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Carolyn Martinez




‘Baby Nickalus’

Baby Nickalus

It had been a steaming hot day, as I watched out the window, a slight breeze began to stir. The days had been so unbearably hot that an afternoon shower was a welcomed relief. With the heat and being two weeks overdue I was miserable. My feet hurt, my back hurt, and I was ready for this baby to arrive. And I hoped that my labor this time would be easier than the first time. I laid Joshua down for his nap and went into the kitchen to figure out what I would fix for dinner. My husband arrived home from work and greeted me with a kiss. As he walked off into the bathroom for a shower I told him that dinner was almost ready. We talked over dinner about his day and the things that went on at home. He was a handsome, well built, Latino man that had been raised in a Christian home, who had taken a job in the painting profession. He told me about things that were going on at the job, most of his work took place in the local refineries. And since we were with a union, he knew most of the painters in our area so there was always juicy gossip to hear. Dinner was served and the dishes were washed. The day had ended, much like many days before. I awoke around three a.m. and found that my water had broken and that I was in labor. Filled with excitement and eager to meet the new member of the family, I woke my husband and called the doctor, he assured me that I had plenty of time and we left for the hospital. The nurses at the hospital were very skilled. And one nurse in particular was insistent that the baby was very small and that I would have to do all the work to deliver. And she was right. I did not know at that time, but I would have actually push him out because he did not have the strength to deliver. After a very trying time and eight hours of labor. Baby Nickolas arrived. He weighed in at seven pounds and ten ounces and was a very “floppy” baby. He seemed so tiny and he had a yellow color to him. He was so small and fragile, helpless and vulnerable. I just wanted to cradle him, I knew that something was very wrong. The nurses were kind enough to let me hold him briefly before they rushed him away. I could see all the fuss that was going on. They drew blood and I could hear him crying.I had no idea that this was only the beginning. He was placed in an incubator and monitored.The doctors there discovered cataracts in both eyes, which Joshua was also born with. Urine samples were taken. The doctors were not sure what was wrong. But they did find high amounts of protein in his urine and traces of blood also. I was not sure what this meant. To my surprise, my innocent little baby was very sick. The doctors at the hospital said that they would refer me to a specialist for the cataract removal. Well, we brought the little one home. Long enough to grab a change of clothes and anything needed for a two hour trip to the doctors in Houston. Once there, the doctors were full of questions, questions that I could not answer. They questioned me about my other child since Joshua was born with cataracts also. But no one had ever said anything about anything else being wrong. I just assumed that Joshuas condition was only cataracts, which were removed when he was two weeks old,but these doctors felt that more testing needed to be done.So both boys were admitted to the hospital. The doctors in Houston took blood and urine samples from Joshua. Looking for any clue as to what might be wrong. Then the eye doctors scheduled the eye surgery for Nickalus for the next morning. They felt that this surgery needed to be done as soon as possible. All of the arrangements were made for the surgery.The eye doctors that we were using thought that we should see a kidney specialist because Joshua had these dark purple circles beneathe his eyes. And they thought that is was due to him being dehydrated but it was not.We would find out later that Joshua was very ill.That his kidneys were not functioning as they should. And still they came at me with all of these questons. It seemed as though they knew more than they were letting onto. I was confused by all the fuss. What was it that I was not being told? Why was this so urgent? Indeed the kidney people wanted their own tests done. So they did, and it seemed to drag on for days. After all that poking and prying, I just wanted to hold my son and forget about it all. I almost felt like my privacy was being invaded. They wanted my family history and wanted to know if I had done any drugs during my pregnancy. They wanted information on my parents. If anyone in my family had any kind of kidney problems or glaucoma. Well, my being nineteen and completely in the dark. I wanted some answers of my own. I did not understand all of their terminology and I kept asking them to explain themselves. After all the testing, a diagnoses was given . My sweet little boy was diagnosed with Fanconis better known as Lowes Syndrome. A disease that robs a child of his childhood. A very cruel, crippling, and unforgiving disease. That usually takes its victims between the ages of ten and twenty.We were one of the families of about 500 in the United States with this syndrome.They went on to tell me how sorry they all were and how I would need help in coping with this disease. But the way that they spoke to me and my husband was really not necessary. Even though I was very young, they talked as if I was unable to deal with this. I mean, what are you supposed to do when you are told that your child is terminal? Or what did they expect me to say.All I could do was cry, and my husband,bless his heart, he was speechless. We just stood there crying, not knowing what to say.And the only confort that we had was each other. So, why my son? he knew no sin, so what could I have done to be deserving of this punishment? Perhaps nothing, but the Lord had a plan all along. Little did I know at that moment, my oldest son was slowly being poisoned by high levels of toxins in his blood blood. But the Lord knew. His kidneys were already damaged from this disease. He had been ill his whole life and we never knew. The doctors there said that if we had been six months later, we may have lost him. Later, we would realize that Nicklas was an Angel sent from Heaven to save Joshua, and to touch everyone around him. Now I have two boys with this crippling disease. Maybe my Nickalus was more than just my little boy, maybe he was a messenger sent from above to show us that the Lord still has a hand in all our lives. But that is not where the story ends, Nickalus is now in his late teens, and the people that he touches never forget that we all have a greater purpose, to do Gods will, and He has used Nickalus as an example, of blind faith. Even though Nickalus has been blind all of his life.He does not know that he is missing anything, he still sees everything around him, without his sight.He accepts everyone and knows no stranger. He sees the good in everyone.And it does not matter whether you have a handicap or not. Regardless to how you look or where you come from,he believes in and trusts in God to take care of us all.And he will tell you that he’ll tell Jesus to take care of you. And though Nickalus was not supposed to live, he has surpassed his life expectancy. And that in itself is a miracle. And for him to look up at me and tell me that Jesus loves him even though he could not possibly know who Jesus is tells me that there is still hope for the unbeliever.I believe that Nickalus will continue to influence the lives of all that surround him. And be a living symbol of Gods love for us. Carolyn Martinez