THE DIVISION OF YOUTH AND FAMILY SERVICES (DYFS)

 

While Jasmine was enjoying her new life as a Muldowney, our house was becoming smaller and smaller with all her equipment that we were accumulating. When we adopted Jasmine DYFS told us that if we needed help with things for Jasmine as she got older that the state would help us as much as they could. I know that DYFS only gets bad publicity, so I would like to say that they have some really great people working there, and that they really do have such a heavy case load that I can imagine how things can get mixed up sometimes.Not to say that there are some who don't do their job, but that is true in any profession. I took DYFS up on their offer and told them that it was getting harder for us to get Jasmine in and out of the car. Lifting her from her chair to her car seat, and back out again into her chair, and collapsing her chair and lifting it into the back of my car, was very exhausting. I asked them if they could help me in any way get a handicapped accessible van. After estimates from a few dealers and alot of paperwork, they offered to pay for the conversion part of the van, which is around twenty thousand dollars. I had to trade in my car, and then submitted the paperwork to The Children's Catastrophic Fund, and they also chipped in to help defer the cost after we purchased the van. This van has saved my life (not to mention my back) They also paid to have a ramp put on the front of our house. Then I requested to get help with renovating one of our five bedrooms into a handicapped bathroom. Again, we had to submit three estimates and they offered to pay to have the room changed into a bathroom! I lost a bedroom, but I didn't care. I was then able to put Jasmine on a shower stretcher and just roll her right into the shower. The room is big, so I have plenty of room to move her around in her chair. That was my second request that was answered from the State of New Jersey. I felt a little guilty that I was so lucky to have all of this for Jasmine, but I was reassured by many that I was saving the state a whole lot more than that, because if she was in a hospital it would cost the state that much in one month.I was still very appreciative and was so happy that they made my life easier. Our house is a ranch, and unfortunately my bedroom was on one side of the house, and Jasmine's was on the opposite side. Jack installed a camera in her room pointing directly at her bed, and had monitors placed throughout the house. We had one in the dining room, one right next to the television in the living room, and one right next to my bed. I had it magnified so I could see her face up close and personal, like she was right next to me. I could hear her breathing, and when she started choking on her saliva which she did quite frequently, I would jump out of bed and run through the house to get to her room. Unfortunately, this happened throughout the night so I never really was able to fall into a deep sleep. It was getting to the point that I either slept in her room in a chair, or would put her in bed with us so I didn't have to sprint to her room in the middle of the night. This went on for quite some time. I decided I was going to call my "friend" at DYFS, an adoption subsidy worker who had done so much to help us in the past, and ask her if she thought that they could help us with an addition so we could put Jasmine's room right next to ours. I felt funny asking, but it was all for Jasmine, and she was going to need more room for home therapy and to walk in her kid walk, and have a safe place to live for many years. I have to mention that I have a hard time asking to borrow even a dollar from someone for myself, but when it came to Jasmine, I became a different person. I was her advocate, and I knew she deserved to have the best of everything. I had no problem asking. Jack thought I was crazy, (not the first time) but I figured there was no harm in trying. I called her subsidy worker and told her my idea. She told me to put it in writing, explaining what Jasmine needed and why, and gave me a name and an address to send it to. I typed my letter, sent it certified mail, and waited for a reply. Like many times before, I had a positive outlook on everything pertaining to Jasmine, because I knew that God was looking out for her. Maybe a month or so later, I received the phone call I had been waiting for. Jasmine's subsidy worker told me that it had been approved, and I should send in three estimates for an addition for Jasmine's new room!  I knew where I wanted the room,(there was really only one place that would be feasible) so we had the estimates drawn up. The addition was 21 by 30, and would have a door leading from my room to her room, and a doorway from the kitchen into her room. We sent the estimates in, and eventually got the OK. It probably took almost a year from start to finish because we had some permit issues, but the addition was built, and Jasmine had her new room! I am forever grateful to The State of New Jersey for giving Jasmine a room she can grow up in and live for the rest of her life. I only wish that they could help more people with disabled children make their life as easy as they have made ours. 

HYPERBARIC OXYGEN THERAPY

My youngest brother Billy is a chiropractor and was very interested in Jasmine's progress. He gave us information on hyperbaric oxygen therapy, and said that there had been good results with children with cerebral palsy and hyperbaric oxygen therapy. There were only a handful of places where you could go for treatment, one being in Pennsylvania, and others out west and in Florida. The term hyperbaric comes from the Greek word for pressure. What is administered in a hyperbaric chamber is oxygen. The idea is to reactivate  idling, dormant brain cells and to produce a more desirable environment for the growth of neuronal cells.We did alot of research on the subject, and looked at and called many treatment centers. I had decided on a place in Canada, which would be for two weeks where I would live at the facility with Jasmine. I was not looking forward to being away that long, but we went ahead and made the deposit for the  "Abilities Camp." Jasmine had just turned five and we really wanted to to try as many things as possible to help her meet her full potential. Jasmine relied solely on her feeding tube for most of her life. The speech therapist at school and I both tried trial testing of pureed foods, with Jasmine gagging most of the time when the spoon neared her mouth. Slowly but surely with alot of exercises around her face, she was getting a little less sensitive to things being near her mouth.  The amount of pureed food she would eat was very minimal. If she took a couple of spoonfuls at one time, we were thrilled. So the thought of Jasmine having the hyperbaric oxygen therapy to help her further along was very exciting. While I was mentally preparing for my trip to Canada, Jack found a facility forty five minutes away that did mild hyperbaric oxygen therapy.This was still 100 percent oxygen, but a milder pressure. We made an appointment and took Jasmine and Jill for a session. Jasmine could not go in by herself because if she started choking or gagging, the chamber would have to be depressurized before we could get her out. Jill offered to go in with her and I figured we would be getting two for the price of one! We went and talked to the doctor, and they went in for the treatment. We had to bring ear plugs with us that you would wear on a plane for take off and landing, so it wouldn't hurt their ears. Jill and Jasmine got in, the technician pressurized the chamber which took around twelve or fifteen minutes,(you have to do it slowly) and they stayed in for around forty five minutes. Jasmine was as happy as could be, not scared or bothered by any of it. Now we knew that she would go in a smaller chamber. The chamber that she would go in at the abilities camp would be a walk in one that seats maybe six people. We talked about what we should do, and we decided that instead of spending alot of money for a one shot deal, that we would spend four times more and purchase a chamber for home. Jack borrowed from his retirement fund and we got a prescription from the doctor and ordered the chamber. When it was delivered, the same technician that introduced Jill and Jasmine to it the first time, came over and set it up for us. We were on our way. Well, kind of on our way. I went to climb in the chamber, and went into complete panic mode when Jack started to zip it up. I jumped out so fast, knowing I would not go back in again. I think Jack thought I was kidding, but I wasn't. Just the thought of it now makes me panic. The technician tried to make me feel bad because he said you would be surprised the fears parents overcome to help their kids. Sorry, but this was one fear I have yet to overcome. So, this became an hour for father and daughter. I was the technician, pressurizing the chamber, and timing how long they would stay in for. Jasmine had her DVD player to watch inside along with her chewy toy, and Jack had his cell phone. We were a team, and luckily I was not the inside part of that team! The more treatments Jasmine had, the more alert she became. She seemed to see better, eat better, and started saying some words. No one was going to tell me that it wasn't because of her hyperbaric oxygen treatments. Her teacher and therapists noticed the changes in her as well, and I couldn't have been happier. I am very glad that my brother took the time to give me probably the best advice I have ever gotten for Jasmine.

HIP OPERATION AND RECOVERY

 In January, Jasmine went for her double hip surgery. She had it done in the Children's part of Robert Wood Johnson in New Brunswick, and I have to say everyone was very nice. The nurses had me put scrubs on, and I was allowed to go into the operating room with Jasmine to hold her hand while they gave her anesthesia. I was thankful that I was there for her, but I had a very hard time holding back my tears and fears. The operation itself took a few hours, and the waiting was very hard. Since Jasmine's hip joints were pulling away from the socket, they had to make very large incisions on both sides of her hips to put the hip in place with hinges that looked like something you would put on your kitchen cabinets. Thank goodness I didn't see what they looked like until they removed them a year and a half later. What came next was somewhat  unexpected even though it was explained to me before hand. We were called into the recovery room and there was Jasmine with casts on both legs. They started all the way at the top, and ended to the tips of her toes. Holding her legs apart was a stick that looked like it came from the end of a broom. This was going to be her position for the next six weeks. When she was released from the hospital a few days later, I knew I was going to be very busy for the next six weeks. Jasmine was brought home in an ambulance, because she had to be on a stretcher since she couldn't sit up. She was in excruciating pain, and would be for a long time. I had to give her pain medication every four to six hours, just to keep her semi comfortable. We needed two people to change her, because just to move her a little made her cry. I had to have someone lift both her legs up holding the bar, making sure they didn't drop her legs. Then I had to somehow change her diaper. Sometimes I would have to sit and wait until someone came home to help me. I had very little sleep for six weeks. I don't really remember leaving her room for more than five minutes at a time. She woke up all night long, and I had to try and comfort her which was nearly impossible. When she would have to go for her checkup, the ambulance had to come to take her on the stretcher. The ride was so painful, and I just couldn't wait for it to be over. Finally, after what seemed like forever, which was really about two months, the casts came off. Then she had to work twice as hard to get back to where she was physically before the surgery. It was then that I understood what Karen had said to me. If I had to do it over again and knew what kind of pain she would be in, it would have been an even harder decision to make. In the end I am glad that we did it, because it has improved her standing and walking and so far her hip joints are still in place. This would not be our only hospital stay with Jasmine. She had to have a couple of 24 hour EEG's to make sure that she was not having any seizures. Even though they came back negative for seizures, she had misfiring of the brain, which can make her thoughts and motions confused, so eventually we had to put her back on anti seizure medication. The year went by for Jasmine with no major health issues, so all in all, it was a very successful year.

JASMINE DESTINY MULDOWNEY

                                                                                   Jasmine's birth mother gave her the name Jasmine Destiny. I decided to keep the name that was given to her, because quite frankly that was her name! I couldn't imagine calling her anything but Jasmine. On July 6th, 2007, almost two years to the day that we brought her home and on Jill's nineteenth birthday, Jasmine officially became Jasmine Destiny Muldowney! It was the most unbelievable feeling I have ever had. I had been waiting for the past three years and the day was finally here. She was legally our child, and no one could ever come and take her away from us. I left that courthouse feeling like I had just won the million dollar lottery. We didn't have alot of fanfare or a big party, Jasmine had just eased into our family and became an important part of all our lives. My older children who at first thought I was a little crazy for even entertaining the idea, were as happy as I was. I couldn't wait to go to her school and change her name, call her pediatrician, and anyone I could think of to share our good news. Now I could start planning for Jasmine's future as a Muldowney, and had to start making some hard medical choices. Jasmine's hip was almost all the way out of her hip joint, and would require surgery to correct it. Her best friend Shandrea had the same surgery a few months before, so of course I asked Karen what she would recommend. She gave me an answer I didn't understand until Jasmine actually had the surgery. She said she was glad she did it, but if she had to do it again, she didn't know what she would do. It was a very painful surgery, but the longer we waited, the harder it would be to do it, and the outcome might not be as favorable. So, we made the decision to have her surgery right after Christmas. It felt good to be able to make my own choices for Jasmine.

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.