My Daughter’s Fight with a rare autoimmune disease.

My daughter is allergic to and cannot absorb iron, hence her iron levels are constantly low and she is constantly fighting severe anaemia and all the resulting side effects. This is a condition that effects .02 percent of people and very little is known about it. The immunologic basis of allergic hypersensitivity to iron agents is not known. Last year she was given an iron infusion, which sent her onto anaphylaxis, even with the use of  large doses of antihistamines.

The doctors can’t get to the bottom of her health problems and have said she cannot have another iron infusion unless she is near death as the risks associated with infusion are too high, the anaphylaxis may cause her heart to stop. So, iron agents will only be used if the benefits are clearly judged to outweigh the potential risks.

If she were younger, I would know how to be. I would take charge. I would talk with everyone involved, set up her appointments, be there for every single appointment, question the doctors, advocate for her, advise her what to do. But she is an adult, so I can’t do these things. Nor should I; this is her disease, which she will be dealing with for the rest of her life. She will learn to manage her health and her health care by herself.

But she is my child, the mother of two of my granddaughters. She will always be my child. I will always be there for her, whenever  she wants me at appointments, I am there, whenever she wants me, I am there. She is very responsible, she is capable, but I cannot stop my eyes from randomly filling with water, nor allay my fears. I cannot stop myself from lying awake at night, nor from waking each morning at 4:00 am, unable to sleep. She is my child and I love her fiercely and I cannot help but wonder why should it be her, why can’t it be me?

Then I remember, yes she is strong and  believe  all will be fine. She is her own woman, and this I know; I  love her and she loves me. 🌹

Imagination, shapes and Airy Nothings