Baby Nora must have been something to behold as her parents held her after welcoming her into this world. She was born at Heywood Hospital in Gardner Massachusetts on April 21, 2005. There was only one thing keeping her parents from looking ahead to all that she could accomplish in her life. That was the fact that they were mesmerized by her tiny and most perfect appearance.
There is no bond that exists like that which is between a mother and her child. Especially between a mother and her daughter. It is apparent from pictures and Jessica's comments that her bond with Nora was no exception.
I have now heard the testimonies and comments made by many parents that are either facing a the daily struggle of caring for a child that has a rare disease or who have lost a child to such. The absolute heartache that has been told to me by the now many is heartbreaking to the reader if it is allowed to sink in. I feel that I am personally drawn into these families story and I do my best to empathize with what they face.
Jessica had to be treasuring every moment of little Nora's life as she watched her grow. I am sure that the strong bond between the two of them continued to develop as Nora reached all the normal milestones that each parent looks forward to seeing their child achieve. Each new day would bring another memory to be treasured as the entire family looked forward to a bright future for little Nora.
This, however, was all interrupted as changes started to take place. The most notable was that Nora began to have seizures. Not just one or two, but more than could be counted accurately. This would lead to an early diagnoses of Uncontrolled Seizures. Like a lot of parents that go through such an experience, the exact day becomes etched in a person's memory. Jessica remembers that day which she will never forget. June the 25th, 2009. The early diagnoses would eventually give way to the news that Nora has Infantile Batten Disease. It has no cure and the parent who receives this news is faced with the knowledge that their child will live only from age six to twelve years. There are other forms and variations of the disease but the outcome is always the same.
As somebody that doesn't know Jessica and her family personally, I can only use the examples of others who's stories I have heard in understanding what the news they received did to them at that time. How devastated they must have been to know that their most perfect little person would go through all the stages of a most dreadful childhood disease such as Battens. My heart aches for any parent that receives this kind of news.
Anybody that is a parent of a Special Needs child understands that strength of the bond that develops as a result of their child's dependency on them. However, for the parent of a child that has a rare and incurable disease it becomes even stronger. I am thinking that the constant care for the child's very survival on a daily basis and the time spent by their side only serves to increase the bond exponentially. We are not members of the Batten Disease community, but I love my son Benjamin so much! I have to tell all of you that are parents of a rare child how much I respect you. The love and respect increases with each story that I hear or read about.
Sometimes I think about what it would be like to no longer have Benjamin in our house. Benjamin always has his little space or room no matter where we live. His room is cluttered with all his favorite things. At the center of it is his computer which he uses to play his John Madden football game. He doesn't play it like a normal 26 year old person would but he does so to his satisfaction and pleasure. He is surrounded by all his favorite stuff. Magazines and books with pictures. Toy cars and school buses. New England Patriot signs, football cards, and stuffed animals he has received over the years. What would it be like if he was missing and his room was still filled with this stuff. More days than not, I walk into his room after returning from a long day at work. I will wrap both arms around him and put my face right up next to his. I tell him things like what an awesome person he is and how lucky I am to be his dad. What if he was no longer there? What if I couldn't wrap my arms around him anymore?
What would it be like to be the parent of a child with a rare incurable disease. Your days are filled with the constant care of your child. As the disease progresses the level of care needed increases. The trips to the doctors and the stays at the hospital increase. The level of home care and procedures increases but you do it because of your love for your child. Simple things like bathing become increasingly more difficult. The number of procedures required on a daily basis and the medications needed for the child's very survival go up. Your house may become more cluttered with medical equipment and perhaps the gifts from friends and well wishers fill your child's room. As a result, the bond gets stronger as you battle through each day. Your child is a little warrior and you warrior on as well. And then....
There is a lot of heartache in this world and life can be so cruel. It is so hard to work through this thought process. I know that God loves children and heaven is for kids such as these. God, I hate Batten Disease although I cannot fathom the heartache it produces. What the parent that faces it feels like as they and their child goes through it together.
Each child that faces Batten Disease will gain their wings. My desire, along with many others, is that this changes sooner than later. The Teal colored angel wings that each child receives symbolizes freedom. These wings symbolize freedom from a body that no longer functions as it should. Freedom to fly away to an eternity without pain or suffering.
Nora Skye Montville gained her wings on Thursday, The 2nd of February 2017. she was 12 years old. You know that means? It means she was a real warrior as well as Jessica's princess. She fought long and hard and has now gained her reward which is eternal.
Nora, you ARE beautiful and I know just where you are!
I know that Jessica misses her baby so much and it is probably more than she can process right now. I am certain that this whole experience will lead to a greater inner strength and resolve to move forward. Her bank of fond memories will be filled full. Not only with those of Nora's perfect little appearance as a preschooler but also, of every precious memory that took place as she cared for her daughter with Batten Disease. Jessica, take some deep breaths. Job well done dear girl! And I know, it is easy for me to say.
This turned out to be an extremely difficult week for the wonderful folks that make up the Batten community. Nora was joined by both Effie and Kaitlyn. I also heard that there were two additional children that gained their wings.
Again, I cannot begin to express to all of you how much respect that I have for each family that endures such a trial by fire like Batten Disease. My hearts desire is that those of us on the outside will support you in finding a cure through greater awareness and action!
There are, of course, other childhood diseases that need more attention. These are our kids! My friend Sandra has a short bio on her Facebook page that I love. She states this about herself when she says “I love people they are my true passion. We are here for others not only ourselves.” Sandy has it right! That is why we advocate for the funding and research for the cure of childhood diseases through awareness on social media.
My only regret is that I have to work full time in an unrelated field. But then again, I do that for my Benjamin and his sweet mom!
If you have been reading my blog up until this point, you already know that a little warrior princess named Ali Vise has become very significant to my life. Her little life will always be intertwined in my consciousness with the life of a a Navy SEAL named Adam Brown. Adam gave his life defending our freedom while serving in Afghanistan. They are both hometown heroes to the people of Hot Springs Arkansas.
Every year around Saint Patrick’s Day Adam Brown’s family holds a 5K run in Hot Springs to honor Adam. It has turned out to be a big event and people travel from all over every year to attend.
Donya asked me about coming to the 5k in 2014 and said that other Ali’s Angels would be there. Rose and I talked it over but decided that there was no way that I could afford to go. We were in the red. My feelings were a mixture of being flattered that Donya would ask and that of being disappointed. We thought that perhaps I could make it the following year, but I could see from Donya’s posts that Ali was taking a turn for the worst. The disease was progressing and I began to become anxious. When something is important to you, you find a way. I found a way. I sold my house! It was a rental of course. Not our primary residence.
I discussed it with Rosie. I told her that we could sell the place and fly the three of us to Arkansas to meet Ali and Donya. I could take diving lessons and dive Fearless Rock with Will Stevens. If you have been reading along, you know that Fearless Rock is an underwater memorial that was built by Will and his team to honor Adam. I posed the question to Rosie and she said yes!!!
Ali was my inspiration and reason for going at that time. Diving Fearless Rock and meeting Will Stevens was the icing on the cake. I Didn't want to sit on the couch and miss out on what I thought would be the opportunity of a lifetime. These folks became so important to me and the opportunity warranted this type of action. I felt like I needed to go the extra mile in order to establish a lasting relationship that goes beyond the casual. Has it made a difference?
I hope so! I know that I will never be the same.
In almost 35 years of marriage we had never really been on a vacation, or even a real honeymoon for that matter. My dad paid for us to take the kids to Disneyland when they were younger and there were a couple of long trips to visit family, but that was it. Here it was, year 2014, and we were going to travel from Oregon to Hot Springs to meet Ali and her family, and also for me to dive Fearless Rock. I don’t think that I had ever been more excited.
Everything went as planned and the trip was on. This was Benjamin’s first airplane ride ever. We told him that he was going to ride on the bus with wings and he did an awesome job of flying. We flew 2300 miles and there we were, in Little Rock.
Like so many of Ali’s Angels, I had looked at the many pictures and videos of Ali that had been posted by Donya. I had written my own posts about the respect that I had for these people for sharing their journey with all of us. There had been many chats on Facebook and now we would get the chance to meet.
As we waited in the parking lot at Applebee’s in Hot Springs, they rolled up in the Miracle van. A van that had been donated to Donya for Ali. Donya got out and gave us a hug before opening the door to the van, and then, there she was…Princess Ali. Absolutely the prettiest little thing I had ever seen in my life.
Most people that read my blog know that Ali's mom Donya Catlett formed a non-profit organization named Ali's Angels Foundation after Ali gained her wings. Donya was also inspired to build a park in her community named after her Angel. The park will be called Ali's Wonderland. It will be an all-inclusive barrier-free park that will serve the people of Hot Springs, as well as people in the surrounding communities. For her actions in the community, Donya has received the Spirit of Arkansas Award. This park is much needed in the area it will be built and it will serve people in our society that are very deserving of our help. As a family, we have supported the building of Ali's Wonderland financially. We would encourage everybody that reads this blog to get involved through giving to Ali's Wonderland. You can learn more about supporting the project by clicking on the following link:
As was previously stated in my last blog entry, there has been a GoFundMe account set up yo assist Jessica with Nora's memorial expenses. Any and everything helps. You can give by following the link bellow. Please do if you are able:
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017