Gloria reflects on the experience of a mother with a child with Sickle Cell, a genetic blood disorder. Perhaps, you have experienced something similar. Let me know about your experience and we can talk about how coaching can help manage distressing feelings, such as, guilt.
I don’t know how you cope, I don’t think I could do it .I just wouldn’t survive it. I have heard these sentiments in various compositions and every time I hear it, I feel angrier than the last time. I am sure most of those who have said it to me mean well and sometimes it comes from their own fear and secret joy that they do not have this particular challenge in their lives; I get that, because I have also had similar feelings about other situations. However what infuriates me is the lack of sensitivity that accompanies those sentiments, it suggests you have a choice in the matter. I usually retort with righteous indignation saying,’ so if I couldn’t or didn’t cope, what exactly would that look like? Would I give up my child, run away, pull the covers over my head, what exactly do you think I would do?
My too cute for words first born child was born in Atlanta GA USA and I could hardly contain my joy when she arrived. She had eyes the size of saucepans and her cheeks, well they were the biggest, roundest, juiciest things you had ever seen. I spent half the time in hospital with her fending off the nurses who kept trying to kiss her cheeks! Then we got the news that she had Sickle Cell. She still looked as angelic and as beautiful as ever, so I didn’t know what this illness meant. My only understanding of the condition was that it was something to be feared and not talked about. I had a cousin in Nigeria who was a lawyer, who had lived with the condition but lost her battle some years earlier. As close as I was to her and as much as I adored her, we never discussed her illness. I come from a community and society that has deep rooted cultural and societal fears around disability and most serious ailments. If you talk about it you might somehow be inflicted by it or it might have been a curse or punishment and the usual pulp and dribble that accompany ignorance and fear.
My daughter turns over 30 this year (unbelievable!) She’s smart, funny, creative, a kind, generous soul. From the day she was born I was told she was my spitting image. Thirty three years later people still call her my mini me…totally freaks us both out! She has struggled and continues to, sometimes barely having much left in her due to her determination and choice to live. It was hard going through her education. She went to take her A levels just a few hours after being discharged from a hospital stay, and did quite well.
We have a particularly symbiotic connection, where if she itches I scratch! I will get an inkling something isn’t right and send a message to her and she will call me a ‘witch’, asking how I knew! Or she will seek me out because she senses I may be going through something. We have been doing this for forever.
I will never, ever get used to seeing her in pain! I will always want to find a way to make it go away. She usually smiles and looks at me with equal measure of kindness and pain when she sees me running helter skelter, trying to find a solution to a particularly severe crisis(painful sickle cell episode). However, what she has brought to my life, her younger sisters’ life, to our family as a whole has been beyond description. The only words that come to mind are exquisite joy! Her ability and capacity to draw from the depth of her soul while faced with tremendous challenges at times; to offer empathy, love and attention to her family when required, confound me. She once described me as her ‘lucky charm, her protector’. In my mind I felt if I were any of those things she would be without sickle cell. But that’s not how it works is it?
Yes, there are very dark moments for her and our family from time to time, but she thrives in much deeper ways in spite of and because of her challenges. She is a singer, song writer, has been a member of rock bands, has a wicked dry sense of humour, the sound of her laughter is so rich and melodic and joyful, it moves me every time. She is living her life on her own terms. As much as she feels despairing at times, she’s the definition of an optimist. I don’t know what’s ahead for her, but we all have that in common. My mantras, affirmations, even clichés have always included the following: Tomorrow is another day, no condition is permanent no matter how dire, everything must change in some manner, nothing stays the same. The future is a mystery to all of us; we are all in the dark about that (2020-2021??), it’s an unknown quantity. We only have the gift of today which is why it’s called the present!
