When My Daughter With a Rare Disease Sees This Painting, I Want Her to Remember This

I have just produced a portrait for a global rare disease art exhibition. My idea was to incorporate the angel wings / boxing glove torso I designed into it. It represents the fight for flight stress response Molly never had. Molly has had the rare life-threatening condition hypopituitarism with adrenal insufficiency since she was born. The simple fact was we could have lost her to it at any time. No one would have known a simple cortisol injection would have saved her.

I began by painting Molly’s face, remembering all of her little features and beautiful baby cheeks made all sorts of emotions start flying back. I felt regret, sadness and shock at the fact my baby girl could have died at any point in her first 14 years. I remembered the little dress she was wearing and the curls in her hair, which took me ages to detangle because Moll felt pain or discomfort much more than anyone.

What hit me the hardest was painting the actual tears in her eyes. For every tear she has ever cried, I feel I as though I am responsible. I had looked at this photo on the wall a million times. I’d never seen the tears before. Now I was actually painting them and I felt so so sad. My poor little girl, she had a growth hormone deficiency, poor thyroid function and very low cortisol. Had all of these things been discovered. Had she been medicated, those tears from feeling unwell so often would have been much much less.

Molly thinks she is weak. She’s 17 now and gets so frustrated when she is in pain and feels so poorly. She has battled through all of primary school, never once giving up and losing the will to want to be at school. She  tried ballet with chronic asthma and joined the Brownie, always wanting to attend every gathering. She unicycled. And when she was well, she didn’t stop trying to do all of the things she wanted. Molly battled her way through feeling poorly, to the point when she would just collapse in a heap on her desk at school and go in to a deep sleep. This happened a lot. We never knew how ill molly was. She could be running about and suddenly she would stop. The teacher would phone, I’d take her to hospital and discover she had pneumonia.

I have lost count of the tests she’s been through. I used to say to people when the nurses were putting needles in her hands, “How does this make a small child feel? They don’t know or understand it is for their own good.” And there I was, appearing to my baby that I was letting them do this.

Molly fought against all the odds, she had no natural mechanisms inside her to make herself better. She just scrabbled through each time, nearly always ending up in hospital on iv antibiotics. The closest call was when she was 9 years old and had appendicitis. She had previously that month been tested for Addison’s disease. Although it was negative, she effectively did have Addison’s, just a different form. Her adrenal glands work, but her brain doesn’t send the signal for them to do so. During the assessment, the surgeon told Molly to jump up and down. Although the pain was immense, Molly did jump up and down because she is a fighter and will never be defeated. Then, the surgeon made a huge mistake. Because Molly jumped up and down she said, “Oh well, no one with an appendicitis can jump up and down — the pain would not let them.”

Molly was left on the ward, with no consideration for the potential deathly Addison’s complication and with the surgeon’s opinion that she was OK. Her appendix erupted in the early hours of the morning. I can only thank again her own body for cocooning her appendix in a massive wall of fat cells. This prevented the poisoning of all of her organs.

Molly was rushed to surgery. She was saved, I believe, because of the massive dose of steroids (cortisol) she was given because of her chronic asthma. (The protocol for anyone with adrenal insufficiency/Addison’s is to give cortisol cover in any operation. This prevents the body going into adrenal crises and death.)

Molly was ill for weeks after this. The surgeon said in his career he had never come across the body cocooning the burst organ in this way. protecting itself from serious peritonitis. She did have pockets of poison all over her body from the eruption but mainly it was contained in the cocoon. Molly was very poorly following the operation no one could make out why she was so ill. She even asked me why the doctors didn’t know what was wrong with her. She had adrenal insufficiency. She needed cortisol.

Finally, after loads of antibiotics she was discharged from hospital. Moll slept in a toddler bed with us in our room for the next four weeks. (She was tiny). She would hallucinate and be terrified of big spiders on the walls. They were not there. One night, she thought her hands were big, floppy, rubber hands. She was screaming at them and waving them about. It was terrifying for her. The doctors put it down to effects from the drugs and anesthetic, but we now know it was due to low cortisol. She was in grave danger, but again, we did not know.

Now, the angel wings in my painting take on a different meaning to me. I truly believe for 14 years, Molly was protected by something much bigger than we know. Although her angel is still there (I believe he is my brother), I feel like I’m taking over the protection in a real world sense. That must have been hard work for 14 years. I know it was this end.

So now when Moll looks at herself as being chronically ill, tired, weak and “no good,” I can show her this and say, “No, you are the strongest person I know. Your battle to live, to run, to jump, to eagerly learn everything you have has been 1,000 times harder than your average peer could ever imagine. You have defied all odds to be here. You are not weak, you are strong. You will always fight for your flight. And now we know everything we can help you do it.”

 

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