GOOD THINGS COME TO THOSE WHO WAIT!

After alot of phone calls and waiting and more phone calls Jasmine finally got her tricycle the Monday after Hurricane Irene. I have been telling her about her yellow bike for some time now, and am sure she probably thought I was making the whole thing up. As soon as we put her on the bike, she was grinning from ear to ear. She is able to pedal fast and hard, even going backwards to get her momentum going. She has not gotten the hang of steering, (or even holding onto the handles for that matter), but I have full control of her steering from a convenient handle on the back. It even comes with a hand brake for me! The other day, Jasmine did a Triatholon. First she went swimming, then went running outside in her KidWalk, and THEN rode her bicycle!!! I think I was more tired than she was when all was said and done. I am so proud of Jasmine and all that she continues to do. She started third grade this week and was happy to see her old bus driver Patti, and her first bus aide she ever had, Maria. We are all so lucky that every bus driver and aide she has had are such very special people and really love all these kids. The sky is the limit for Jasmine now. I am waiting on a toileting system for her next, so this time next year she should be out of diapers. Nothing is impossible with perserverance and patience. (and alot of work on Jasmine's part)

Jasmine Turns 8!!!

Jasmine turned eight years old on June 8th. She has continued to surprise us in many ways. Since her feeding tube was removed in February, she has gone from pureed baby food to pureed everything!! She has enjoyed pureed chicken lo mien with garlic, mac and cheese, fish sticks, mashed potatoes and more! She actually had pureed pizza too. Jasmine even received an award at her awards ceremony for trying new foods! She enjoys walking in her walker outside, and is patiently waiting for her tricycle that is being generously furnished to her by the New Jersey adoption subsidy program.
There was a surprise retirement party for Jasmine's preschool teacher Miss Helen this past week. She was a big part of Jasmine's early years as far as her socialization and learning skills. When I spoke to Miss Helen, she said that she doesn't think that her kids will remember her. I know that myself and all the parents will never forget her, and even if Jasmine doesn't remember her in her brain, she will forever remember her in her heart!  Jasmine will be going to school this summer on an extended summer program, and will be enjoying swimming at home and her first family reunion in Maryland in July. She continues to amaze me and I love her more and more every day. I now know that God does not put a limit on how much you can love someone.

THE PAST AND FUTURE

 When I was a little girl I always brought home injured birds, motherless squirrels, and numerous lost animals. I even caught a german speaking parakeet one summer in our backyard. My parents always let me make a little home for them out of rags or grass, and care for them, even though they knew that most of them wouldn't make it through the night. I owe alot of who I am today to my parents because they allowed me to be what I was meant to be, and that is a nurturer. People always tell me that what I am doing is such an unselfish thing but I beg to differ. Jasmine has changed me and so many people around me. I understand more of what a special needs person is, and how they are really not much different from you or me. Jasmine is a normal seven and a half year old little girl, who loves to be outside and loves to swim. She likes to ride a bike, a horse, ice skate, and sleigh ride. Jasmine loves to go for walks, and of course to go to the mall. Justin Beiber is her favorite singer, and she loves to dance and sing. She can shake her head NO when she doesn't want to do something, and she can let you know when she is saying YES! Jasmine has a Mom Mom and Pop Pop who adore her, and a Grandma that feels the same. She has thirty one cousins who all treat her like she is no different from them. She has LOTS of aunts and uncles, her nurse Miss Lee who she LOVES, and teachers and staff at school who take good care of her when she is there. Her smile could even make Mona Lisa crack a smile, and is as silly and crazy as her mother. I know she will continue to surprise and amaze us everyday with new words and more mobility. I am planning on updating her progress maybe monthly, or if something really fantastic happens, I will write sooner. I know that one day I will be blogging that Jasmine ate her first piece of pizza, and took a step all by herself. The sky is the limit with her, and if anyone can do it, she can. In Jasmine's first IEP meeting (individual education plan) her goals were simple tasks like gazing at an object for thirty seconds. Now some of her goals are to identify shapes, body parts, and to identify colors.This doesn't seem like anything spectacular, but believe me this is a major milestone. We all take for granted so many things that come natural to most of us, but for Jasmine it is a celebration every time she masters something new.  I had the privilege of raising four of my own very unique children, with lots of bumps along the way, and I am sure that it will be no different with Jasmine.  She definitely has a mind of her own and can be just as stubborn as any seven year old. I am looking forward to the future and what it holds for Jasmine and all of us.

I LOVE MY TUBELESS TUMMY!

The next six weeks were a real test for me and Jasmine. She came down with a cold and fever so I had to try and give her medicine by mouth, plus her food and drink. She was not at all interested in any of it, so it was a struggle to get her to take her medicine. All her liquids are thickened so it's easier to swallow, so I thickened her medicine mixed with some juice and spoon fed it to her. It took a while but she ate it. Jack told me I should just give her the medicine in her feeding tube, (he felt bad for her because she was sick), but I said if I did that then it meant that she still needed it.  Jasmine got through her cold with flying colors. She didn't eat much for four or five days but when she felt better she began eating and drinking more. That made me feel so much better knowing that I didn't use her feeding tube during her illness. I then had a meeting with her nutritionist through her school, along with her speech therapist and teacher. We had kept a list of what she ate for four days and she looked at that to get an idea of how much she was eating. She was pleasantly surprised , and assured me that she was getting enough nutrition and really didn't need her feeding tube. I left her school feeling so optimistic about Jasmine's future. I decided not to wait for March to go back to her gastroenterologist, and called him as soon as I got home. We made the date the Friday before Valentine's day, right after her dentist appointment. Jasmine was really growing up. She halfway allowed the dentist into her mouth to clean and examine them without carrying on like she usually does, and didn't cry on the elevator ride up to the doctors office. (She has always been very afraid on an elevator.) I even switched pediatricians once because they were on the second floor and I couldn't carry her up the steps. Her tube removal was very uneventful. He walked in, said "Oh, now you're ready?", pulled it out and covered it with some gauze and a band aid. He warned me that there was an outside chance that it wouldn't close, but we would know pretty quickly if it was going to close or not. He said if it didn't close her food would come right out of the hole in her stomach. I was not looking forward to that happening. Luckily, we didn't have to worry about that because it started closing very quickly. Three days later Jasmine went to school on Valentine's Day with a heart sign Jill made for her which hung on the back of her chair that said I love my tubeless tummy!  Her stomach is healing very nicely, but she will have yet another scar to show all that she has been through. It is so nice to be able to pick her up without worrying about pulling her g-tube out, (I only did it once) and I can't wait to go buy her a two piece bathing suit!

SEVEN YEARS OLD

Jasmine turned seven on June 8th, 2010. She had really come a long way from the first time that we had met her. Every day she was doing something that she hadn't done the day before. With Jasmine, it was always slow but steady progress. The doctors told me from the beginning that she would be a pleasant child, but would not be able to accomplish much. I am so glad that she proved them wrong. I am amazed at her determination to do things, and her love for life and all the people around her. By the time Jasmine started second grade, her room was finished and she was officially a little princess. Her room was painted a lilac color with white and lilac flowered curtains to match. She had her state of the art bed which could do everything but move across the room by itself, a therapy swing with a therapy mat, a bumpy bed to lounge on that I made out of big chunks of foam, a huge flat screen television on her wall, and enough room to play soccer in her kid walk! Every week she was surprising us by eating more and more and drinking all of her drink. I was determined to have her feeding tube removed, but there were just times when she wasn't interested in eating or drinking. It was becoming more and more frustrating, because I thought that maybe she would always need it, and maybe wasn't capable of eating on her own. We took a visit to her gastroenterologist and I told him my concerns. He suggested just feeding her for the next four or five weeks by mouth and seeing how she did. If she lost a significant amount of weight, then we would know that she wasn't ready. It was a very scary concept, to not use her feeding tube when that was the way I had been making sure she got what she needed, but I was willing to give it a try. The next few weeks went by pretty well. There were times in the morning that Jasmine wasn't very interested in breakfast, so I just gave her what she would take. She almost always did well in school, so I never worried about that. The hardest part was trying to get her to get enough liquids in her for the day so she would stay hydrated.  I counted every calorie and made myself a nervous wreck, trying to make sure she met her quota every day. We didn't use the feeding tube from a couple of days before Thanksgiving until her next visit in January. They weighed her and she had actually gained a half a pound! The doctor surprised me by telling me we could take her tube out right then! I surprised him right back and told him I thought it was too soon. I wanted to make sure that when she was sick, she was still able to get her medicine and liquids without the help of her feeding tube. So, we left with her tube still in tact, and made an appointment for the middle of March to see if she was still maintaining her weight. After all Jasmine had been through, I wanted to be sure that this was the right thing to do. I realized that I really had learned to have patience!

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.

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.

The First Year

The first year Jasmine was home was very busy.I had set aside some money so I took a Family Leave from work so I could take care of Jasmine.  I took advantage of a program called Early Intervention, which offers therapies for children with developmental disabilities and delays from newborn to three years old. She was evaluated and it was determined that she would have physical therapy in our home two days a week and a special education teacher once a week. We also signed her up with The Commission for the Blind because she has a condition called cortical blindness or cortical visual impairment. Her condition was caused by lack of oxygen to the brain, which resulted in an injury to her visual cortex, which is a section of the cerebral cortex responsible for vision.In other words, her brain couldn't interpret what her eyes were seeing.They describe it as trying to look through a piece of swiss cheese. She had and still has a hard time focusing on an object for a long period of time. She had very poor depth perception, which made it impossible to reach for an object. Jasmine's visual therapist turned out to be the daughter of one of my coworkers and was an amazing vision therapist. She would show Jasmine shiny objects, lights, balls, toys, and she slowly started tracking them with her eyes. This is a very slow process, but is an amazing thing to see the progress that is being made. Jasmine's physical therapist came twice a week and worked on stretching and holding her head up. The teacher was the one who really surprised me. She would play a game with Jasmine on the floor. Jasmine would be on her back, kicking her feet. The teacher would grab her legs and say stop. Then she would ask Jasmine if she wanted more. If Jasmine smiled or made any kind of sound, she would do it again. I have to say that I thought it was ridiculous. She wasn't saying more, it didn't even look like she understood what she was doing. Every week she came, she would do it again, playing different games. Well, I can only say that I guess that's why she had a degree and I didn't. Jasmine went from smiling to making a noise to making an M sound and now says MORE! None of this happens overnight, it happens over years, but nevertheless it does happen!That first year our house had a revolving door. There was always a therapist, teacher, or social worker there on any given day. On our off time we spent alot of time in the pool, and going for long walks in the neighborhood, the boardwalk, and taking a trip to Mom Mom and Pop Pop's house.

BEST FRIENDS FOREVER!

I need to back pedal for a minute because the story of Jasmine and Shandrea are a big part of the whole picture. When Jill was rehabilitating at Children's Specialized Hospital there was a CNA there that took a special interest in her. Her name is Karen and the night of Jill's accident her son had been at the corner right after it happened. He came home and told her all about it and then a couple of weeks later she was taking care of one of the girls who had been hurt. Karen is one of the funniest, nicest, compassionate people that I have ever met. She has a way of making every person she comes in contact with feel very special. Karen took extra special care of Jill. She went to great lengths to make sure that when Jill took a bath that it was as painless as possible, and that was not an easy task. We would talk often and even after Jill was released we saw alot of her when we volunteered. A couple of months after Jasmine was at Children's, they moved her into a bigger room with a few more children. This was better for her because there was more activity to keep her stimulated. There was one little girl named Shandrea who shared the room with her. Shandrea was only six weeks older than Jasmine, and like Jasmine had a life altering event.She was a shaken baby.When Shandrea was around ten months old, she was shaken to the point of severe brain damage and blindness. Her skin was as black as night and as shiny as all the stars in the sky. I have never seen such beautiful skin in my life. Shandrea had a laugh that if it could be captured in a bottle it would make millions. Jill and I spent alot of time with Jasmine and Shandrea, but so did someone else. Karen took to her like we took to Jasmine, and before long thoughts of fostering her were becoming a real possibility. She already had a son who was heading towards his teenage years, and a seven year old autistic son. She struggled with the idea, but like me really felt like this was meant to be. Shandrea went home with Karen only a week before Jasmine came home with us. So it was to be that Shandrea and Jasmine would become best friends forever. We live right down the street from each other. They take the same bus to school everyday and have been going since preschool and are in the same class. They have occasional play dates where they swim together while their mom's catch up on their progress. We even took a trip to DisneyWorld together! So it is only natural that Karen was the first person I called when we brought Jasmine home. I was in a panic. Spread out on my dining room table was a mixture of medications, lists of when and how much to take, feeding tubes, and a list of how much to feed Jasmine every four hours around the clock. Since I had never even fed her before by myself, I was petrified. Karen came to my rescue, bringing a nurse from Children's with her. The nurse sat down, figured out all the meds, wrote out a schedule which I could actually follow, organized everything for me, and showed me how to feed her. I felt so much better, but it was still so much harder than I had ever imagined it was going to be. The next few months I was extremely exhausted, waking up in the middle of the night for her feeds, and waiting while it slowly dripped through her tube.( Her crib was right in our room, so at least I didn't have far to go to check on her.)

Coming Home!!!

Soon after Jasmine's second birthday, we got the news that we would be able to bring Jasmine home in a few weeks. I was starting to get really nervous because I didn't even know how to feed her with the feeding tube. The hospital made arrangements for me to go during one of her feedings and they would "train" me. I went on the day they said someone would be there to show me. The nurse came in, hooked up the bag with her formula in it, flushed out the tube, hooked her up, started the drip, and left. THAT was my training. A couple of weeks later when Jasmine's social worker called to tell me we could bring her home, I told her that I still didn't know how to feed her. She said the hospital said they showed me how. They never even let me do it myself, so I went back and watched again a few more times. We set the date to bring Jasmine home for July 7th, one day after Jill's 17th birthday.                                                            

I have to stop this story for a minute to comment on all the questions I had from many family and friends. Why are you doing this? Don't you realize how much work this is going to be? She is only going to get heavier, how are you going to lift her? What will you do when you get older? Don't you realize she is never going to get better? I was bombarded with questions. Would they be asking me these same questions if I had given birth to her? Maybe, but I don't think so. There was no question in my mind, because in my heart she was my child. I knew that this was God's plan for me and for Jasmine, and I never questioned it. God gave me His message loud and clear, and I wanted this more than anything. On July 7th, Jack, Jill and I drove to Wanaque to pick up Jasmine. There was such a commotion in her room when we got there. Verna had asked me to bring a suitcase for Jasmine, because she didn't want her going home with her belongings in a trash bag.(that's how they send most of the children to foster homes) Verna packed all her clothes, and even stuffed diapers in where she could so I would have a supply when I got home. When everything was packed, we walked to the nurses station to sign Jasmine out. It was there that they handed me a big brown bag full of all her medications and a very long list of when and how much to take. It was extremely overwhelming. I looked at it and I might as well have been reading Chinese, because I didn't understand any of it. It was written for a nurse, not for me! They tried to explain it to me, but I figured when I got home without all of the excitement, I would make sense of it. After everyone said their goodbyes to Jasmine, Verna walked us out to our car. I think that was the hardest part for me, because I knew how much she loved Jasmine too. She had been a good "mother" to her, and I would be forever grateful to her. (we still speak from time to time and I send her pictures of Jasmine.) When we pulled away from the hospital, I felt like someone who had just been released from prison. There would be no more two hour trips to see Jasmine. I could be there for her every minute of every day. It was the best feeling ever. The first thing we did on our ride home, was to pull all those big balls that were in her braids. They looked cute, but I don't know how she was expected to sleep in them because it actually lifted the back of her head off the bed they were so big! When we pulled into the driveway two hours later, I could finally breathe again.

Jasmine's 2nd Birthday!

The months went by slowly. Jasmine celebrated Halloween, Christmas, Valentine's Day,and Easter at Wanaque. We would visit as often as we could, and still went back to Children's to volunteer on occasion. Every time we would go see Jasmine, I had a hard time leaving her. She spent alot of time by herself, and that killed me. Verna spent as much time as she could with her, and would even braid her hair. I would rock Jasmine to sleep before we would leave, and then gently lower her into her crib. I figured at least she wouldn't realize
                  we were leaving, and that she was
dreaming sweet dreams. I have to mention that during all of these trips to see Jasmine, Jill was still in alot of pain from her accident. She had a hard time sitting or standing for any length of time, so the trip for her was very hard. So were the visits. I could see she was hurting, but I think Jasmine distracted her so she was kind of like her "pain medication". Jill was still going for therapy, and had a couple of operations to manipulate her knee to get more range, and had some hardware from her knee removed. There is nothing harder than seeing your child in pain, especially when there is nothing you can do to help. Through her whole ordeal, Jill has said that if she had to do it all over again for Jasmine, she would. I don't know many people that would say that. She is my hero.
Jasmine's 2nd birthday was approaching, and Verna was planning a party of all parties. She made a ton of Jamaican food, bought decorations, had a Little Mermaid cake, and invited all the nurses and aides to come. Well, what a party it was. There was music and laughter and ALOT of people, the exact opposite of her first birthday. Jasmine got lots of presents, and when the party was over, Verna told me to take them home with me. This was the first time that it seemed like I might really be taking Jasmine home. Jill and I collected all the presents and took them home. We admired all the beautiful gifts that had been given to her, and put them in a corner, waiting hopefully for the day that they would truly belong to her.

Wanaque

Jasmine was sent to Wanaque in the middle of October. I was sick to my stomach because she would be in the hands of people that I didn't know, and I wouldn't have the access that I had to her in Children's . The ride was an hour down the parkway, and then another hour down Rt. 287. It wasn't a bad ride, just a very long ride. The first time we went I was very upset. She went from being in around a 32 bed facility, to I think a 92 bed facility. It was very overwhelming to see so many sick children, peering out through their beds, or just laying there on ventilators. We signed in, found Jasmine's room, and took a look around. She had a roommate who appeared to be around 6 or 7 years old, she couldn't talk, but she sure could smile! She was as sweet as could be, but was all alone with only a TV to comfort her. We met one of the nurses,(who I must say were all very nice) and helped us to get Jasmine in her chair so we could take her for a walk around the ward. When we walked in the main room where they fed them, I was extremely unprepared. There were children everywhere, lined up in front of a TV, some totally out of it, some sleeping, and some just staring at the television. Don't get me wrong, they were totally cared for in the sense that a hospital can care for someone, but it is just so sad to see children with no one to give them that one on one attention that every child needs. Many of the kids were tube fed, (including Jasmine) so there were IV poles everywhere accompanying the patient. This was ours and Jasmine's lives for the next eight and a half months. If I knew how long she would have been there, I don't think that I would have been able to handle it. I would work all day, then take the trip one night a week for two hours, visit for two, and then drive home another two. When the weekend came, we would do it again, spending as much time with her as we could. Sometimes when we could come to see her, the window in her room would be open, her feeding tube unattached in her bed, and she would be soaking wet from the feeding that just spilled all over her bed. There were so many patients that a nurse wasn't able to keep checking her like a mother would check her child. Fortunately, there was a nurses aide who fell in love with Jasmine the minute she saw her. Her name was Verna and she had a thick Jamaican accent. She took to her like I did, and became her hospital mother. Verna would take Jasmine's clothes home to wash, because she didn't want them in the washing machines with all the other soiled clothing. When she would go back to Jamaica for a visit, she would line other people up to look in on Jasmine and to do her laundry for her. I was able to take her clothes home many times too, and it gave me such a feeling of closeness to Jasmine, folding her little clothes and imagining dressing her in them. I had been in touch with Jasmine's social worker, and told her what my intentions were and if she thought that I would be able to foster her. She was going to have to check with her family to see if anyone else was willing to take her first, but she would let me know. Meanwhile, not one of her family members came to see her at all. Her mother came one time with the social worker, only because she was encouraged to do so by the worker. I felt like I was not destined to have Jasmine, because during my Christmas party at work a few days before Christmas, her worker called me and told me that it looked like the Grandma was going to take Jasmine. I was heartbroken but thought that maybe it would be best for Jasmine to be with her family. I told Jill and she was very upset too. We decided that what was to be was what was supposed to happen, and that we should just be there for Jasmine while she was in the hospital. A couple of months later I was informed by the social worker that the grandmother never called her again and that it looked like Jasmine was available to foster. Jack and I went for our classes, and then were told that we needed the classes for medically fragile children as well. We took them too, but I must say it really doesn't cover what you really need to know to care for a special needs child. Once we completed all our classes I thought we were done. Not so. We then had to go through a series of interviews for all family members that would be living with Jasmine, fingerprinting and background checks, and then a home inspection. When the state inspector came to our house, I had to have childproof latches on all my cupboards, (even though Jasmine couldn't even scratch her own nose if she wanted to)and all medicines in a locked cabinet. She even asked to look in my closets much to my dismay, because that's why my house looked so clean! I asked her why she needed to look in my closets and she answered very matter of factly that she had to make sure I wasn't hiding any children in there. Really? While we waited patiently for all of the paperwork to go through, we faithfully visited Jasmine every week.