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The miracles of Brea.

A mother explains the many difficulties and hidden rewards of having a child with multiple disabilities.

Our second child, Brea, was born three years ago with a muscle weakness. She had a club foot, a dislocated hip and some joint stiffness. She has a tracheostomy due to chronic respiratory problems and is fed via G-button because of swallowing difficulties. At night while Brea sleeps, we put her on a CPAP (continuous positive airway pressure) machine to put positive pressure into her lungs.

Brea says a few words and seems to understand almost everything. She can sit up when put in a sitting position, plays with her toys and loves books. She can scoot backwards on her bottom a little bit, but tires easily. That is the extent of her mobility. We are waiting for the insurance company to approve a wheelchair but for now we carry her everywhere. Brea is absolutely beautiful. She is happy and cheerful when healthy and entertained. She tends to get bored and irritable in the evening and it can be frustrating finally getting her to sleep. (She is very normal that way!)

Busy Days

My husband, Gil, and I work full time -- he is in land surveying and I am a first-grade teacher. For the last three years, Brea has had a nurse who arrives when I go to work and leaves when I get home. In addition to the normal household and family chores waiting for me when I get home, there are breathing treatments, lung suctioning, chest therapy and blended food therapy. There is always physical therapy to be done, not to mention cuddling and playing with Brea as well as our five-year-old, Ross, and our dog, Willie. Then, of course, there is bath time, dinner time and book time before bed. Often during the winter months, Brea has pneumonia and has to be rushed to the hospital or is at home connected to oxygen tanks with an IV in her arm. Needless to say, our stress level is high!

Making Changes & Coping

Gil and I have always been outdoors people--on the go, travelling a lot. It has been hard to lose that freedom. We like to do things as a family but sometimes Brea is just not well enough to participate. When she is well enough to join us, we choose our activities carefully because she cannot stay in one position for too long and she needs breathing treatments every four to six hours.

We try to choose things to do together that will not add to our stress. We avoid large, quiet groups and indoor restaurants. We boat, bicycle and go to the beach, zoo or the homes of close friends. We have taken vacations with Brea and all of her medical equipment. It is tiring but worth it just to have a change of scenery. Sometimes we leave Brea with her grandmother and go on day trips with Ross. We are very fortunate to have my mom so close.

It is very hard to successfully deal with the stress and heartbreak of having a child like Brea. You have to be "thick-skinned" (not my strong point) and you have to be able to "transcend" the pain (I tend to be earthbound!). Taking Brea anywhere can be very painful for me, especially when I notice people's reactions to her or watch other little girls. But, not taking her places is equally painful because she is my child and she should be there with me. I am constantly having to push aside negative and painful feelings, focusing instead on the sweetness of Brea, who she is and all the love we share. I am not denying my feelings or pain, but I do not waste too much energy on them.

Gil and I used to say maybe things will get easier. We finally realized that they probably won't. We just have to be happy with our lives now. I want to be happy and I want my family to be happy. This is a terrible blow but our lives will go on and I want them to go on happily.

Some days I have a bad attitude. I am embarrassed by my inability to handle things gracefully. On some of those days, I just go ahead and be a grump or feel sorry for myself and Brea all day. (I apologize to people later if necessary!) I cry, rant and rave--whatever I need to do. And then I feel better.

I take long runs four or five times a week. I go to church and have met a lot of supportive and inspiring people there. I read whenever I have time. I eat well, take vitamins and buy myself something nice whenever I can afford it! None of this takes away the pain but it helps me to deal with it.

Brea will have hip surgery this summer and will be in a body cast for eight weeks. In the fall she will be attending a preschool program for children with disabilities, which will be at my school for the first time ever. We are hoping that she will be healthy enough to attend on a regular basis.

Different Kinds of Miracles

Ever since Brea was born, I have been hoping to write a miracle story -- the kind where the child beats all the odds, surprises all the doctors and lives a normal life. Although that miracle has not taken place, I can see other miracles at work here -- the miracle of Brea who is happy and loving in spite of all her hardships. The miracle of my husband and I -- basically immature and unprepared for this crisis -- handling it (sometimes ineptly and other times well). And the miracle of my little boy, Ross -- happy, healthy and telling his playmate on the way home from school, "Wait till you see my sister!"
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Author:Howatt, Chelle
Publication:The Exceptional Parent
Date:Apr 1, 1993
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