Our Little Fighter
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Our Little Fighter
We came back from Philadelphia, with our minds cluttered with thoughts of how our family and lifestyle will undergo some radical changes to help Cyndy prosper. Our hearts were heavy with sorrow that Cyndy was going to have health issues; we knew that there was only God that could help us through the next weeks, months and years with Cyndy. The Lord would see us through the demanding times that were to come. With His help Cyndy would be able to walk talk and learn. Many tasks were very hard for her to learn yet, numerous of skills were mastered and some were partially mastered. We were very thankful to the Lord for everything she did. It was by His grace only that she could accomplish things.
The first thing on our agenda was to enroll Cyndy in a state-run infant program where specialists could work with Cyndy to help stimulate her basic physical and mental development. The program incorporates speech and physical therapy, which was designed to stimulate Cyndy’s cognitive skills. Whereas normal babies would develop gross motor skills on their own, Cyndy, who was already fifteen months old, had to learn to sit and stand with the help of these specialists. The infant specialists gave us the prognosis that Cyndy probably wouldn’t walk by herself if she ever would walk at all. Hearing the professionals talk about all the things Cyndy supposedly could not do angered me to no end. The more the experts would tell me what Cyndy couldn’t do, the more determined I was that my baby girl was going to sit and walk with God’s help.
One of the many drugs Cyndy was on was Phenobarbital, it was use to help control her seizures, but it tended to make her lightheaded and unfocused. OH Boy! was she hyperactive on that drug; she just could not sit still or stay in one place for very long even if she wanted to stay still. I remember one doctor’s visit when we went to Dr. Chaves, he had put Cyndy on his lap, and he could not hold her down long enough to examine her very well. Cyndy always had to be on the move. The effects of this particular drug prevented Cyndy from making any real progress in sitting or walking without help. In order to give Cyndy a chance to be able to walk, we asked our doctors to take her off Phenobarbital and substitute with use of another drug instead. Once Cyndy’s medication was changed, things started happening where she was able to master sitting and walking with little problems.
Cyndy became our little miracle. Our trust in God was made stronger as we saw God’s mercy on Cyndy. I could not see it at first, because I actually was looking for Christ’s grace in the midst of our hard situations. My heart was set on seeing God do total healing and not anything less. Once I was able to look at the small progress I could see God’s hand at work. Nevertheless, as the psalmist says in Psalm 36:5-6, “Thy mercy, O Lord, is in the heavens; and Thy faithfulness reacheth unto the clouds. Thy righteousness is like the great mountains; Thy judgments are a great deep: O Lord, Thou preservest man and beast. How excellent is Thy loving-kindness, O God! Therefore, the childrens of men put their trust under the shadow of thy wings.”
The consultants from the infant program worked with Cyndy three days a week for an hour each time patterning Cyndy to be able to pick-up new skills. On occasion, Cyndy saw a therapist twice during the same day. These workers taught me ways that I could help pattern my daughter, to help strengthen her legs to be able to sit and walk. Now that I was personally involved in Cyndy’s therapy, we worked intensely together to help the betterment of Cyndy. I used pillows has props assisting her with sitting up, encouraging her with rewards through out the entire day. Once she was able to sit on her own, we worked on pulling up to a standing position.
I will never forget the day that Cyndy surprised us with pulling up by her self in the playpen; our hearts were filled with joy and laugher that all the relentless work of trying to teach her had paid off. We had been to the mountains of Virginia, and I had placed her in the playpen when we came in the house, after getting the luggage out of the car. When I came in, Cyndy was standing up in the playpen! O did the tears flow! All I could do was cry for a while since I had seen Cyndy stand. One of our prayers had been answered, and we had countless more prayers for God to help Cyndy learn more skills. We were praising God for weeks for her growth and development.
Some days Cyndy would cry and protest, but I just would not let her give in. It took us several months to master sitting and pulling up. Cyndy enjoyed rewards of praises and cookies. Clapping her hands together and shouting “yea” in delight, she thought she had conquered the world. When I think back to Cyndy, she and her mom were two of a kind. At times, I would throw my hands up in the air, ready to give up when something did not go my way. Then there were times when I would not give up, and I would continue to fight. I would keep going until I had succeeded.
The next big hurdle was learning to stand-alone. By this time, Cyndy was about twenty months old. I had been contemplating on what can be done to help Cyndy stand alone, when a thought came about getting a fish tank. I went out to the pet store, bought a fish tank, and put large goldfish in the tank so Cyndy could see them. The day I brought the tank home, I caught Cyndy standing at the tank looking at the fish. She was so engrossed with the fish that she ended up taking her hands off the tank and standing alone for about twenty minutes before she realized what she was doing!
I was so proud of her for standing by herself. However, once she realized that she was standing alone, she would fall down. Over the next few days, Cyndy was completely mesmerized by the fish tank, and she would spend lots of time standing alone. She finally got to the point where she knew she was standing and could hold her position without falling. We witness a true a miracle with her physical development progressing as much as it did. Yet we still had to face the biggest challenge--walking.
This still was a trying time as we were trying to find a med that would stop her seizures. She was on one med that kept her from seizuring for about three months and then she would regress. Yet the seizures were shorter then they had been, and we were able to control the seizures at home instead of having to take her to the hospital all the time.
Learning to walk took lots of work and divine intervention! Cyndy was so stubborn that she would just sit in the middle of the floor. We let Cyndy use a walker so that she could move around the room and feel a little more secure. The walker was against the physical therapist’s advice, but Mark and I were willing to try anything to help Cyndy learn to walk. Finally, I had to entice her with a bottle, and every time she came close to me, I moved back a step or two to encourage her to walk toward me. When she came to me, I gave her bottle to her, clapped my hands, said “yea” to her, and gave her a big hug. Cyndy would smile with tears in her big blue eyes.
She started walking after two weeks of working nonstop with her in this fashion. Cyndy was about twenty-one months old at this time. Once she began to walk, there was no stopping her from getting around. Cyndy found out that walking gave her more freedom. As thankful as we were that she had learned to walk, we were not sure if it was a blessing now that she could get around and into our things!
Learning to walk gave Cyndy a chance to run when she wanted to. She ended up being rather swift on her feet while she was young. As she got older, she got to a point when she kept falling over her feet. Her legs became weak, and she would fall frequently, sometime even injuring herself. I will never forget the time she tripped and hit her head on a coffee table and had to have stitches!
Talking proved to be too much of a challenge for Cyndy. We prayed and prayed for her ability to speak. However, God did not choose to allow Cyndy to communicate verbally here on earth. She did learn a few words, such as “eye,” “nose,” “ear,” and “mouth,” and at the end of her life, she had begun to say “hair.” She loved to name the parts of her face to anyone who would listen. However, she never did learn to truly dialogue with another person through talking.
Cyndy found her own way to communicate her needs and desires. She learned to wave goodbye, although she turned her hand toward herself. Cyndy would gesture to let you know what she wanted, such as taking you to the sink for water or grabbing your hands to play patty cake, a game that she adored. You could tell that she really knew the order of the motions, because if you tried to leave some out, she would not let you. Cyndy had to be saying patty cake in her head because she never forgot a single motion. She would grip my hands and insist on playing patty cake many times a day. I just could not turn her down.
Cyndy had a stubborn nature, and a strong will, she always would surprised us with what she could accomplish just by working hard and wanting it badly enough. God had given her a determined spirit and a strong will to live. By the grace of God, she was able to live as long as she did and accomplish things that many thought were impossible for her to achieve. People saying she couldn’t attain things made her a fighter, where nothing could hold her down. Even when she was incredibly sick, Cyndy was eager to be on the go.
Cyndy had such a strong spirit of wanting to be on the go constantly unless Cyndy was sick, and even then, she would only be down long enough to get a nap to regain her energy, then she would be back on the go again. While at times she would be put in the hospital, for seizures and infections, Cyndy would be hydrated through an IV, and antibiotics given intravenously, and then she would be climbing out of the crib and making her way to the elevator. She would cry until Dr. White would come in and take her out of the crib, and carry her on rounds with him. Dr. White told me that he couldn’t look Cyndy directly in the eyes when she was in her crib, because she would melt him with her puppy dog eyes. He would then be forced to take her out of the crib and let her make rounds with him until she was tired or he was finished making them and ready to leave the hospital.
Thank you, Lord, for giving us the determination to live and to be able to get up and go each day. Thank you for the ability to walk, talk, and worship you.
In Christ, Amen.
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Anne, this is just a wonderful story you have shared with us. I could visualize Cyndy as she progressed through each stage and was ready for the next. What a wonderful little girl. Thank you for sharing your courage, faith, and determination with us. Thomas, www.dustonthebible.com