FINDING THAT HAPPY MEDIUM

In my blog, I often write about finding that “Happy Medium” with Chloe. At times it’s hard to know when not to let your anxiety take over. I worry about Chloe getting sick. It is one of my fears that I hold inside trying to not let it get a hold of me. I want Chloe to have a happy normal childhood and that is what my husband and I strive for. But, at the same times, I want to protect her and keep her in a protective bubble.

Lately, Chloe has been showing a lot of anxiety at her doctor’s visits. Chloe also exhibits fears about getting sick. This past year, she has been making comments stating that children at school were sick, and she is concerned that she will get sick. Why has this happen? I believe it’s because of her medical history of frequent infections. I believe that the study that Chloe participated at the NIH and 5 days she spent at Childrens because of illness may have caused her nervousness of becoming ill.

So how do I go about finding that “Happy Medium” when it comes to Chloe’s fear of getting sick? Well, it starts with me. I have to overcome the fear. I know that there are certain things in life that we do not have control over. I know that what ever cards in life you are handed you have to deal with it the best you can. But, I also know that I have to instill certain precautions to help prevent infections that may cause pneumonia, sinus, ear or bronchitis. I also know that I have to be careful with certain things that may cause a bacterial infection that may lead to sepsis. Parents of children who have Asplenia, Functional Asplenia or Polysplenia understand this.

First, I need to let Chloe know that she needs to wash her hands before eating, before and after she uses the bathroom, and so on. Chloe needs to understand that everyone should do this to help prevent germs from spreading. Chloe understands that she takes certain medicine to help her stay healthy because this will help limit her infections.

Second, when it comes to her doctors appointments; I will try to converse away from Chloe. Chloe doesn’t need to hear everything but only the things her doctor and I feel that she needs to know. However, I will continue to tell her the truth and prepare for doctors visits. I feel that lying to Chloe is not good and creates more anxiety that she does not need.

Third, I will no longer speak about Chloe’s medical condition in front of her to family and friends. Children do not like to be talked about.

Forth, I will continue to listen to Chloe’s concerns and never degrade my daughter. I will continue to complement her on the smallest things she does.

Fifth, if I feel that her fears and anxiety are increasing; I will make sure that she sees a professional so she can talk about it. Sometimes, it may be easier for a child to talk about their feelings to a stranger than one’s parents.

Finally, I will continue to bring out Chloe’s strengths and emphasize on them. Chloe is a remarkable little girl who is loved by her family and friends. My husband and I are lucky to have family and friends who support our daughter. Most important, we never let a day go by without telling both my kids how much they are loved.

To be a parent is a gift in its own but, to be a parent of a child with a syndrome, disease or disability is an extraordinary challenge that God entrusted to us to take care of. People often say that Chloe is lucky to have parents like us. But, in truth we are the lucky ones to have Chloe. A friend once told me that God only gives us what we can handle…or from what we can grow and learn….perhaps you will help one other person and that is you’re calling as a mother of a very special and unique girl. Who knows? But I believe God only gives us special little ones when we are special too.

At the end, a “Happy Medium” is a work in progress that we have to work at everyday. It’s about finding the right balance and harmonizing our fears.