked so intense.

I knew it because the nurse began soothing my son and speaking to him with a completely different bedside manner.

I knew it because they gave my son morphine immediately.

When they called the ambulance to transport him to a hospital nearby with a pediatric ICU, I reviewed the last few days in my mind. Had I done enough? Should I have been more warrior mom-like? Had his doctor done enough? Should he have ordered extra tests? Was the ER staff doing enough?

Every single answer was realistically yes – we had all done the very best we could under the circumstances.

No one had failed my son. We just had to wait for his body to really show us what was going on, no matter what a mother’s instinct may or may not be screaming.

Sometimes, we just have to wait.

When Waiting is The Only Option (special needs motherhood) #specialneeds #chronicillness #specialneedsmom

When Waiting Is The Only Option

There’s been a lot of waiting in my life lately.

Waiting to see if the meds will help. Waiting for the next doctor’s appointment, therapy or tutoring session.

Why are so many things so dependent on the passage of time?

I don’t like it. It goes against my nature. It goes against my mother’s heart.

I want answers. I want progress. I want to know how it is all going to go.

When Waiting is The Only Option (special needs motherhood) #specialneeds #chronicillness #specialneedsmom

One of my dearest childhood memories is of my grandma, washing dishes and singing a song I only heard her sing.

Que será, será
Whatever will be, will be
The future’s not ours to see
Que será, será
What will be, will be

Even as a child, it bothered me.

It seemed a bit like giving up. I was taught that if we work hard enough, try hard enough and even pray hard enough, we could make things happen.

My grandma’s song, sung with a quiet surrender, seemed the antithesis of everything I wanted to be true about life.

When Waiting is The Only Option (special needs motherhood) #specialneeds #chronicillness #specialneedsmom

Waiting And Special Needs Motherhood

My son was released from the hospital a few days before Christmas with a list of requirements for after-care.

That night, we played Apples to Apples as a family. It felt good to all be back together again around our table.

Usually, when we play this game, my youngest and I team up to help him with reading all the cards. But on this night, he wanted to play alone.

“I can do it,” he said.

And he did.

After seven years of reading practice and sight words games and tears and more reading practice and more tears, he read actual words in an everyday setting, independently and well.

I had tears in my eyes the entire game as I felt a certain comfort flood through my veins. I found myself humming under my breath,

Que será, será
Whatever will be, will be
The future’s not ours to see
Que será, será
What will be, will be

 

I am beginning to understand – waiting is not the enemy. Surrendering to the passage of time is part of life, a necessary part of life.

It is in the waiting that we choose to despair, to rebel and to fight or to believe, to hope and to love.

Sometimes, we just have to wait.

 

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8 Comments

  1. My baby boy, only 2 months old, is in the hospital now. NICU at birth, back to PICU a 5 weeks. We’re in a rehab unit now. So many tests, so many unknowns. Thank you so much for this article. Perfect timing, and something I truly needed to hear.

  2. Lucy Sardi says:

    Shawna

    Thank you for sharing your heart. I will keep you guys in prayer. I too can relate to the waiting. My now 13 year old dyslexic learner began reading at 9 years old. You are a sweet soul, I have attended one of your lectures a few years ago at Great Homeschool Convention. The Lord knows your heart. I pray his peace surrounds you in 2018. Lucy.

  3. Oh Shawna, my heart broke for you and your boy reading this. So glad he is back home with you and yeahy and super mega well done to Mr Reader.
    Waiting is a hard one, lots of thoughts to you and yours.

    1. Thank you so much, Janine. I’m definitely keeping him close.

  4. april faris says:

    I am so happy for your son and you! It brought tears to my eyes that he could play independently during the game of apples to apples! That is such a huge milestone and accomplishment!!!!
    I will be praying for him and you as he recovers.
    Happy New year!!!

    1. It was the best game of apples to apples ever, I’m sure of it!

  5. Medical professionals need to realize as parents we know our children better than anyone.
    We become attuned to their needs for the most part. Not sure if you had blood work initially or not.
    If your son is on any drugs some cause side affects as serious as the pancreatitis .
    the pediatricians need to know all the drugs their patents are on.
    I am a mother of two young adult women with autism , developmental disabilities and mental illness.
    Both have had serious side affects to medications. My eldest had her gall bladder out at age 24 r/t
    altered lipids profile . She had the stones awhile. The surgeon said I was right to push the surgery , while everyone told me to hold off. I just felt the pain was causing negative behavior or she was not listened to when c/o pain. You have to go with your gut, must educate others about your child and challenge the doctors . It is so important to have a collaborative relationship . I wait, but plants seeds
    of knowledge also and question . I am that hypervigilant Mom.

    1. It’s so true. In this instance, I didn’t feel dismissed – the doctors were cautious, but not negligent. We still caught it early, because they listened to me. If they hadn’t, it could’ve been so much worse.

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