Selflessness and Seizing the Moments with Childhood Chronic Illness

by Leila on February 9, 2012

When you have a child who has chronic illness and chronic pains it breaks your heart to hear her utter, “I’ll be fine. I’m just sad if anyone misses out because I’m always sick.”

My daughter told me that twice last week… and her being so selfless and worrying about others when she is missing out on something amazing is truly eye opening.

For the first year my daughter was planning on participating in the school’s Talent Show. She worked her little butt off for this. Every year we participate in Ondo Dancing in the Japanese Obon Festivals with friends. It’s a big part of our summer kick off traditions. She loves Ondo! She decided with two of her friends to perform the dances for their school while dressed up in Yukata.

This was a big deal for her. It was the first time we committed to this event because it sucks when she can’t follow through when she has flare ups.

It’s always so unpredictable.

At first I thought it was a gnarly stomach flu that was going to beat us all up for a day. No, it was a gastro intestinal issue that is common for her but this was really bad.

She was in so much pain that walking hurt, she was getting dizzy spells and extremely fatigued.

Her biggest concern was not being there for her friends or if the performance wasn’t going to go as smoothly with one missing. She wasn’t sad for herself for missing out. She was sad for letting them down and any upset that could cause them.

On Saturday I was invited back for a Blogger event at Knotts Berry Farm which is one of our favorite places to go. When my daughter realized that she wasn’t going to feel up to it she began to worry that I wouldn’t be able to go because of her.

I do not make a big deal out of things changing or express upset over it. I’ve canceled night’s out, family gatherings, playdates, work obligations and many many things when she needs me and we make the most of it.

It’s just how our life is and her health comes first.

It’s just me here for her and I’d rather be here for my daughter than anything else. That is what we both need.

She insisted that I went. The plan was for her little brother and I to go and she would sleep in and meet up with us later with a friend if she was able. I knew if she was able that we would need to take it easy and go at her pace.

She made it for a few hours and we made the most of it. She is a trooper. She powers through things that most can’t and I am proud of her for that as well as thankful that she knows her limits.

Maybe I seem like a terrible Mom to let my kid go to an amusement park after days of feeling ill. But, it’s not a cold. It’s not something that is going to go away. This is her body and a cycle we adjust to. She can go weeks of feeling wonderful and then weeks of feeling horrible.

Sometimes her windows of feeling great are a couple hours.

She had that window on Sunday and it was a beautiful day. She just wanted to be out in the sunshine and garden.  I love that she embraced that moment.

In those windows of feeling amazing I want her to do what makes her heart soar and forget, just for a moment, that she gets sick.

About Leila DontSpeakWhinese

Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.

Comments

  1. hmm, wonder where she gets all that incredible strength from?
    You are both amazing …
    By Word of Mouth Musings recently posted..Wordy Wordless Wednesday Feb 7th – We Need to Fight CancerMy Profile

    1. Leila says:

      Thanks so much :) And same goes to you. Genuinely!

  2. JMA says:

    It’s hard to get me emotional, but this post did it. You and your daughter seem incredibly strong. Much respect…

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