Living with the fear

I never truly understood what living in fear was until Sophie was born. I’m pretty sure it’s new territory when any special child is born but how do you learn to live with the fear when it becomes a permanent fixture in a parents life. The fear that my child could stop breathing, choke or suffocate from the moment of birth was a harsh reality that brought this fear into my life. I try to be positive and only focus on the good but the fear lurks waiting for the right moment to surface and drag me to a deep dark place if I allow it too.

After three days of coughing, snotty nose, mild fever and the newest symptom, mouth sores I decided it was time to make an appearance at the hospital once again. I dropped Emily off at Saturday school went home nursed and changed Tristan. I packed a bag with extra clothes, Pediasure, cloth straps Sophie uses for mouthing, lotion because she loves massages and her Ipad. I never know what to expect so I like to be prepared. I made a stop for an iced coffee and headed for the hospital.

That’s when the fear surfaced yet once again. As I drove tears started to flow down my cheeks like a waterfall making it’s way down while the thought’s of what could be wrong with her this time flooded my mind. Could it be another bacterial infection, pneumonia, RSV or another sinus infection. Will they be able to use medication, will the medication work, what if she doesn’t respond again; then what will we do? I felt an empty dark feeling in the pit of my stomach. I’m afraid of every fever, every cough and each new symptom that makes its presence. I fear the failed responses her body has to medications or the effects they will have on her liver yet once again.

This months visit to the hospital…Mother walks into the Hospital like it’s second nature knowing what will take place step by step. She hears herself  like a recording as she goes over the child’s medical history and each time the nurse says “oh, poor baby”  and mother can only agree. Then they are taken  back to a room where another nurse comes in with a doctor and they do it all over again.

Greeted by a doctor who put’s on gloves and a mask before touching the child.  Doctor immediately states its a virus after a brief evaluation. No blood work because it’s a virus, no x-rays because her lungs sound clear even through all the junky congestion and cough. Just a quick evaluation followed by a few exchange of words between mother and doctor and the plan of care was quickly agreed upon. Mother suggests a shot of rocephin the only antibiotic she responds too. Although a virus is not typically treated with antibiotics doctor decides some oral antibiotics should be given because of her medical history. Mother agrees after discussing all the medications she is immune to. The chances of the child catching a dangerous bacteria are very high so it’s better to be safe. Doctor suggests benedryl mixed with maalox for pain on the tongue sores plus motrin for fever. A few minutes later the nurse comes in to administer the shot. Rocephin burns upon entering the skin so mom knows the child will be upset. The child screams in pain holding her breath in the process turning blue and a pale shade of grey before she releases and inhales some oxygen. Causing her mother’s heart to beat so fast it makes her dizzy, causing the nurses to alarm and want to bag her while mother  assures them that this “is normal for us”.

And were back to reality with a deep breath of relief that this time my fears were not validated. But the fear remains. The fear of bacteria and microscopic takers of life that make their appearance when you least expect them. The fear of those things you always though that could never happen to you the realization that they can happen to anyone.

Fear, it’s powerful and can leave you feeling powerless. I have tried but have found it impossible to overcome my fear so I must learn to live with it. I let it surface once in a while and cry through it with my husband because I need him to understand my pain. When I allow myself to feel the pain I allow myself the opportunity to regain my strength and in this process I can be stronger for my child.

This fear is now part of my life and will remain so. Instead of allowing it to destroy my life I decided to learn to live through it.


2 thoughts on “Living with the fear

  1. Jeanne Chavez

    Oh how I know your fears. I’m only the grandmother of our CDC child, Jayci, but I have been with my daughter every step of the way. The breath holding…and viruses are scarry. Jayci just got over another cold and now I have it! Small price to pay for making sure she is comfortable and does not get anything worse than that cold. This time she fought it off and managed to not get an ear infection or worse.
    Your blogs are such a wonderful insight in the life of a CDC child. I feel that my daughter’s life and yours are so simular.
    Jayci will be 5 in June. Still not walking although she will eventually. No speech or even a glimmer that she understands what we say to her. She is nearly blind, has heart artery mal formations, kidney malformations, one leg is slightly shorter and club thumbs but this little gal has heart and has bloomed. Jayci is mostly a happy and loving little girl.
    My daughter also has to other sons. One older and another younger. She also is pregant with her 4th baby. So you and my daughter are very alike in your family life. Take care and send out more blogs when you get a minute of peace and quiet.

  2. Life's Unexpected Blessings Post author

    I am very happy you enjoy my blog. It’s important we know we are not alone and there are others that understand what we go through! This is why I decided to document my journey into this new world which is starting to feel not so new anymore.


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