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To the Parent Who Can Never 'Get Used to' Their Child's Chronic Illness

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For 17 years I’ve cared for my child with chronic illness, although I’ve been a mom for a bit longer (21 years and seven months to be exact). I was a newbie to this mother thing then, and my first child was healthy.

My first experience of the overwhelming emotions one feels for their child came to me when my son was only two days old. My baby boy had brick dust urine. I knew this was because he had not been fed. It was because my breast milk was taking its time coming through. I decided to give him a bottle — he was a big baby and he was starving, I could tell that by the crying. Being young I had up until this point just taken the midwives’ views on bottle feeding.

The scary midwife came up to my bed, took the bottle of baby milk, slammed it on my table and said, “That’s calf milk for cows!”

That was the first time this angry, upset, protective feeling came over me and was when I realized being a mom was a massive job. I was ready to ninja her! These offspring and their well-being become your entire universe.

Nothing, though, prepared me for baby number two. She was at a different level of ill and emotion. Each time my daughter Molly was ill, from that first week when she was a tiny baby, I suffered the worry, like any parent would. I’d have a stomachache, I’d feel sick and anxious, only she was really poorly and for most of the time.

No one would notice from the outside that I’ve spent most part of the last two decades in pain on the inside. I have this weird survival mechanism. I always bounce back. I put my everything in to making Molly better again and never give up until she is.

Yes I’m tired, I’m worn out, the bags under my eyes are like suitcases, and I sometimes resemble scarecrows from “The Walking Dead.”

I’ll admit I’ve suffered my fair share of depression, anxiety, insomnia and isolation, too, mainly due to the constant effort in keeping my child well. And then the big frequent bursts of the effort bubble a few weeks later when she is poorly again and I’m back to the start.

So by now — after the rare diagnosis of a life-threatening illness, the heart problems, surgery (three times), pneumonia, scoliosis of the spine, deafness, eye problems, appendicitis, constant chest infections, chronic asthma, seeing her near death’s door, myalgic encephalomyelitis, seeing her lose her childhood and school years to illness, not to mention the years of trauma from hideous tests, medical treatment and hospital visits — by now you would think a human being would become hardened to this kind of thing. Maybe people think I am? I don’t really know. Well, the truth is I will never be used to this.

I’ll never be able to just toughen up and not let it affect me as it does.

I remember when I started learning guitar age about 10. The tips of my fingers were sore for months because of the steel strings, and then eventually they hardened up because I kept on playing, they became tough.

It was the same thing with gymnastics. The more I trained, the more my body my muscles stopped hurting. I stopped crashing in to things. Eventually I could fly through the air, somersaulting over a high bar in to three back flips without thinking about it! I wasn’t afraid, it didn’t hurt anymore and my body was tough. I was used to that thing!

This does not happen with your heart. Although your body is used to the stress and upset, your heart never will be.

Every time I see my child in pain, it cuts like a knife. I realized this today as my 4-year-old was undergoing a tonsil operation. I felt the exact same feelings as when Molly had her first operation age 4 months old, 17 years ago. I couldn’t breathe, talk, I felt sick and was an emotional wreck.

If your child has chronic illness, it’s hard. You will need support.

Talk to friends and family so they understand — just because it’s a constant part of your life, that doesn’t mean you are fine with it and can deal with it alone.

Remember to do nice things! Treat yourself! You deserve it because you are a warrior of life. Take breaks, go out for dinner, laugh a lot every day and just remember that you are an amazing human being.

mom looking at and smiling at young daughter she's holding
Rachel and her youngest daughter.

Follow this journey on Saving Lives for Steroid Dependents.

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Originally published: April 25, 2016
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