GIVE KIDS THE WORLD

 There was only one thing that kept Jasmine's attention for more than a couple of minutes, and that was The Disney Channel. She watched HigglyTown Heroes, Jo Jo's Circus, Little Einsteins, and The Wiggles, but her favorite show was The Mickey Mouse Show. She recognized his voice immediately and would smile and dance to the music. It was fun to watch her when the theme songs to her favorite shows would come on, because her face would light up with recognition. Jasmine was chosen by The Marty Lyon Foundation to make a wish, so we knew what she would say if she could talk. She loved all the Disney Characters, so they gave us a trip to Disney World! It wasn't just a trip to Disney World, it was a trip to Give Kids The World. This is a gated community in Kissimmee, Florida, which is run by mostly volunteers for children with serious illnesses. Although Jasmine wasn't terminal, it is also for children who struggle on a daily basis to have a normal childhood. This trip was the most magical trip that anyone could imagine. First, they made all the preparations for us, finding out when was a good time for us to go. They bought airline tickets for me, Jack, Jill, and Jasmine. There was a car to pick us up the day of the trip and drove us to the airport. There to meet us at the airport in Florida was a staff member from Give Kids The World, holding up a big sign with Jasmine's name on it. From there they gave us all our instructions, gave us a rental van for the week, and off we went. When we got to GKTW, we were let in through the secured entry, and went to check in. The check in center was so cute and friendly, as were all the people. They gave us a key to our villa, along with a stuffed Mickey for Jasmine, and tickets to all the parks we wanted to go to. The villa had a kitchen, big living room, two bedrooms,a bathroom and another huge handicapped accessible bathroom. The refrigerator was stocked with milk, juice, coffee cake and snacks. Right outside our villa was a pool. There was a train that drove around the town, picking people up right at the end of the driveway, and driving them to The Gingerbread House to eat, or to just take you for a ride. Jasmine loves train rides, so we did that alot. There was so much right there that if we never went anywhere, we still would have had a good time. I am sure that people who bring very sick children stay right on the premises and have the time of their life. There was another pool on the other side of where we stayed that had a walk in handicapped entry. There was a water park for wheelchairs. Everything there was free. You had three meals a day, all family style and something for everyone. There was an all day Pizza Parlor that delivered to your door. One of my favorite places was The Ice Cream Palace, where from seven or eight o'clock in the morning until the evening, you could go in and have an ice cream sundae, banana split, or any kind of ice cream you desired.They also had sandwiches, chips, hot dogs,drinks and snacks if you were looking for a light lunch. Walking around we discovered many more pleasant surprises. There was a little movie theatre, where they gave you popcorn, icees, and candy for the show. There was The Castle of Miracles,which on the outside had a carousel ride, and inside looked just like a real castle. Inside, they wrote Jasmine's name on a star, and high up on the castle ceiling were thousands upon thousands of shiny stars with past visitors names on them. It was the most beautiful and moving thing I have ever seen. On certain days you could go for a pony ride, which Jasmine did and loved. After the ride was over, they gave her a cowboy hat. They didn't miss a thing! There was a butterfly garden, miniature golf, a teen lounge with computers and a big television, a boat room where it looked like you were on a ship and drove the remote control boats that were out on the water. There was a room with a whole town with model trains. All you had to do is press a button and the town would come to life, with the trains going up and down through mountains and tunnels.There was a fishing dock, and a boat to take you for a ride on the lake. There was even a game room with a pool table.Everything was wheelchair accessible, which made things so much easier for many people. My favorite place was The Chapel. It was a quiet room where you could go in and sit and thank God for all that is good. There was soft music playing, and it made me feel calm and happy. They had a book for the families to write in, and encouraged everyone to write something in it. Many of the entries were beautiful but sad. Every morning there was a little coffee wagon that would come around to all the villas and offer coffee, donuts, bagels, cereal and fruit. We would go out to the parks in the morning, come back in the afternoon and take a break and swim, and then go back in the evening after we were rested. When we would return from our afternoon in the park, everything in the villa would be cleaned. On the kitchen table, there would always be a gift for Jasmine. I am not talking about a dollar store gift. They were all unbelievable toys and stuffed animals. The generosity was overwhelming. Every night was a different theme, a life sized Candy Land Game one night, Christmas another, including a visit with Santa in the big castle, and of course, a gift! Jasmine had VIP treatment in all the parks, having private meetings with her favorite characters. We had a special pass to go inside when we needed to change her or feed her. There we were offered drinks, and a cool, quiet place to just sit and rest. We didn't have to wait in any lines, and had a front row seat to the parade in Magic Kingdom followed by the spectacular fireworks. The whole time we were there, all I kept thinking about was the fact that she could have ended up in a hospital for her whole life, and would never have had this experience. It made me feel really good. I also felt good because she had just turned four years old and when we returned, we were going to formally adopt Jasmine!

MEDICAL EQUIPMENT

I had no idea how much equipment was going to be needed for Jasmine. In the beginning I needed her kiddie wheel chair, a high chair, and a crib. I had to get a shower stretcher for her because I couldn't submerge her in the bathtub. I needed two hands to bathe her as you would a newborn. She couldn't hold herself up at all, so I had to strap her in to bathe her. I also had to get an IV pole to hang her bag with her pediasure in it so I could tube feed her.This made it easier because I could take it from room to room.  I needed a nebulizer  because she needed breathing treatments three times a day. We had to get a stander for her because she needed to stand everyday so her legs could get stronger. It was a very big piece of equipment, and hard to get her in it. You had to lay it down, put her on it, strap her chest, hips, knees, and feet, and then pull it up so she was standing. There was a tray attached to it so she could look at toys to distract her while she was standing. It was alot of work for her to stand, even though she wasn't  standing on her own. We had to put her in it everyday. Then she had a Dynasplint for her hips. After Jasmine would fall asleep, I had to put this on her to keep her hips rotated. It was extremely uncomfortable but was necessary to keep her hips from coming out of the hip joint. We had to get a special car seat which had extra support for her head and on the sides so she wouldn't fall over. We also had a portable stroller, which was adapted to her needs.  Later on we got her a chair called "The Special Tomato", which was a very foamy comfy chair she could sit in to do some of her activities. One day when I talked to her teacher they told me that they had her in a "pony" which was a little gait trainer, and Jasmine was actually taking some steps in it. So that was next on my list of things to get for her. The procedure to get durable medical equipment is a very long process. I took her to Children's to order the pony. She had to be measured and to see what extra attachments she needed,like a head rest and extra neck and back support. Then we had to get a prescription from her pediatrician, along with a letter of medical necessity. Then it was submitted to the insurance company, which goes through different departments there. By the time some of her equipment is approved, she needs to be remeasured for the next size up. On an average, it can take six months to a year to finally get the equipment. I am not complaining because our insurance has covered just about everything , but it is frustrating when I am anxious for Jasmine to get what she needs. Our house was getting smaller and smaller with all of Jasmine's equipment lined up, but she was slowly getting stronger.

PATIENCE AND FAITH

Everything that happens in your life is in preparation for your future. It builds your character, and strengthens your mind and your faith. When I was young I lost a boyfriend to a tragic accident, experienced a broken heart and the loss of a few good friends. I gave birth to two preemies,my firstborn weighing only two and a half pounds, and Jill weighing in at a mere one and a half pounds. I went through a bitter divorce, and later had two very rebellious teenagers. Then came Jill's accident and the aftermath that we are still dealing with to this day.You can let it wear you down, or you can let it build you up. I chose to learn from all of my tragedies, and make something good come out of it. So the letters, phone calls, and delays for Jasmine's adoption were another test of my patience and faith. You can ask anyone, I am not someone with much patience. When I want something, I am like a little kid. (ask my parents) I want it now! So the next year was a real test for me. We would send in the required papers to the state, and they would lose them. This happened so often that Jack finally started making quadruple copies of everything and hand delivered them to each department that needed them. They all knew him in Newark, so when he called them they definitely knew who he was! I was so worried that this might never happen. I was in my fifties, and what if a family member stepped forward and wanted Jasmine? She needed so much care, and I was afraid that they would take her and just put her back in long term care. We had to go through the process of having the parents' rights terminated. The father was no problem because he was in jail, and denied that he was her father. He gladly signed the papers. Her birth mother was another story. She was not willing to sign anything. We even went to Newark to meet her and her sister with a mediator present. I handed Jasmine to her, and she held her as if I had handed her any one's child. I gave her pictures of Jasmine, and told her if she would like to keep in touch with us, that I would gladly do so. Her sister said they would have to consult with the rest of the family to see if it would be an option for us to adopt her. (meanwhile, not ONE family member ever made an attempt to see her even once!) I have to admit that the next thing I did was to scare her mother a little. It was time for Jasmine's feeding so we whipped out all of her equipment to "hook her up". I told her mother she could continue to hold her while I hooked up her feeding tube, but she handed her back quickly. She said she had to leave, and she and her sister got up and left before they even said good bye. Clearly, she was not interested in caring for Jasmine. We had to wait out the time it would take for the state to revoke her rights as her mother. So that's what we did. We waited and waited, but at least we had Jasmine.

PRESCHOOL

 

Jasmine started preschool towards the end of September. I had a very hard time sending her, because we had been inseparable for over a year, and I didn't want to lose that bond that we had formed. I cringed when the big yellow bus pulled up and lowered the chairlift down to receive her. The bus driver was very nice, and so was the bus aide. They reassured me that she would be fine, but I don't think I was even listening to them. Here was my little three year old going off to a strange place without me, and they really didn't know anything about her. Jasmine was strictly tube fed, and if the drip was not at the exact speed and it went a fraction of an inch faster, she would projectile her whole feed. She only cried when something was hurting her, and she loved to kick her feet to the music. Jasmine loved to be outdoors and startled easily. How were they going to be able to take as good care of her as me?  I really hadn't needed to worry. They all welcomed her with open arms, and obviously had quite a bit of experience with children like Jasmine. Although each child is unique with their different set of problems, they quickly saw what Jasmine's set of needs were and met them every day. (with alot of frantic phone calls from me) Jasmine's preschool teacher's name was Miss Helen, and I owe much of Jasmine's progress to her and her staff of aides. Miss Helen treated all of her kids as if they understood everything, and if they didn't she took the time to try. During circle time when they would say The Pledge Of Allegiance, and sing You're a Grand Old Flag, there would be someone right beside Jasmine holding her hand over her heart for her and helping her to wave her flag. The No Child Left Behind act was definitely followed there! The children went trick or treating on Halloween at a complex next to their school, and collected coloring books, crayons, and juice. They took them pumpkin picking and went on a hayride. They went bowling, ice skating, and a trip to the Mall to visit Santa Claus. I do admit that I didn't let her go on some of those trips unless I went because I couldn't bare the thought of her getting on yet another bus and going somewhere without me! I would meet them at the pumpkin patch and the mall, and enjoy the trips with her. I am sure that I was that overprotective "Mom", but I didn't care what anyone thought. My main goal was to make sure that Jasmine was a happy little girl, even if I had to make a fool of myself sometimes. When Jasmine went back to school, I returned to work. Jasmine would get picked up in front of our house, I would kiss her goodbye, jump in my car, go to work (which happened to be two minutes from her school) and get home right before the bus brought her home in the afternoon. If she was sick, I was just a stones throw away, and would pick her up and take her home. During her first year at school and me back at work, Jack was busy working and doing all the leg work for  the adoption preparations.

"FLORIDA"

The first year that Jasmine was with us was full of surprises. Some good, and some not so good. There was always someone in the house that would have a mysterious round red circle on their arm after holding Jasmine. You probably have guessed where I am going with this. Jasmine brought home more from the hospital than just her clothes. She also brought home a case of ringworm that did not want to leave. Just when it looked like it was gone, someone else would end up with it. It was the gift that kept on giving! It became somewhat of a joke in our house, waiting to see who the next victim would be. Jack even got one on his face, which for some reason really made me laugh! The sad problem was that she could not go to school until she was free and clear of all ringworm. Darn! I was so looking forward to sending her to school all summer. Sadly, Jasmine was not able to go to school ALL summer. I would take her to the doctor to have her cleared, and he would say,"Let's just wait a couple more weeks to make sure." I was more than happy to oblige. The only real problem was that it had gotten so bad on Jasmine's scalp, that I couldn't even apply the medicine because she had such a thick head of hair. The only way we were going to get rid of it was to cut off all her hair. So we did.  I really didn't have a choice. It was to either have a full head of hair with polka dots all over her and everyone who came into contact with her, or a "crew cut" and clear skin. I opted for the second. I went to a beauty parlor by my Mom's, sat Jasmine on my lap in the chair, and they shaved off all her hair. She cried so loud that I think we scared off most of the clientele that was there, so they probably wouldn't be too thrilled if I ever tried to make another appointment. Now I was able to apply the medication to her scalp, and it slowly started to get better. When I brought Jasmine to my mother's, Jasmine's nickname went from "Jazzy" to "Florida". Apparently she was the mother on Good Times. It took a long time for her hair to grow back, hence a long time to lose her new nickname.

THREE YEARS OLD!

When Jasmine was two and a half years old, the social worker informed me that I should start looking for a preschool for Jasmine. The early intervention program was only available to her until she was three, and then she would need to go to school. I was not very happy to hear that, since I had never sent my own children to preschool. I wanted my kids at home with me their first years of life. After all, they would be going to school for a long time. I never understood mothers that couldn't WAIT to get their "life back",anxiously signing their three year old up for school. I kind of went into panic mode. Why did she have to go? Since she was a foster child, I had to listen to what they told me to do. I checked out our local school district's program, and it was clearly not suitable for Jasmine. The kids were walking and talking and had some delays, but none as severe as Jasmine's.The preschool was for two and a half hours every day, and they said they would have to pull Jasmine aside for her tube feeding. That in itself was very time consuming, taking around forty five minutes to finish. That wouldn't leave her much time for any activities. My friend Karen told me about a private school that she had heard about called The Lehmann School, which was not far from our house. I set up an appointment with the school district and Lehmann, and went to scope it out. What I saw was sad and happy, all rolled into one. Some of the students were sitting in chairs, looking like they had no idea what was going on. There was equipment everywhere, along with students, teachers and aides. Everyone was so friendly, and clearly were there because they wanted to be. I was hesitant about the school, because I wanted Jasmine to be around able bodied children so she would one day become one of them. Well, that's not how it works. The more I saw, the more impressed I was with the school. They clearly were commited to these children. They had full time nurses and therapists and were very eager to have her. The school called me shortly after and told me that Jasmine was approved for the program which would be paid for by our school district, and she could start after her third birthday. I was so upset. I was just getting into a routine with Jasmine, enjoying every minute I was with her. She would be picked up on a bus, right at the end of our driveway. I never had to send my kids on a bus until they were in junior high school. How was I going to send a little three year old in a wheelchair on a bus all by herself? Well, as luck would have it, God gave me a few extra months before she would have to go.

FORGIVENESS

This picture stands for so many things. I am celebrating Christmas with my youngest daughter who very well could have been taken away from me that night in April a year and a half ago.It also represents a little girl who might have  spent her whole life inside a hospital without a family. But what this picture really stands for is a whole lot more. For that past year and a half after her accident, Jill was not feeling any better. She hurt all the time. She had pain in her groin area from her pelvis that she had broken. She had back pain as well as pain going down both of her legs and feet, and pain in her hand. She also had some cognitive issues, so her school work was not easy for her like it was before. Jill tried every type of therapy imaginable. She tried acupuncture, aquatic therapy, biofeedback, and traditional therapy. We went from doctor to doctor trying to find out what we could do to ease her pain. No one really had an answer. The bones were healed, and she could have nerve or muscle tissue damage. They all tried to prescribe her narcotics, but she would take them very sparingly because she did not want to become addicted to them. While she was going through all of this, she had another issue she needed to deal with. She really wanted to meet the man who was driving the pick up truck, because she wanted to tell him that she forgave him. She made a copy of herself and Jasmine sitting on Santa Claus's lap, composed a letter and mailed it to him. She wanted to let him know that everything happens for a reason and that something very wonderful came out of this tragic event. She thought that if he felt guilty, that this would make him feel better. He has never responded to her, and that has left her wondering if he really felt bad at all. I think that if she could meet him face to face, she could put this all behind her. It's like a piece of unfinished business I guess. Jill is a very special person for setting her own feelings aside to write to a stranger who changed the course of her life forever. Once again, Jill truly amazes me.