“Will the Cycle End?”
Trenton, Taylor, and Tyrie Booker
2006 Children’s Miracle Network
“Champion Ambassadors-Alabama”
Children with the Sickle Cell Disease
Written by Mother: Stacy Clark Booker
Life is so easily planned when you’re in your younger years. It would seem that you have everything mapped out completely. Maybe you planned to graduate college, find a job in your field, then get married and have kids. It all sounds so perfect. How would that view of life change if the announcement of your new son or daughter also brought news that your child was born with a chronic illness. You may have one child with a chronic illness or maybe two, but all three! This wasn’t in my plans.
I am the proud mother of three children ages 11, 12, and 14, who have a chronic illness called the Sickle Cell Disease. Sickle Cell is a hereditary blood disorder that causes severe physical pain resulting from the clogging of blood vessels by sickled shape cells. All illnesses come with their own struggles and obstacles. I’ll share with you some of ours.
In dealing with this illness, I find that we are locked into a cycle. Some refer to it as the “sickle cycle.” This pattern keeps repeating itself and always starts with the onset of pain in some way. Life is as normal as we allow it to be before the pain episode begins. The kids may be outside running and playing, or we may be sitting down for dinner when I notice that one of them may be fatigued. The energy level is much lower than before. Then I hear, “My arm hurts,” or “My leg hurts.” The pain normally starts as a slow throbbing action and gets worse over the course of a few hours. Other times, the pain becomes severe over only a few minutes, and there’s no time for at-home care. We go straight to the hospital. If there is time for at-home care, the first questions I ask myself are, “Did I let them play too long or too hard?” “Did I make them take enough breaks?” “Did I make them drink enough liquids?” “What did I do wrong this time?”
After I clear my mind, it’s time to start administering pain medicines in hopes that we won’t need to have a hospital stay. Now is the time to add a higher liquid intake and more rest, if possible, and to increase the intake of green vegetables. Ibuprofen is given to help ease the pain at this point. Usually, I give the doctor a call to give the medical team a report on the child’s health. At times, the pain can’t be eased by Ibuprofen alone, and the doctor will prescribe a stronger pain medicine to be used along with the Ibuprofen. This is done around the clock, along with yet more liquids to try and control the pain. There are times when the crisis ends here, and my child has only missed one or two days of school. Other times, the pain gets worse and the doctor is called again. These times require a visit to the hospital for a few days. My child then receives fluids for hydration and narcotic pain medicine through IVs.
A week or more of school is missed as well as a few days of work for me. It’s not easy dealing with this process while trying to maintain financial stability. This cycle repeats itself for each of three of my children. Sometimes I’m blessed enough to have a family member stay at the hospital while I work. Leaving my children with someone else while I work causes me to have feelings of guilt. I feel like I’m a bad mother. My head has to out rule my heart during these times.
After my child is out of the hospital and has returned home, it doesn’t mean that the stress is over. We now have to deal with the stress of a different kind. Returning to school after a hospital stay is not an easy task for my kids. The social aspect of this situation is very important to them. What will their friends say? How will they react to them now? Will they still be accepted by their peers? They’ve also missed a week or more of in-class instruction as well as homework and class work. These assignments have to be made up along with the present assignments that are due. Multiply this process by three, also. If I don’t help my children find a balance, the homework can become overwhelming, and they may shut down or become so stressed that they may go into another pain episode and start the cycle all over again.
The academic team does a great job accommodating my children’s needs, especially in the area of make-up work. If there is ever a problem with this issue, it’s usually because the nature of this illness is not understood. At the beginning of the school year, I will send booklets of information on my children’s medical condition to teachers who may not understand the disease. If necessary or if requested, I will schedule a conference with the teachers and explain this condition and how it affects my children in the school setting. Awareness is the key. It is vital to have effect parent and teacher communication in hopes that the children will have the best academic and social school year possible.
Our family does experience a great amount of pain at times -- both physically and emotionally. However, this has only strengthened the bond of love we have for each other. It is that bond, along with a strong belief and encouragement from family, church family, and friends, that enables us to overcome the challenging times.
Our family’s attitudes in the face of adversity earned my children the honor of being the University of Alabama-Birmingham (UAB) Children’s Hospital “Champion Kids” for the year 2005.” Because of this honor, the children were chosen to be the Children’s Miracle Network “Champion Ambassadors” for the state of Alabama in March 2006. During the Champions across America tour, the children traveled to Disney World and participated in the Children’s Miracle Network’s celebration and radio-thon. The children also traveled to Washington, D. C., where they met President George W. Bush.
It seems that God had a greater plan for me. He gave me three champions. Everyday, I am reminded of their courage to face their challenges with Sickle Cell. I pray that the world will one day embrace the challenges that families with Sickle Cell Disease must endure, and we will no longer need to honor our children for the pain they face daily.