You are my whole life.

Sometimes I wonder how I manage to make it through these days. You see, yes I have my problems, but the most important person in my life also has her own problems. Life is so unfair sometimes. I’m not a religious person at all, far from it. If there was a God, I find it hard to believe that he would inflict pain and suffering on children.

My daughter is sick. Not as sick as some poor children in this world, but I’m not here to talk about them. I’m here to talk about my girl. My only girl. The only reason my heart still beats.

When I met my daughters father, I was well aware that he had a rare blood disorder. Hereditary Spherocytosis. I didn’t know much about the illness and when I was pregnant, his family told me that this disorder was genetic but didn’t affect the women in the family. She was however tested as soon as she came out of the womb, and within hours I was told that she too had this blood disorder. She was monitored closely as a baby. Regular blood tests every three months to keep track of her blood levels and haemoglobin. I also had to give her folic acid daily. As she grew we had various problems but nothing as serious as some children and adults that have this illness. Her paediatrician was always on hand to give me advice should I ever have needed it. The only time we really had problems was when she caught a cold or virus. She would get even more tired than usual, and even more anaemic. It would also take her longer to recover than the average healthy child because of the amount of red blood cells that would be breaking up inside her needed to fight infections. But she was never ill enough to the point where she would require a blood transfusion, which obviously I was thankful for. And to this day she still hasn’t required one. Touch wood, she never will. Some children her age have been so poorly with this disorder that they have required blood transfusions and splenectomies. I can’t even begin to imagine how hard that would be for the parents to see their children so sick.

Fast forward to a year and a half ago, she was eight years old. She was getting poorly a lot. A lot more than usual. She loved/loves school and was phoning home regularly. She would come home from school and get straight into bed and be unable to move. Crying in pain because her tummy hurt and having upset stomach constantly. She would sleep, a lot more than usual and be continuously lethargic. No interest in anything and would just be watching TV or movies and napping. Each time I took her to the doctors, they would fob me off with “Its just a viral infection and she’ll recover in a few days.” She would recover in a few days but the next week she’d be exactly the same. Finally after about six months of “viral infections” they referred me to her paediatrician at the hospital. Because she had been doing so well, they had closed down her open pass to the Childrens Ward. Her appointment was sent to us fairly quickly and we went to her appointment on the last day of January. With her being eight at the time, I didn’t want to be putting words into her mouth, so she told her specialist exactly how she was feeling and what pains she had etc. They ran some blood tests and within two days I had a phonecall from her specialist. My daughter didnt have a viral infection and it was nothing to do with her HS, she had Coeliac disease.

One year later and she has been on a gluten free diet since her diagnosis. She is doing well but still gets poorly often. We are doing everything right and are super careful with cross contamination and checking foods. We have to go back to a separate specialist now as well as her HS specialist but she has lots of support from family and friends and doctors. I’m so proud of how resilient she has been. She’s taken it all in her stride and been so good with trying new foods and if anything, is so much more healthier food wise than she has ever been. When we go back to her specialist and dietician, we will be able to sit down and work out why she is still getting sick often. That appointment can’t come quick enough.

We both have our problems but hers are far more important than mine. I live for this girl and she is the soul reason why I was put on this earth. If I could take her pain away, then I would in a heartbeat. Like any Mother, we hate to see our babies hurting and in pain. Anytime I hurt or struggle, there is a reason to carry on. Anytime I cry because I don’t think I can take anymore, or I’m tired and only managing to get two to three hours of sleep a night, there is a reason to carry on. That reason is her. She is my whole life. You are my whole life!

Kimmi’s Qualms X

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