 Both are beautiful! “Looking at Nicole that night when we got home, sitting in her room. Surrounded by her little princess dolls, with fairy lights on and Disney bedtime music softly playing in the background, I cried like I had never cried before. It was a sickening feeling to look at our little sweetheart and to know that she had no idea what she had and how her life was to be. It was absolutely heartbreaking.” ~Gail Rich~ Batten Mam and Advocate It can happen when I am reading something concerning a child that battles Batten disease, or it can come from a passing thought when I am driving. It might also happen when I am watching a YouTube video in preparation for writing a story. That is what took place today. I get moved by the details. Watching a younger sibling who has Batten disease as she helps her older sister to do something that she is now incapable of doing by herself. This while exhibiting the love that is there while she is doing so. These are the kinds of things that often move me in a big way. Writing is not something that I do full time. I actually work in the aviation field on components for helicopters that fight fires. I work in a shop in which I spend a lot of time with male co-workers and I do so for a lot of hours. I bring my laptop with me, using breaks and lunch to write or get organized to do so. Sometimes, I will have to stop typing as I put my thoughts into words. This is because I can feel myself getting worked up beyond the point where it is safe to continue. Am I somehow exhibiting a pathetic show of emotions as a male individual? Whatever your opinion might be, I can tell you that it is possible to be strong while at the same time, also being sensitive. You only have to allow yourself to become vulnerable. Kids that battle a rare disease like Batten are to me the most special. Others might agree but first, they have to be shown some things. A person first has to be made aware. Most people won’t even think about kids that battle a rare disease. Many might be reminded that such a thing exists only to shrug their shoulders and move on. After all, the plight of these kids doesn’t concern them. The result could be different for those who take the time and who show some interest. If a person pays attention and takes the time to be involved, they may be changed. They might end up giving a piece of their heart to these kids. As I have said in the past, if that happens, a person may come close to giving these kids all of it. I repeat myself frequently as I write these stories. I do so because I like to place emphasis on things that I have mentioned before. Things that apply to each family that battles alongside their little warriors. Each story is unique because each one shares the details of a different family’s journey. However, there are some things that all of the stories have in common. After all, these are children that we are talking about. The things experienced while battling alongside them can be those which the families share in common. Undying love and a bond that cannot be broken. These are just two examples of what a parent or caregiver of a Batten warrior will come to understand. Battling illness is something that should only be experienced by those who have aged. It is so difficult to watch when a child suffers through something like a rare disease.  One question that I have asked frequently is this - What is it about these kids? Is it the feelings that are produced in us as we consider the plight of these children? Is it just what we are feeling or is it that there is truly something special about them? When something like the loss of a child’s eyesight occurs and they bounce back from the disappointment. When we see them press on in life, finding the joy in living again and showing this through laughter and innocent smiles that can still light up a room. Should we not find that a cause to be amazed? When a child can no longer communicate verbally with us but we can see the love that is there. We can see the love that is being reciprocated as the child’s eyes light up in our presence. There is that smile again. The smile that gives many parents encouragement to move forward and fight for another day. So familiar to me now are the images of the children that battle CLN2 Batten. CLN2 is just one of 13 variants of Batten disease but it is one of the most common forms to affect young children. Oh, how I wish that all of the kids that battle Batten had access to Enzyme Replacement Therapy. Even so, I am thankful that this therapy is available to these beautiful children that battle CLN2. The images that I speak of are the ones that show these kids wrapped in bandages. This as a result of the treatment that they receive every two weeks. What a commitment on the part of the families as they travel to have this procedure performed. These kids are such troopers. For many of them, the side effects and complications associated with enzyme replacement take their toll. This, each time they undergo the therapy but again they always bounce back. The images of these sweet faces surrounded by bandages will always stay with me. Innocent children enduring more than most any adult will see in a lifetime. The things that they go through will not take away the joy that they have for life. Being in large part, unaware of the enormity of what they face, they simply press on. They do what kids do in every way, for as long as they are able. They battle so hard and they do so, so sweetly. It would be so easy to focus solely on the negative impact that something like Batten will have on a family. They do not call what is experienced by Batten families a “journey” for nothing. There are many struggles along the way and I try my best to detail these in the stories that I write. I do, however, try my best to make the love stories that are produced by these families my focus. There is sadness yes, but a love that is profound and undying. There is a bond that is formed that can never be broken (you wouldn’t want it to be). There I go, repeating myself again. With all of this in mind, I am headed towards telling the story of another family that personifies most everything that I have just talked about. Having sought to be a normal family, finding success as such, they have become much more than average when compared to your other families. Let’s not wait any longer to get started. Life Together  Talk about an attractive couple! Gail Baxter grew up in the city of Carlisle, which is a town that is close to Scotland and in the northern part of England. Growing up, she thought about what her life might be like as she grew into adulthood. Whatever the case may have been in her thinking, she would find success in whatever she endeavored to do. Gail would grow to be a take care of business kind of individual. She would move from Carlisle to the city of Newcastle in her early adulthood and she would begin a career in the banking and mortgage sector. Gail would work her way up to a managerial position by climbing the ladder. She started her ascent serving in positions such as financial advisor and customer service manager for the Northern Rock Building Society. One day, she would begin to manage people, overseeing a team of sixty individuals. Gail was a coach and a person who helped in developing the talent of others. That is something that she thrived in and also, something that she thoroughly enjoyed doing. She had found success in her work life but there was more to life than just working. There was more for Gail to yet experience. The sun was shining on a bright August day. It was actually a Bank holiday in the UK that day and the year was 2006. Gail was out with her sister Emily and they had found their way into a bar which was named Osbornes. This was a well known and well put together establishment in Jesmond (a suburb) within Newcastle. As the two ladies were enjoying their conversation, in would walk members of the Newcastle Vipers Ice Hockey team. One of the players, who by the way, was brand new to the team was a gentleman named Matthew Rich. Matthew had literally dropped his bags off in the hotel where the team had just arrived and had headed to the bar with his new teammates. Matthew was originally from Glasgow, Scotland and had grown up playing hockey. He had even moved to Canada when he was young to play at the high school level. Matthew had attended school and played hockey for Brock high school in Cannington, Ontario his first year and then headed to Notre Dame High in Wilcox, Saskatchewan to play his second year. Hockey was a huge part of Matthew’s life and Canada was, of course, a great place to further develop his skills. Matthew also sharpened his abilities by playing at the highest level within minor hockey in Canada. This as he played for the Central Ontario Wolves. He had even played for Scotland’s U21 Hockey squad (Under 21 age group) in preparation for a career in professional hockey. Matthew’s career had developed, just as he would want it to and here he was, a member of the Vipers and in Newcastle at Osborne's. This is where Matthew Rich and Gail Baxter would meet. Mathew had walked over to talk with the two sisters and he and Gail would gain an attraction towards one another. Neither of them knew at the time but they had each met their life partner. Before they left each other’s company, Matthew had put his number into Gail’s phone and a friendship would quickly develop.  Matthew Rich - The real deal! Texts and phone calls would be exchanged as each one continued on in life with their individual careers. The two of them would soon after begin to date as their relationship continued to develop. Gail was not too familiar with the world of hockey at the time that she and Matthew would meet but she would soon get a crash course in the sport. This, much to her amazement. Gail explains, “I had never seen an ice hockey game before and was soooo impressed!! It is such an amazing sport to watch. I couldn’t even stand up on the ice and to see Matthew flying around the ice with such speed, strength, and skill was just incredible – I loved it!” Gail would have the ability to watch Matthew play in Newcastle for a few months until he was signed by a team named the Manchester Phoenix. This would mean a move for Matthew to a town name Hale, which was about 13 kilometers from Manchester. With this, Matthew and Gail would embark on a long distance relationship. Gail would not let the distance between them get in the way. She began to travel the distance necessary for them to spend time together and to see Matthew play. This would take place most every Friday after she finished at work and the trip would take over two and a half hours one way. She would return to Newcastle in the early morning hours on Mondays, in time to go straight to work. That is commitment but it was well worth the effort as Gail and Matthew continued to grow in their relationship. It is amazing to think about how the two of them would meet and fall in love. They could have missed meeting each other by an hour's time and would have never met at Osbournes but their relationship was one that was meant to be. Matthew’s career would continue on as he had put in the hard work that it takes to play at a high level. All of the training, practice, and play in competition had really paid off. Hockey had become a way of life for Matthew and Gail was more than willing help by supporting his pursuit of excellence. Sadly though, things would take a drastic turn as the couple took a vacation together in Egypt. It was at that time that Matthew would come down with a severe case of food poisoning. The reaction that took place was one that was extreme and that would land Matthew in the infectious disease ward in Glasgow. This would happen as soon as he and Gail had returned home and he wouldn’t leave that facility for weeks. Matthew couldn’t walk and was bound to a wheelchair upon leaving. He would be diagnosed with Reactive Arthritis and it would take around six months to recover from his illness. Just to walk again, handling his own weight was a struggle but Matthew would overcome and get his health back. Gail would tell me that Matthew’s hockey club was very supportive during the ordeal and they would reinstate him after he returned to full health. Matthew would train and then return to playing hockey when he was able to compete. Being a professional athlete and staying at a competitive level is not easy. Recurring injuries can often take their toll on a player and that is what would take place in Matthew’s case. An issue would arise with his shoulder dislocating. This would take place a few times and it would interfere with his ability to compete. His shoulder was never the same and this would cause him to have to walk away from the sport that he loved. Hockey was such a huge part of Matthew’s life and leaving was a “massive blow” to his existence. Even so, he accepted what was the reality of the situation. Matthew started to look for work while he and Gail set up home together. Hockey would no longer be the center of the young couples existence but they had each other and they were in love. They now had a life together, although they could not know what that life would entail for them. All throughout this time period, Gail had continued to work in the banking sector and Matthew would find employment working in industry. Life was about work and time spent between the two of them as their new life together continued to take shape. Gail had found success in her work life and had been rewarded by gaining positions of increased responsibility. She had put a lot of time and energy into her work but there was more that she wanted out of life. Before I continue, I should stop to explain that this writer learns something new every day. I am, in fact, learning new things with each story that I write so let me explain. We all know that having children of our own as we grow is a God given desire for most of us. I know there are exceptions. Now being from the United States, I know that most women want to enjoy the experience of being a mom when they grow up. I knew that in certain parts of the world, like down under in Australia and in the United Kingdom, that moms are referred to as mums. However, I did not know that in other places, like Ireland, Wales, and parts of Northern England that mothers are referred to as mams. More to Life  Proud parents. Louis makes his entrance. I think that my readers know where I am going from here. Gail had found success in her work life but there was more that she wanted for herself. She had the desire to be a mam to children of her own and this desire only increased as she met the man that she desired to spend her life with. As a couple, Matthew and Gail wanted children together and that would soon become a reality. Both Matthew and Gail were so pleased when they received the news that Gail was expecting their first child. Just as they would hope for, Gail’s pregnancy would progress without major incident as the time would approach. It was also at that time that things were beginning to change with her work. Gail had been with her company for ten years when as a business her employer began to struggle, and changes began to take place. A reduction in force was coming and this left Gail with some options. What is often called a lay-off here in American is referred to as a redundancy in the UK and Gail would be offered the option of taking part in that. She would take this option instead of going on maternity leave because the timing was perfect for her to begin the next chapter. That of being a mam and raising a family! Gail’s co-workers recommended that she leave work a couple of weeks before she was due to deliver her baby and she agreed that would be a good idea. Gail had planned on having some down time before the day arrived but her baby boy had other plans. That's right! Their baby, who Matthew and Gail would name Louis, was a boy. He decided that it was time to make his entrance into his parent’s lives a couple of days after Gail left work. Louis arrived on September the 2nd, of 2010. He had all of his fingers and toes and he was the most beautiful thing that his parents had even seen. Babies are by nature beautiful, are they not? Gail explained what she was feeling as she held baby Louis for the first time. I have also included some of what she was feeling after Louis was brought home. Here is what she would say, “... for the first time in my life, I felt I had found my place. I was meant to be a Mam! I remember a few days after bringing him home, we had family around and he was in his crib in the living room. We all sat around looking at him and I burst into tears and said ‘I just don’t want anything to ever happen to him, I want to keep him safe forever.’ It was the most real feeling of protection and I will never forgot that.” Louis was the picture of perfection and purity and he belonged to Matthew and Gail. Was Louis a little hockey player in the making? Well, whatever the case might be, he was adored by his family and still is to this day. His parents loved watching Louis grow and develop into a little man. Watching his childlike ways filled them inside like nothing else could. In all honesty, Louis was not the first baby of the house. That would be Matthew and Gail’s pet Beagle which they name Archie. The couple had researched and found that Beagles were good with children. Archie came to them about three weeks before the couple found out that Gail was pregnant. They, no doubt, loved watching Louis and Archie interact with each other!  Baby Nicole and happy mam of two! Being parents to Louis was an amazing experience for Matthew and Gail. This, just as you would expect it to be. Some people are content with one child and some are intent on keeping things that way. That was not the case with this young couple. They wanted to experience the joy of bringing another little bundle into the world. They again wanted to experience the wonder of seeing those little hands and feet wiggle for the very first time. Gail would receive the news that she was expecting in the summer of 2011 and both she and Matthew were excited about it. They were going to become parents for the 2nd time. Things would go generally well for the first six months as Gail carried baby number two however, a concern would soon arise. It seems that Louis’ brother or sister to be was not growing as a baby would be expected to. For this reason, Gail was in and out of additional appointments because of the concern this created. It would be decided that it was best to deliver the baby by inducing labor three weeks early. Thirty-seven weeks of pregnancy was the goal that was hoped to be reached and that would be accomplished. It was time to bring the new bundle into the world and this would take place at the Royal Victoria Infirmary in Newcastle. It would be on March the 1st of 2012 that Gail would give birth to a tiny, yet beautiful, baby girl. The name given to this precious little person was Nicole Thomasena Rich. Her given middle name was that of Matthew’s Nana. She weighed a slight four pounds and eight ounces but even so, baby Nicole was flawlessly beautiful. She had all of her fingers and toes and she was covered in brand new baby skin! The infatuation between tiny Nicole and her mam was so strong and it took place the instant she was handed to Gail. There is a special bond between a mother and her newborn child. It begins to develop even before the baby is delivered. The quality of relationship between a mother and her newborn daughter is perhaps greater than can be explained. Here is what Gail had to say about the experience, “That was it, I was instantly and completed besotted!! There is nothing more precious in this world than having your baby placed on your chest for the first time and you feel their tiny heartbeat and know they are yours. You have made this little person. Instant protection, overwhelming love. We could not have been happier.” Nicole would have to stay in the Special Care unit for a couple of nights due to her small size. The medical staff wanted to make sure that she was feeding well. Everything proved to be okay with their precious little newborn and the Rich family was now a family of four. The midwife that had delivered Nicole came to see everyone the very next day. She was so relieved that Nicole was doing well with as small as she was at birth. She was small but very strong and amazing to everyone who set their gaze on her. Gail describes what people were seeing in Nicole as they looked at their newborn daughter, “When we had visitors, they would look at Nicole and say ‘she’s been here before!’ She never had that glazed baby gaze they sometimes have, she was always looking around intently. She fed well, she was such a healthy baby and for as little as she was, she was strong as an Ox! Little did we know this would serve her well in this little life.” Bringing Nicole home for the first time was, no doubt, a special event. According to Gail, Matthew had described Nicole's homecoming as an “explosion of pink” and I have no doubt that this was absolutely true. Why not celebrate the fact that there was a new little princess in the house? Princess’ and pink just go together. The Mammy of the house had her baby girl and everyone was happy to know this. Gail was now well established as a stay at home mam and this was a role that brought her a lot of fulfillment. Now, the enjoyment that she received as a mam would be multiplied by two. It had to seem so perfect, at that time. She had this beautiful little girl to compliment the son that was so adored by her and Matthew. Just as it had been with Louis, they now had the opportunity to watch little Nicole grow and thrive in the household environment. She would bring so much joy to her family as the days and months passed by. There would be nothing out of the ordinary that would stand out to Gail as she watched Nicole grow. By that I mean in the way that she reached her developmental milestones. It is normal for children to advance in different areas of their development at their own pace. Louis had been quick to reach his milestones and he was a very talkative young fellow but Nicole was coming right along with things as she continued to grow. She crawled and then walked not that long after, advancing to the point of being given the title of “daredevil”. Nicole loved the outdoors and all of the things that went with it. Running, climbing, and going down slides. She was adorable and so fun to watch. Not Yet Complete  Precious pic - Don't you think! The timing of the reduction in force at the banking institute that Gail had worked for had been perfect! There was no maternity leave to return from, so there was no decision to be made as far as what to do. Gail had been afforded the opportunity to stay at home full time and this was very much welcomed. Especially because there were no grandparents nearby to help with the children. Gail was available to take children to every baby group and play group that there was. She was able to get to know the other mammies from these groups and play areas and this helped her to develop friendships with many of them. This was not to mention the fact that she was able to give her children her own undivided attention while they were young. Matthew and Gail had talked about her going back to work at some point but Gail knew she didn’t want to return to banking. She had a deep desire to work for herself one day and in fact, she had something in mind. I will let Gail explain in her own words, “My dream was to have a coffee shop/tea room and bakery (as I love baking!) and it was going to be called Barndoor Bakery. I have always loved baking and have always made our children’s birthday cakes, made family christening cakes etc. So I thought I might go into cake making – I made our wedding cake and then made two of my friends' wedding cakes too! No pressure there!” Matthew and Gail knew that Gail would have to return to work someday but the children were young and they wanted to afford them the opportunity to have their mammy around for as long as they could have Gail home. There was something else that would shape their future as a family and that was the feeling that they were not yet complete in the size of family that they wanted. To some, having a girl and a boy seemed so perfect. Why not just call things good and move towards the next stages of family life? Gail explains her feelings in this way, “When we had Louis and then Nicole, a lot of people assumed that was us, one of each, but we didn’t feel like that at all. We were blessed beyond anything we could imagine but I still had a sense deep inside, that I wanted another child. As much as I adored and loved Louis and Nicole more than anything in the world, I just had this feeling that I was not complete.” It was just a fact that for this couple, there was more yet to be experienced. Both Matthew and Gail were people that had shown that they could achieve the things that they had set out to do. They had plans for a life together and the future was still largely in front of them. Things looked bright for them even if their circumstances had changed. Both being intelligent people, they could work together and focus on what their future would look like. Even with this, they were not quite ready to stop increasing the size of their family. Gail explains, “I adore having children, to care and protect them, to feel their love, to have their tiny arms wrapped around your neck. There is nothing more precious or that brings you more joy than the love of your family.” There was more yet to come and much more that would be experienced. |