When Your Children Are Ill

Although I do have an invisible illness, hypothyroidism, my story is about being a mom to kids with chronic illness. I have three children and all of them struggle daily to function in a world that judges by appearance.

My older daughter and my son both have postural orthostatic tachycardia syndrome, a form of dystautonomia. My younger daughter has not yet been diagnosed but has suffered from painful joints and low blood platelet counts for over four years. Could be lupus, could be arthritis but we don’t know yet.

All three are bright, articulate, nice looking teens or young adults. All have faced isolation and misconceptions from peers and adults.

When we choose to have children, we know that it is our job to care for those children, to make their environment safe, to kiss the boo-boos and make things right.

When those same children begin to have unexplained health issues it is a huge burden on a mother. She’s used to fixing it and this is something that she has no power to fix. The only thing she can do is become her children’s health advocate.

When doctor after doctor diagnoses a somatic condition because it doesn’t fit into his or her little box of symptoms, mom continues to research and make phone calls in search of that one doctor who can help her children. I was blessed to be able to find the right doctor for my kids with POTS. I’m hoping we’ve found the right doctor for my other daughter.

Family and friends don’t understand illness that doesn’t fit the norm. What they don’t understand, they question. After enough questions, you begin to doubt yourself. This is true of both the child with the invisible illness and the caregiver.

I want people to know that the best thing they can do for those with chronic illness and the family members who care for them is to pray and to offer encouragement without offering advice or judgment. I also want to say that I am so proud of my children.

They are strong and they will overcome the obstacles they face. I thank God for each one of them and I pray that he will continue to guide and direct them.

National Invisible Chronic Illness Awareness Week is important because it helps people to remember to not judge based on outward appearance.

Deana Tritch is a wife, mother and homemaker. She is also a miniaturist and you can see her work on her blog, www.delightfulminis.blogspot.com. She is currently trying to single handedly educate her community about dystautonomia, the condition that two of her children have. She lives in rural Indiana with her husband, son and a few furry family members. Her daughters are currently in college and the oldest one is planning her wedding.

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