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Loving Someone With Sickle Cell Disease
I remember the first time we went to the hospital.
It was a Sunday, relaxing at home on a cold February with friends and relatives. One of my relatives stated that the baby felt a little warm. My heart dropped. The baby was not even six months old yet. Even though I was anxious, I felt prepared to handle the situation.
First get the thermometer, I remember telling myself. The baby was not crying. He seemed okay.
Next, Charles, Sr. and I wrapped the baby up in blankets and called the hospital to inform them we were bringing him in. We didn't have to wait. He was brought right up to the floor. All his vital signs were checked, and basic questions were asked of Charles, Sr. and myself.
The shock came when the baby had to be admitted to the hospital for observation. The tears started to flow. I thought he was going to be treated and released. However, the nurses explained that it is routine for an infant with sickle cell disease to be admitted for fevers.
All kinds of blood tests were taken, and they all came back normal. Charles, Jr. was hooked up to an iv to receive fluids and antibiotics.
The baby was fine! Nothing showed up in the tests. The fever broke and we were sent home in what seemed like forever, (two days). After this experience, Mom and Dad needed to recover in the hospital themselves. We all survived.
By Darlene Hoffman
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Loving Someone With Sickle Cell Disease
I'm just like anyone else in love... I have dreams and desires for us - now and in the future... I plug him into all of my fantasies, and hope that we will be able to do everything we want to within the space of our lives together. The reality is, I may face many years without him, that is if he follows the statistics. How do I live with the prospect of losing the one who I have grown to think of as my other half?
I try to not to dwell on the things that we can't do, and the events we have missed, the dates we have had to cancel, or the times that I have had to go on without him when he has been in the hospital. There have been many sacrifices, many times when I have wept with disappointment or frustration. Worst of all, I have wept out of helplessness at having to watch my beloved suffer at the hands of a merciless disease, particularly during those situations when the people taking care of him haven't done right by him. The medication didn't arrive on time, or it wasn't strong enough, or some complication took over, befuddling the doctors and nurses as they tested and poked and prodded away at his body in an effort to get to the bottom of some mysterious symptoms. I have witnessed countless opportunistic infections, pneumonias, bouts of acute chest syndrome that almost took him out for good, emergency surgery, unexplained symptoms (that mystery vertigo that lasted for almost a year), and more mundane episodes of carelessness, ignorance or downright incompetence on the part of medical professionals that resulted in even more pain and suffering for my husband.
And yet, given all of these terrible things I have witnessed him endure and endured right alongside him, I have also shared countless hours of joy and happiness with the man I call my life partner. For somehow, out of all of this pain, he has taught me to treasure the beautiful things in life - those precious moments we share together laughing, or being with friends or family, or working on some project we really care about, watching a play or a movie, listening to a moving piece of music, playing a game, telling stories, or just holding each other closely... I'm not sitting around waiting for him to die. I am celebrating life with him, every day.
They say you can view the glass as being half empty or half full. I choose to see it as half full. Not that I ignore the things that frighten or anger me. On the contrary, that's one of the reasons that I'm involved with building the organization we call S.C.A.R.E. I figure, this is the place I find myself in. I'm part of the sickle cell community - I married into it! So, I have a responsibility to contribute the things I can towards the effort at making things better for all of us. I suppose everyone in the sickle cell community has this choice.
We all experience pain in our lives. Even if sickle cell wasn't a factor, we would all have to deal with suffering of some kind - it's a part of life, just as death awaits all of us, someday. I guess I can say that I have a little more experience than some people do in dealing with this kind of adversity on a daily basis. If that has made my life more difficult than some other's, then I hope it has made me stronger and more resilient, and more able to face other challenges in my life.
By choosing to believe that Ivor and I are together for a reason, and that we have a responsibility to share our knowledge with others, I have been able to maintain an optimistic view of life. I truly believe that we can make a difference in the quality of our lives, and maybe even the lives of others. We have been able to find better medical care for Ivor, and by educating ourselves, we have learned what to expect of ourselves and the others who are involved in his well being. I have a good relationship with his doctor and his pharmacist, and we all communicate on a regular basis. We are all part of a team dedicated to helping Ivor as he takes care of himself. He and I have our good days and our bad days, but I can honestly say that life is pretty good. Sickle cell is a giant part of our lives - no longer a feared and hated enemy, but something to respect and negotiate with on a daily basis.
-Deborah G. Oster Pannell