To the parent with a chronically ill child Why you will never be used to this.
For 17 years I've cared for my child with chronic illness.
Although I've been a mum for a bit longer 21 years and 7 months to be exact.
I was a newby to this mother thing then and he was healthy. My first experience of the overwhelming emotions one feels for their child came to me when he was only 2 days old.
My baby boy had brick dust urine, His nappy was red. I knew this was because he had not been fed (I had read every book in the world on baby's and pregnancy by this point!
Managing a busy photo lab i had a good job then and was given so much time off with my pregnancy ailments. I learnt the lot!!)
He had red wee 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 damming 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'S MILK FOR COWS!!!!! '
That was the first time this angry, upset, protective (that's my child YOU COW!) feeling came over me and was when i realised being a mum was a massive job, i was ready to ninja her! These offspring and their well being become your entire universe and you become their He-Man.
Nothing though prepared me for number 2, she was at a different level of ill and emotion. Each time Molly is ill from that first week when she was a tiny baby, I suffered the worry, like any parent would. I'd have stomach ache, Id feel sick and anxious,
only she was really poorly and for most of the time. I do wonder to be fair how I still look like a normal human being after 17 years. No one would notice from the outside that I've spent most part of the last two decades dying 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, i sometimes resemble scarecrow from the walking dead.
I'll admit I've suffered my fair share of depression, anxiety, insomnia and isolation too. This 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. May be i'm too much of an optimist who knows
So by now,
After the rare diagnosis of a life-threatening illness, The heart problems, The surgery (3 times) The pneumonia, The scoliosis of the spine, The deafness, The eye problems, The appendicitis, The constant chest infections, The chronic asthma, Seeing her near deaths door, The M.E. The ability to walk, read, write and function the way she used to, 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.
S0 by now you would think a human being would become hardened to this kind of thing!? May be 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 3 back flips without thinking about it! I wasn’t afraid, it didn’t hurt any more 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 you see your child in pain or poorly it cuts like a knife. I realised this today as my 4 year old was undergoing a tonsil operation. While she was in theater 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.
So I'm sorry guys I don't want to be negative or depress anyone.
If your child has chronic illness, it’s hard. You will need support. Talk to friends and family so that they understand, just because it's a constant part of your life that doesn't mean you are fine with it that you can deal with it. Remember to do nice things! Treat yourself! You deserve it you are a warrior of life!. Take breaks, go out for dinner, laugh a lot every day and just remember, more importantly that you are an amazing human being!
Follow my scary journey with number 2 if you wish the more people to help me out with these nerves the better R x