My name is Karimah. My daughter's name is Kalia Amari Smith. Kalia is in a better place now. She left to be with the lord March 8, 2003.
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Kalia
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Kalia was born Dec 19, 2000 at Portsmouth Naval Hospital in Virginia. She was 7 lbs. 1oz. at birth. From the moment she came out of the wound she didn't like to eat much or at least that's what I thought. Actaully it seemed like she didn't have the ability to suck on her bottle. I kept trying and trying until I felt like she had enough. At her first check-up I told the doctor what was going on. He told me that some babies needed a little extra help when it came to using their muscles. After he looked at Kalia's chart and realized that she hadnt gained an ounce since birth, we knew something was wrong. They did all kinds of blood work and found that my daughter's levels were low. They admitted her to the hospital and after one whole day of nurses and doctor's trying to feed her, they found that she was suffering from some type of metabolic disorder, but what? They kept Kalia in Portsmouth Naval for 3 months. The hospital was my new home. Every type of doctor from Neurology, Hematology, Oncology etc. came to see my daughter and try to figure out why she wasn't growing. In our time there, she underwent all types of testing and they put in an NG tube for feeding. I'll tell you, she was a strong little girl. My Kalia had won the hearts of all the doctors and nurses at Portsmouth Naval. As for me I wasnt that strong, I cried, prayed and hoped to one day find a diagnosis and cure for whatever it was that was keeping my baby from growing.
You see I was 22 years old when Kalia was born, a single parent with a daughter that was 4 years old. On top of that I was an E-4 in the Navy. My command at the time was in Norfolk, VA and they supported me 100 percent as I stayed by my daughter's side. My mother, her boyfriend, my sister, and my brother helped in taking care of my oldest daughter, Imani (who did not have CDGS Carbohydrate Deficient Glycoprotein Syndrome). They all felt the pain that Le-Le, as we would call her was going through.
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Kalia
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My biggest mistake was being humble at the time when I should have been outspoken. After three months at Portsmouth Naval, I was still afraid to tell the doctors, who were Officers in the Navy, that I wanted my daughter to be transferred to a hospital where she can be daignosed. I felt that it would be an insult or some type of disrespect to a senior officer. One day my Operations Officer from work came to see me at the hospital, her name is LT Robinson. I told her how I felt and she taught me not to be afraid. She says when it comes to your child, that officers and chiefs didn't matter. She said that I was the only one that was allowed to make decisions for my child and I had better speak up regardless of rank. After that day, LT Robinson called a meeting with the doctors to find out what their plans were for Kalia. When the meeting was over she told me that they would be transferring my daughter to Walter Reed Army Medical Center in Washington D.C., within the next two days. The day we left Portsmouth, LT Robinson and my family were all there to see us off. She reminded me that I was on my own now and I had to protect my daughter.
When we arrived at Walter Reed there were doctors and nurses waiting for our arrival. They began testing right away. Kalia had all the syptoms of CDG but at the time it was so rare in the U.S. She suffered from mild seizures, to where only one side of here body would begin to twitch, sometimes it was only her face and one eye. There was a doctor that dedicated his whole weekend to reading and internet research and for the love of me I cannot remember his name. After two weeks of testing and research Kalia's doctor came to me to talk about what he had found. He said that samples had to be sent off to the Mayo Clinic to make a definite diagnosis. He was pretty confident that he had discovered what was going on with my daughter and he was right. The test came back positive for CDGS type 1a. I had so many questions, but because CDGS was so rare there were little to no answers out there. The doctors at Walter Reed called on Dr. Donna Krasnewich to come over and meet myslef and Kalia, she is a Clinical Biochemical Genetisist and Pediatrician, who works for NIH (National Institutes of Health). She was a very pleasant woman and I was so happy that she took time out of her busy schedule to help in the diagnosis of my daughter.
When I learned that there was no cure for CDGS I cried and cried. I feared that my daughter will not live to be a woman, that was until I found the CDGS support website. I talked with other parents and seen pictures of there children. After joining the site for support I felt confident and I gained the strength to help my daughter fight the disorder and live a normal life.
One month after being at Walter Reed, Kalia and I were ready to go home. Thanks to the doctors at Walter Reed and Dr. Krasnewich, I was thaught the necessary skills I would need to take care of Kalia. One month after arriving home to Norfolk, Virginia, doctors at Portsmouth Naval put in a G-tube so that Kalia could be fed, without an irritaing NG-tube stuck to her face. She hated the NG tube she would always find a way to yank it out. I was given a home nurse for our first week home to show me how to take care of Kalia's shots and feedings. My baby girl had put on a few pounds in a matter of months. She received therapy about 4 times a week to help with here muscle problems. Everything was going great and I finally returned to work. My oldest daughter was in school during the day and I paid my sister to take care of Kalia during working hours. My sister loves children and she adored Kalia. She treated her like a normal child and loved dressing her up to walk around the mall or just go to the park. Taking care of Kalia became her everyday 9 to 5. I felt blessed to have such a sister that loved my kids as much as I do.
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Kalia and Imani
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My sisters weakness for children never stopped she loved every baby and child that she layed eyes on and they loved her the same. In the winter of 2002-2003, my sister befriended the new next door neighbor who had a little boy named Gage. He was about a year younger than Kalia. The neighbor was also a single Navy mom and often called on my sister to help babysit Gage when she goes to work. I was a little skeptical at first, I didnt really care for Kalia being around too many children, afraid that she may catch a cold or virus. One day Gage had a really bad cough and my sister told the neighbor that she had to take Gage to the doctor and that he couldnt return until he was better, she didnt want her neice to get sick. Two days later she returned with Gage and begged my sister to watch him for the day, she said she took him to the doctor and they said he just had a little chest cold. A few days later Kalia began to develop the same cough as Gage. I took here to the Emergency Room as soon as I could. They wanted to send her home, with a bottle of cough syrup. I begged them to admit her until she got better. They finally gave in and there we were living in the hospital again, I couldnt stand it but I knew it was the best place for my daughter. It was Pneumonia and Flu season and I prayed that she didn't have either. After she was admitted they pumped her with Tylenol and IV fluids. Unfortuantely she had Pnuemonia. One week later they wanted to send us home. Kalia's cough was gone but she didnt seem like herself. She was a very cheerful and happy child and after that week I seen nothing but sadness and pain in her eyes. On the day that she was to be released, the Corpsman came in to take her last vital sign before going home. She pulled out an electric temperature probe and started to take my daughter's temperature under her arm. I asked , "Wait a minute what are you doing?". She replied" I'm taking her temp." I said, "No, you need to find a mercury filled thermometer and take her temperature from her rectum. When she did that my daughter's temp was above 102.4. I nearly hit the roof, I said that if they were taking her temp the correct way all day, that they would have seen that she was running a high fever. I began crying and screaming to get a doctor in the room. When the doctor came in I told them what her temp read, the doctor took her temp again and began giving orders to the nurses. They rushed Kalia to the PICU, where they were able to bring her temp down. After all the running and fussing, they allowed me to go into the room with my baby. My eyes filled with tears when I seen her laying on a full-size hospital bed with about 5 IV pumps surrounding her. I talked to her, and told her that everything was going to be alright. She stared at me with here eyes halfway open. She was so tired, I sang to her until she fell asleep.
One week later Kalia was still in the PICU. I couldnt sleep in her room so I made a bed for myself everynight in the lounge. One day, while I was in the room with Kalia the doctors asked all visitors to go to the lounge because they had to do shift turnover. While in the lounge I met this woman who was crying her eyes out. I went to sit by her and comfort her. I figured her child was in the PICU with Kalia. I began to ask her about her child, she told me everything about her 6 year old and how she felt like this time her daughter wasnt going to make it. Apparently, her daughter had been in and out of PICU since birth. I talked with here about Kalia and told her that they were both going to make it and be able to go home soon. All of a sudden, I heard an alarm, it was coming from inside of the PICU, doctors and nurses strormed down the hall into the unit. The lady and I became frightened so we began to go towards the unit. When we got to the door a male nurse told us that we could not come in. One of the doctors came out and said that he needed to talk to me alone. I nearly lost it thinking the worst. He told me that one of Kalia's lungs had collapsed. I began to cry and shout. I didnt know what was going to happen, he told me I had to sit in the lounge and that they are doing everything they can to stabilize my baby. I went to the lounge and called Donna Krasnewich, I told her what was going on and she told me the possiblities when someone's lung collapses. I felt better after talking with her and waited patiently for the news on my daughter. The end of my waiting had arrived and Kalia was fine.
The first few days of the third and last week in the hospital seemed to be bright. I started to prepare for Kalia to come back home. One day I picked up my oldest daughter from my mother's house, to take her shopping for some new shoes. I told here that Kalia was getting better and we could all be home together again. She was so happy, she loved her little sister and she worried about her, but was unable to visit her in the PICU because of her age. We were shopping along when my cell phone rang, it was the hospital. The woman on the other end said, "Ms. Smith, you need to come up to the hospital right away, Kalia's vitals are dropping and they are not coming back up." I dropped everything i had in my hands, grabbed Imani and ran out of the store. I should have gotten a ticket for how fast I was going, but God was watching over us, we made it to the hospital in one peice, and ticketless. When I arrived at Kalia's room there were so many doctors and nurses. They were trying everything. One of the best doctors of the PICU took me outside and told me that Kalia wasnt going to make it. They wanted to know if I wanted to turn off her life support. I believed this doctor because a good friend of mine worked side by side with him everyday and he said that he was the best doctor in the hospital. I called my Auntie Maria who had lost here little boy when he was 4 years old. I told her about the decision that i had to make and she told me not to do it. She said, "If it is God's will, no man or machine can stand in the way of bringing one of his angles home, let him take her if he chooses, do not make the choice for him." After I got off of the phone with my Aunt Maria I became stronger. I had to prepare myself for the worst. I began to call my family and friends. The doctors allowed Imani to come into the room to be with me and her sister in her final hours. As each minute passed Kalia's vitals dropped, and the room filled up with family and friends. My pastor came in and we all surrounded Kalia and prayed. The room was so quiet after the prayer, I layed next to my baby and wept as her vitals steadily dropped. I kissed her lips and they were so cold. Then the moment came when the life support was no longer able to keep Kalia alive. The nurses began to disconnect all of her IVs. They asked if I wanted to hold her one last time. They brought over a rocking chair and I sat down. They wrapped her in her favorite tweety bird blanket and layed her in my lap. I thought back to the day she was born and the same ritual took place. She looked so peacful and beautiful. Imani came over and sat on my lap and we held Kalia toghether. Everyone stepped out of the room as we spent our final moment with Le-Le. I cried over my daughter's body with my cheek pressed against her cheek. Suddenly, the sign came that she was truly gone. A drop a blood came strolling out of her nose. Thats when I imagined God lifting her out of my arms. She died at 1500 that Saturday.
The Funeral
Kalia's funeral was beautiful. There were so many people that showed up to pay their last respects to my little girl. People who's heart she warmed with her loving smile, from 7-eleven and Mall employees, close friends, nurses, doctors, therapists, and my command paid their respects in Full Dress Blue uniforms from the youngest seaman to CAPT Elizabeth Hight the Commanding Officer of NCTAMS LANT. Those who couldnt make it sent beautiful bouqets of flowers and teddy bears, including LT Terry Robinson who was on deployment at the time and Dr. Donna Krasnewich.
Kalia was so pretty. Imani and I spent a whole day searching for the perfect dress. It had a pink silk top with a pom-pom white sheer bottom the had artifical rose pedals inside of it. She wore light pink stocking tights,and white shoes with little pink roses. Her hair was pulled into one with a band of roses around her head. She looked like the angel that she is today.
The Road to Forgiveness and Understanding
After Kalias funeral I stayed away from work for 3 weeks I cried everday and I couldnt understand why God had to take my baby. She was only two years old and despite her condition Kalia had a great future ahead of her. Imani and I had to undergo therapy for a very long time and today it helps to talk about Le-Le. When I talk about her my voice trembles, trying to hold back tears but I remain smiling, for I now know that everything happens for a reason. Kalia was put on this earth to bring my family closer together. To brighten the lives of every one that she has ever met or heard about her and to make me stronger. Her pictures go with me wherever I go .
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Kalia
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Anyone that is willing to listen, receives an ear full of how proud I am of my little soldier girl. She fought until God called her home.
Today, I am stationed in Jacksonville, FL. Imani is now nine soon to be ten years old. We celebrate Kalia's birthday every year on December 19th and her passing on March 8th. The memories help us grow stronger so we keep them alive.
I want to thank everyone that was there for us in our time of need. All the doctors and nurses, and corpsman at Portsmouth Naval Hospital and Walter Reed Army Medical Center, The Mayo Clinic, Dr. Krasnewich, co-workers, LT Robinson, my sister Naeemah for taking care of Kalia, my Mother, and all of my family. All of the people that came out of the woodworks to see Kalia go home. And most of all God.
"To everything there is a season, and a time
To every purpose under the heaven.
Ecclesiastes 3:1
eff: 04/06/06