“I am just an ordinary nana that had a very special bond and relationship with Marshall from the day I watched him being born.”
I agree with this statement in part, however, I would take exception to one small part of it. I'll explain as we go along.
As I continue to write, I find myself becoming immersed in the stories that are created through the trials and circumstances of others. I am by nature an emotional and passionate kind of person. I actually work in the aviation field as a mechanic. I work in the overhaul shop at a Heavy-lift helicopter company. A lot of the material that I put into print comes to me as I am performing some of the more mundane portions of my job. Sometimes, I will be working and thinking over the details of people's stories and I will find myself becoming weepy eyed over the details of their struggles. I quickly collect myself and press on.
Are these stories about rare children and their families all sounding the same to you? Well they shouldn't. Often times the outcome is the same. That is true. Some families are in the middle of the fight. Others have been through a battle in which they have lost the most precious of possessions once held in their arms. Each story is unique because each family has their own story to tell, as well as, their own set of circumstances. These stories are filled with hardship and difficulties. However, they also tell us about a demonstration of undying, sacrificial love. They often times show us the nature of the indomitable human spirit. These stories are to me a mixture of heartache and treasured memories, vulnerability and great strength.
You, the families of rare children, by your example are writing these stories. I am just putting them into print.
As I write this article my number three son has his 27th birthday quickly approaching. My special needs son is a special guy. He brings so much laughter into this house. He also brings challenges along with the joy that we experience by having him. He depends on us to help him in the ways that he is not able to help himself. As a result of that, there is a special bond that has developed between him and my wife and I. What if a child is totally dependent on you for survival? What is the bond like? Is there anything that you wouldn't do for that child? What would you not give up in order to fulfill obligations of that bond?
This next story takes place in the city of Plymouth in the United Kingdom. According to Wikipedia, Plymouth is the place that the Pilgrim Fathers departed from in the year 1620 in their Ocean Journey to the “New World”. Throughout the Industrial Revolution Plymouth grew as a commercial shipping port. It would become an important naval port during World War II. That would make it a target for attacks that led to it's partial destruction. The city center would be completely rebuilt and that would bring Plymouth to be what appears to be a most beautiful coastal city. It was estimated in mid 2015 that Plymouth was home to about 262,700 people.
Plymouth is not only a beautiful place. It is also the place of a most beautiful story.
Marshall Dylan Michael Clark was born November the 8th, in the year 2008 at Derriford hospital in Plymouth. His mother Lara had so looked forward to Marshall's appearance into this world, just as any expectant mother would have. Lara would give birth to Marshall without her newborn baby's father being by her side. You see, Marshall's dad was a warrior. He had been called away to serve his country in the War on Terror. That was in the prior month of September.
Lara, however, would not give birth to her son while being alone. Lara moved in with her mum and dad when she was six months pregnant and her mum was by Lara's side when her son was delivered. Elsie Clark was no ordinary mother. She was by vocation a highly qualified nurse and that would prove to be instrumental in the life of baby Marshall. Elsie was the first person to hold Marshall in her arms after his birth and the bond was instantaneous and real. Lara stated that the both of them fell in love with Marshall from the minute that they first laid eyes on him. Who could argue that would be the case after looking at his picture.
I am certain that as little Marshall began to grow he filled the house with much Joy and happiness. As a matter of fact Lara stated to me that, just as you would expect, Marshall was a happy little guy. We all as parents, carry with us fond memories of these times in our child's development. Everything that we observe at this early age is just so precious. All their little actions put a smile on all but the most cynical of person's faces. At two years of age, the family noticed that Marshall was struggling in the area of his speech, as well as, other areas of his development. Three months after his third birthday he had his first seizure. Seizures! Every story that I have followed about a child with Late Infantile Batten Disease includes seizures at an early age. This is usually what prompts a parent to seek medical attention and to start their search for answers.
When it comes to stories about children with Late Infantile Batten Disease, you won't see a lot of details about a child's early years. That is because as the saying goes, “First it takes the childhood, then it takes the child.”
Lara, her mum Elsie, and the entire family must have been heart broken as they received Marshall's diagnoses of Late Infantile Batten Disease, CLN2.
Elsie would bring Marshall to most of his doctor appointments as Lara was working a lot of hours. That suited everybody well because of the bond that Elsie shared with Marshall. You see, as I have been told by both Lara and Elsie, Elsie loved Marshall not as a grandmother. Elsie loved Marshall as a mother would. Lara stated it like this: “Marshall and mum had a bond that is beyond anything I ever saw.” If you look at the pictures of Elsie and Marshall together it is a beautiful thing to see and it is quite evident that the bond was of a special quality. This is the type of thing that, as I mentioned earlier, stirs up my emotions.
As the saying goes, you learn something new every day! I didn't know what the term Palliative Care meant until doing this article. You see, this was Elsie's area of expertise. She would state it to me in this way: “I was fortunate that the only skill I have is that of being very experienced in medical matters particularly in palliative care and the control of symptoms such as those that Marshall was presented with.” And that actually defines the term. This type of care is focused on providing relief of the symptoms and the stress of a serious disease like Batten Disease. It is my opinion, but as Elsie held Marshall in her arms at the time of his birth there was already a plan in place for the care and attention that Marshall would need. That plan would be carried out through Elsie.
It was very fortunate for Marshall because Elsie had to fight for the appropriate care on many occasions. She stated that It was so wearing but fruitful because Marshall's seizures and abnormal movements were well controlled as a result . Wearing? Yes. But worth it for sure. Elsie would tell me “That was the least I could do for the child that was my world.”
She said that “Plymouth has no community palliative care, no local hospice care and the palliative pediatric community team only worked Monday to Friday 9 to 5. They were also very inexperienced in palliative care and symptom control so the responsibility of making sure Marshall received the correct, best and appropriate treatment fell to me.”
It was an extremely tiring, lonely time for Elsie. She stated to me that the only thing that kept her going was the strength of love that she had for Marshall. I see this as a common theme when it comes to caring for these children. Like I have said already it is a combination of heartbreak and steadfast, undying love for these kids. It moves people past their own fatigue and it gives family members the strength to move ahead each day.
“My knowledge prevented Marshall from so much unnecessary suffering but it is a frightening thought of what would have happened had I not had that knowledge.”
In fact I have read where parents that are facing this situation actually have more knowledge about the disease. They know better how to treat the symptoms than medical professionals. What is it like for the parent of a rare child when they are faced with a medical staff that lacks the specific knowledge needed? How stressful is it when they have to fight to get the care that their child needs?
Elsie said that other care providers would have probably just have accepted that the situation could not have been prevented. The whole thing caused her much frustration on many occasions. She was, however, surprised by her own ability to stay firm, using facts as weapons to fight for Marshall.
“I sought information from experts all over the world, sending videos of Marshall to ensure I was aware of the correct medication and approach to each different abnormal movement . I fought for him to have medication via a syringe driver which he did for 10 months which controlled seizures in a way other Batten sufferers never receive.” This statement makes me wonder if this technique is now being used by others. If not, then maybe it should be!
Elsie never left Marshall's side night or day when he had to be admitted over the last three years of his life. She never left the house the last ten months of his time on this planet because she felt that no one else could care for him as she could. You know what? That is total and complete devotion. Elsie left her position as a nurse to care for Marshall full time. At a certain point Lara decided that it was in the best interest of Marshall to give custody of him to her mum, Elsie. She puts it like this,
“I decided to send Marshall to live with my mum because she lived and breathed Marshall and I was by myself and quite honestly couldn't manage. My mum understood Marshall on a different level not just a medical one but an instinctive level. They loved each other most in the world.”
Oh my goodness! Once you combine statements like this to the photograph's of Elsie with Marshall, It presents a complete picture. These two shared a bond that was uncommon. It is one that may only exist in rare families such as these. In this case though, I think we are talking about something that is one of a kind. In fact I know that we are.
“It was just a fact that outside of HDU the experience necessary was not available. Marshall also became distressed if I left his side for even the shortest of moments. It was an exhausting time but I would have remained by his side for the rest of my life had I needed to.”
Marshall would experience the same set of circumstances that any child facing Infantile Batten Disease would. Trying to keep his oxygen levels where they need to be. Controlling seizures and keeping his lungs clear. There is no doubt that Elsie's constant attention and loving care of Marshall made all the difference. She minimized the effects of the disease on Marshall in the best possible way that she could. Marshall loved his Nana because of the bond they shared with one another. It started to grow from the very first time that she held him in her arms and it was unique. Like none other. It was only strengthened by the total devotion that she showed him. It is very uncommon for a grandmother to empty herself out for a grandchild in the way that Elsie did for Marshall. She walked away from her career in order to give him her undivided attention. Elsie stood by Marshall's side covering him in love and affection while assuring him that she would never leave his side. In the end Marshall would leave us to go be with his little warrior friends.
My son Benjamin is mostly non-verbal although he uses single words and sometimes surprises us with small phrases. I often times speak for him when I post his pictures on Facebook. I enjoy being his voice on social media and most of the time it is just for fun. Elsie would speak for Marshall in her Facebook posts as he was unable to do so for himself. When she did, it was on a much deeper level. You sense that Elsie felt what Marshall was feeling because of the deep connection that they felt towards one another. I bet that, yes it is possible, that Elsie could look into Marshall's eyes and know what he was thinking. She could feel what he was feeling. There were quite a few meaningful posts that Elsie did on Marshall's behalf. When I had received the okay from her to do this article there was one in particular that came to mind. I did a search and was so pleased that I was able to locate it. She did this post right at the end of Marshall's life:
“This will be my last message on here because by the time you read this I will be in Heaven. It's okay because nana has told me all about it and about all the wonderful things I will be able to do when I am there. There will be loads of slides and strawberries and cupcakes and I will be able to eat again and run and watch videos. I was worried that I would miss the people I love so much and that would make me sad but nana told me that the love people have for me is so strong it will be like they are there with me. Nana says I have been the bravest boy ever. When Batten disease stopped me from being able to use my iPad or feed myself or play games I still kept smiling. I never cried when I kept falling down all the time or when I stopped being able to eat food and had to have it put in a tube in my tummy. Nana says I just accepted everything that happened to me and kept laughing for as long as I was able to. And when I was no longer able move or talk or see. I loved listening to nana read out all the messages my friends wrote to me. You have been with me and supported me and loved me and I want to thank you from the bottom of my heart. But now I have to say goodbye. Be happy for me that I am no longer trapped in a body that stopped me from enjoying my childhood. I am now free to do all the things I have missed so very much. Lots and lots of love to you all, your Marshall xxxx”
The day that Marshall left for heaven, Elsie posted a picture of him laying in a bed. He had gained his wings. While the picture may have seemed ghoulish or just difficult to look at, the message did not escape me. As Marshall lay there he looked so peaceful. Resting in comfort. Gone from his surroundings were the pieces of medical equipment that were needed at any given time to help him survive the day. The sight of his beautiful face was no longer obscured by an oxygen mask. He was just laying there in his Batman pajamas, ever so peacefully. Marshal was now completely free from the disease that had him bound. Marshall was, and still is, Elsie Clark's world.
I am not one to force my views on people. However, I have to say that I believe each one of these children lives on in an eternal home. I believe that they are experiencing things that the human mind cannot completely comprehend. Things unimaginable to us here on earth.
This is not to say that this is all okay. It is not okay for a family to go through this and that is why we advocate for a cure to Batten Disease and all other rare and fatal childhood diseases. Progress is being made but it is far too slow in coming.
I have to say how much I respect Marshall's mum Lara for making the decision to turn over Marshall's care to Elsie. Even when it meant being separated from him. I am sure that it wasn't an easy decision but it was definitely the right one. The focus here has been on the relationship between Elsie and Marshall, however, it is so apparent to me that Lara just adored her little man. It was out of her love for Marshall that she made the decision to get him the best care possible. That care was through her own mother Elsie. I know that Lara's heart just aches over the absence of her son. When Marshall was five years old, Lara gave birth to Marshall's new little brother Troy. I can see that Lara is an excellent mum to little Troy. He is a little doll man just like his big brother Marshall. I can see that an attractive appearance runs in the family. Lara, I know that you have a bright future in front of you and I wish you the absolute best!
Elsie has pressed on as best she is able: “I have now returned to work and act normal and keep my feelings well hidden. Away from work I spend as much time as I can alone with my memories. It is exhausting being 'normal' but I am not someone that wears my feelings on my sleeve. Grief to me is like chronic pain. It's never going to go away, people don't want to hear about it all the time so you accept it will always be with you and find your own strategies for coping with it. Some days are better than others but it's always there.”
What about the people that are recipients of Elsie's care now that she has been through this experience? I don't mean to be overly dramatic but can they possibly understand? The people who have Elsie in their presence or who are under her care have no idea what makes her who she is.
“It's been 10 months since I stopped working so I could spend every precious moment with you. But tomorrow I will put my uniform on again. Loving you and nursing you has taught me so much and in your memory I promise others will benefit from my life with you. I take strength from knowing you will always be with me, my darling”
I followed Elsie and Marshall on Facebook as Marshall battled so bravely. I have noticed that families which are facing this same battle can handle things differently when it comes to social media. Some go about things somewhat privately and others do things on a larger scale to bring about greater awareness. Elsie was so busy caring for Marshall and she shared hers and Marshall's journey on a smaller scale. I paid attention. Her devotion to Marshall is a beautiful thing to behold. It was No Ordinary Love story and Elsie Clark, you are no ordinary Nana!
You rare families write these stories. I am just putting them into print. Thank you Lara and Elsie for allowing me to do so. Much respect and appreciation!
No Ordinary Love
There are two very fine organizations that are involved in the fight against Batten Disease. One is at work in the United Kingdom and the other is working here in the United States. I am including the links to both in case a person reading my blog wants to give to this most important cause.
In the UK :
In the U.S.
Highlighting a previous blog that might interest you:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...