As I am getting started, it is the Saturday before Christmas and I felt like writing. I am enjoying what is the beginning of four days off. Oh how I love time away from work. It has been a busy fire season for my company which fights fires with helicopters and I am thankful for the steady work that my job has provided me this year. We are not getting rich by my being there but it overall affords us a reasonable standard of living. Benjamin has his little space in our little rental house and he seems to enjoy his time in the “Man Cave”. Rosie stays really busy caring for him and she does an excellent job with the house and all the household responsibilities. She often works harder than I do! The three of us really enjoy being with one another. I can remember times when I thought that I was slighted by my situation. That being a single income family and the father of a special needs adult. There are other things as well. I had often felt like I had missed out on things because of decisions that I had made or ones I had failed to make. For example, I could have made better decisions with my career. Decisions for life in general. I really do not think that way anymore though. As I have learned, things often happen the way they do for a reason. People are often placed in our lives to effect change and I believe that has happened to me.
Blogging about Batten families has changed my life in a very profound way. It has given me a purpose in life that I never could have imagined possible and it has shown me some things about myself that were unknown to me. I could be writing about a lot of different things I suppose. I have had suggestions by people at work. Suggestions about how to use the blog to make money and different types of audiences that I could gain by creating stories. For example, maybe blog about the aviation field. That would be enough to make anybody want to take a nap! I actually never had a plan for being a writer. It all just happened. Well, maybe it all didn’t “just happen”. I have already told my audience how the entire thing went from sharing my own experiences to sharing the stories of the wonderful people that make up the Batten community. Why the Batten community? Well read the blog entries titled The Blog About My Blog and Those That Are Like Them, if you want to know.
Writing about these dear families has changed my life. Now there is always room for improvement when it comes to my motives. It is not as if I am completely unmotivated when it comes to serving myself. I will say that overall, I do gain from knowing that what I write is a help to others. One thing that I hear people say is that the blog helps to spread awareness about Batten Disease. I cannot tell you how satisfying it is to hear things like this. I gain a lot from knowing that I have carved my own niche for spreading awareness. It was never my intention to do that though. It just happened. Well, maybe it didn’t “just happen”. Like anyone that writes, I like to know how many people are viewing my blog. When I look at the statistics that are provided, the average page views are around 230 per day after a new blog entry is made. Of course, the numbers can be much higher right after an entry is made and sometimes they are. Much higher. On a slow day, there is 100 plus views. So yes, it does help spread awareness but that has not been my complete purpose for writing. In fact it was not my original thought. I have said it in the past and I will say it again. It is the details of what Batten families go through that inspires me to write. Do you want people to know who your child is? Some have said that they don’t want their son or daughter to be forgotten. I think that having their precious stories in writing helps with that.
Can you imagine the shock of being told that your child has a disease for which there is no cure. You are told that the disease is fatal and it will take the child through various stages of decline. The course of it is unstoppable. What these families go through. The love for their child and the bond that motivates them to keep going is without parallel. It is only equaled by the families who care for the other types of little warriors that battle a different disease. I was talking to our dear friend Sandy Garrett today and she was devastated over the loss of one of the cancer warriors that she follows. This happened on the 23rd of December. Two days before Christmas. She was crushed and was looking for answers. I am not sure that I was able to help her make sense of it but I listened to her and tried to help. Both of us have health issues but we are both still here. Why do these kids have to suffer the way they do? As for me, I know that heaven is real for these kids but I still question why more isn’t being done to find cures for childhood diseases. Why isn’t there more emphasis placed on America’s greatest assets. Why don’t more people care. It is Christmas and I am so sorry that there are families out there that are grieving the loss of a child over the course of the year. There have been some very notable losses within the Batten community this year and I know in other childhood disease communities as well. It is the goal of those of us that are advocates to get more people involved through greater awareness. That right there is one of the things that I want for Christmas. More awareness. More funding. More research. More hope!
I am a cancer survivor but so are a lot of other people. In my case, it was caught early and I have lived an additional 30 years. I have other health concerns, one of which is diabetes. I just need to be sensible and take the best care that I can. I feel that part of my reason for being on this planet is being Benjamin’s Daddy and I hope to be so for as long as I can. The thing is that I have had plenty of time to live my life. I am growing into oldguyhood now. It seems like something is not right when a child has to face something like Battens or cancer. Children and their perfect little faces are something that all but the most cynical enjoy looking at. Their little features are unobscured by the lines that age and life’s difficulties bring. Yes, they have their little ways of showing us that they belong to the human race but their childlike innocence is something that we all enjoy. The total cuteness and the innocent questions should not include a look that seems to ask the question, why do I hurt so bad? So yes, a desire to spread awareness has been a big part of what I do. But there is more.
I feel deep in my heart, that there is something very special about a family that faces the challenges of caring for a child with a fatal disease. To know what the eventual outcome could be if no cure is found and to move forward while facing the many challenges is truly something courageous. I will always be blown away by the fact that my work as an advocate started because I followed the legacy of a fallen member of SEAL Team Six. I will forever hold the people in our military in a very high regard. Especially those that make up the Special Operations community. But there is another group of individuals that have a special status with me. That is the parents that care for these kids. The demands are great. Most people that follow Batten families know that there is an enzyme replacement therapy available for some of the families that face the CLN2 variant. I am so happy that this progress has been made and I wish more would take place. This treatment requires that the families travel to the hospital every two weeks for the treatment. It often requires hours of travel time and sometimes requires that a family changes geographical locations. There are many other sacrifices that could be mentioned. All Batten families are dedicated to helping their child to live the highest quality of a life as they battle the disease together. I have this vision of a father leaning over the top of his child who suffers from pneumonia or uncontrolled seizures. What about the mom that has spent hours, over and over again, with her child at the hospital. This time she hopes and prays that her little warrior will be well enough to make it home for Christmas. What about those families that have faced loss this year. Their child is spending his or hers first Christmas in heaven and mom and dad are experiencing the emptiness of a missing child. Not just any child but one they have cared and sacrificed for. The bond cannot be broken! I am really mindful of those families this Christmas.
Awareness? Yes, but there is something that I really appreciate about being given the opportunity to write about these dear families. That is honoring their sacrifices by telling others about what they have gone through or what they currently face. Honestly, you have my love and respect, whether or not you want it. So that is really what the purpose of my writing is. It is for honoring the families and their brave little warriors. Some are little children. Some are teens and some are even young adults. I have shared the words by an outstanding Batten mom before and I will do it again here. Bekah Bowman wrote this, in part, concerning the goal of this blog. She could see it by reading the words and here is what she said,
“Every time I feel a little like a broken record as I share, whether in person somewhere or on social media, I run into yet another person who has never heard of this disease. There is more to sharing our stories than just the awareness, as you stated so well. While you share "batten stories", each family has their unique journey of traveling through such brokenness and every one of those kids and their families have something valuable to teach the world. I love that you continue to share my fellow batten family's stories. They are all incredible stories of courage, pain, joy, beauty, grief, love and more. All deserve to be told.”
Thank you SO much Bekah. So another thing that I really want for Christmas is the opportunity to tell more of these family’s stories. I am always open to being contacted by parents who would like me to write about them and their child’s journey. I will also look for those who I feel might be interested but please don’t be afraid to ask. I have talked to a couple of my fellow advocates about doing the stories of other types of little warriors. I hope that this happens because their stories deserve to be told too and again, it would be my privilege to do so. Over the course of this last year, I have blogged about families from all over the world. All while working full time. This has become my passion. Do you know what a privilege this has been for me? The more that I have done, the more detailed they have become. It takes a lot of mental work and preparation but I love doing it. I have shed a lot of tears over this year and I am not afraid to tell people that. I really get moved by the details and I begin to feel connected to those that I write about. Thank you so much to those that have placed their trust in me. Thank you also to those that take the time to read these stories. You have no idea how much I appreciate all of you. I have said it already but will say it again. From Greg, Rosemarie, and Benjamin. We wish you a Merry Christmas and a Happy New Year.
So did you get what I want for Christmas? I want a cure to Battens and other fatal childhood diseases. I also want the opportunity to write about the little warriors who will battle until those cures are found!
Blogger and Advocate
Noel İçin Ne İstiyorum
Burada otururken, Noel öncesi Cumartesi ve yazmaya bayılırım. Dört günün başında olanın tadını çıkarıyorum. Oh işten uzakta zaman seviyorum nasıl. Helikopterlerle çıkan yangınları savuşturan şirketim için yoğun bir yangın sezonu oldu. İşimin bana bu yıl vermiş olduğu sürekli iş için müteşekkirim. Orada bulunmakla zenginleşmiyorum, ancak genel olarak bize makul bir yaşam standardı sağlıyor. Benjamin küçük kiralık evinde küçük bir alana sahiptir ve "Man Mağarası" nda vaktini yaşamaktadır. Rosie gerçekten ona bakmakta çok meşguldür ve ev ile tüm ev sorumluluklarıyla mükemmel bir iş çıkarır. Sık sık benden daha çok çalışır! Üçümüz birbirimizle olmaktan gerçekten keyif alıyoruz. Durumum tarafından incitildiğimi düşündüğüm zamanları hatırlıyorum. Tek gelirli bir aile ve özel bir yetişkin babası olmak. Başka şeyler de var. Yaptığım kararlar veya başaramadığım kararlar yüzünden çoğu kez şeyleri gözden kaçırmışım gibi hissettim. Örneğin kariyerimle daha iyi kararlar verebilirdim. Hayat için genel kararlar. Artık böyle düşünmüyorum. İşler sıklıkla yaptıkları gibi olurlar. İnsanlar çoğu zaman hayatımıza değişiklik yapmak için yerleştirilir ve bunun bana olduğuna inanıyorum.
Blogumum hayatımı çok derin bir şekilde değiştirdi. Hayatta asla hayal edemeyeceğim bir amaç veriyor ve bana göre bilinmeyen bazı şeyler gösterdi. Herhalde çok farklı şeyler hakkında yazıyor olabilirim. İş yerinde insanlar tarafından önerilerim oldu. Para kazanmak için blog'u nasıl kullanacağınız ve hikayeler oluşturarak kazandırabilecek farklı kitlelerle ilgili öneriler. Örneğin, havacılık alanıyla ilgili blog yazabilir. Bu, kimsenin kestirmesini istememek için yeterli olur! Asla bir yazar olmak için bir planım olmadı. Her şey oldu. Belki de hepsi "başımıza gelmedi". Kitlenize, kendi deneyimlerini paylaşmaktan, Batten topluluğunu oluşturan harika insanların hikayelerini paylaşmaya kadar her şeyin nasıl gittiğini çoktan söyledim. Neden Batten topluluğu? Bilmek istiyorsanız, blogum Hakkında Yazıları ve Blogum Hakkında Blogu ve Bunlara Ait olanlar'ı okuyun.
Sevgili aileler hakkında yazdım hayatımı değiştirdi. Dürtülerime gelince, gelişme için her zaman yer var. Kendime hizmet etmeye gelince tamamen motive edilmez gibi değilim. Genel olarak, yazdıklarımın başkalarına bir yardım olduğunun farkında olarak kazanacağımı söyleyeceğim. İnsanlara duyduğum şeylerden birisi, blogun Batten Hastalığı hakkında bilinçlenmeye yardımcı olması. Bunun gibi şeyleri duymanın ne kadar tatmin edici olduğunu söyleyemem. Farkındalığı artırmak için kendi mihrabım oymuş olduğumdan çok şey kazanırım. Bunu yapmak benim niyetim değildi. Henüz oldu. Belki de "daha önce olmaz". Yazan herkesi beğenirim, blogumu kaç kişinin görüntülediğini bilmek isterim. Sağlanan istatistiklere baktığımda, yeni bir blog girişi yapıldıktan sonra ortalama sayfa görüntüleme sayısı günde yaklaşık 230'dur. Elbette, sayılar bir giriş yapıldıktan hemen sonra daha yüksek olabilir ve bazen de öyle olabilirler. Çok daha yüksek. Yavaş bir günde, 100 artı görüntüleme var. Öyleyse evet, farkındalığın yaygınlaştırılmasına yardımcı olur, ancak bu yazının tam amacım değildir. Aslında bu benim özgün düşüncem değildi. Geçmişte söyledim ve tekrar söyleyeceğim. Batten ailelerinin bana yazdıklarından esinlenerek verdikleri ayrıntılar bu. İnsanların çocuğunuzun kim olduğunu bilmesini ister misiniz? Bazıları, oğlunun veya kızının unutulmasını istemediklerini söyledi. Bence kıymetli hikayelerini yazılı olarak yazmak bu konuda yardımcı oluyor.
Çocuğunuzun tedavi edilmediği bir hastalığı olduğunu söylenmenin şokunu hayal edebiliyor musunuz? Hastalığın ölümcül olduğu söylenir ve çocuğu çeşitli düşüş evrelerine götürür. Tabii ki durdurulamaz. Bu ailelerin geçtiği şey. Çocuğa duydukları sevgi ve onları sürdürmeye motive olan bağ paralel değildir. Buna yalnızca, farklı bir hastalığa karşı savaşan diğer küçük savaşçı tiplerine bakan aileler eşittir. Sevgili dostum Sandy Garrett'le bugün konuşuyordum ve takip ettiği kanser savaşçılarından birinin kaybedilmesi üzerine harap olmuştu. Bu 23 Aralık'ta oldu. Noelden iki gün önce. Ezildi ve cevap arıyordu. Ona mantıklı gelmesine yardımcı olduğumdan emin değilim ama onu dinledim ve yardım etmeye çalıştım. İkimizde sağlık sorunları var, ama ikimiz de hâlâ buradayız. Bu çocuklar neden yaptıklarıdan acı çekmeli? Bana gelince, cennetin bu çocuklar için gerçek olduğunu biliyorum, ancak neden hala çocukluk hastalıkları için iyileştirme bulmak için daha fazla şey yapılmadığını sorguluyorum. Amerika'nın en büyük varlıklarına neden daha fazla önem verilmiyor? Neden daha fazla insan ilgilenmiyor? Noel'dir ve yıl boyunca bir çocuğun kaybolması için üzülen aileler var için çok üzgünüm. Bu yıl Batten topluluğunda kayda değer bazı kayıplar yaşandı ve diğer çocukluk dönemi hastalık toplumlarında da biliyorum. Daha bilinçlendirmek yoluyla daha fazla insanın yer almasını savunanlarımızın amacı budur. İşte doğru Noel için istediğim şeylerden biri. Daha fazla farkındalık. Daha fazla para yardımı. Daha fazla araştırma. Daha fazla umut!
Ben kanserden kurtuldum, fakat diğer insanlar da öyle. Benim durumumda erken yakalandı ve 30 yıl daha yaşamıştım. Bir diğeri şeker hastalığı olan diğer sağlık endişelerim var. Sadece mantıklı olmalı ve elimden gelen en iyi bakımı yaptırmalıyım. Bu gezegende olma sebebimin bir kısmının Benjamin'in babası olduğunu hissediyorum ve elimden geldiğince uzun süre devam etmeyi umuyorum. Mesele şu ki hayatımı yaşamak için çok vaktim oldu. Artık eski güce dönüşüyorum. Bir çocuğun Battens veya kanser gibi bir şeyle yüzleşmesi gerektiğinde bir şey doğru değil gibi görünüyor. Çocuklar ve onların kusursuz küçük yüzleri, en alaycı bakışların tadını çıkarmanın keyfini çıkaran şeylerin hepsidir. Onların küçük özellikleri, yaş ve yaşam zorluklarının getirdiği çizgilerle belirsizdir. Evet, insan ırkına ait olduklarını bize göstermek için onların küçük yolları var ama çocuksu masumiyet hepimizin keyfini çıkarabileceğiniz bir şey. Toplam şirinlik ve masum sorular, neden bu kadar çok incinirim soruyu soran bir görünüm içermemelidir? Yani evet, farkındalık yaymak isteği, yaptığımın büyük bir parçası olmuştur. Ama daha fazlası var.
Ölümcül bir hastalığı olan bir çocuğa bakmanın zorluklarıyla yüzleşen bir aile hakkında çok özel bir şey olduğumu kalbimde derin hissettim. Hiçbir tedavinin bulunmaması durumunda nihai sonucun ne olduğunu bilmek ve birçok zorluklarla yüz yüze ilerlemek gerçekten cesur bir şeydir. Bir savunucusu olarak çalışmalarımın başladığı gerçeğinden daima uzaklaşacağım, çünkü SEAL Takım Altı'nın düşen üyelerinin mirasını izledim. Askeriyedeki insanları sonsuza dek çok yüksek oranlarda tutacağım. Özellikle Özel Harekat topluluğunu oluşturanlar. Ancak benimle özel statüye sahip başka bir grup insan var. Bu çocukları ilgilendiren ebeveynler budur. Talepler harika. Batten ailelerini takip eden çoğu insan, CLN2 varyantıyla yüzleşen bazı ailelerde mevcut olan bir enzim replasman tedavisinin olduğunu biliyor. Bu ilerlemenin gerçekleşmesinden çok mutluyum ve daha fazla gerçekleşmesini diliyorum. Bu tedavi ailelerin tedavi için her iki haftada bir hastaneye gitmesini gerektirir. Genellikle saatlerce yolculuk süresine ihtiyaç duyar ve bazen bir ailenin coğrafi yerleri değiştirmesini ister. Bahsedilebilecek başka pek çok fedakârlık var. Tüm Batten aileleri, çocuğun hastalıkla birlikte savaşırken en yüksek kalitede yaşamanıza yardımcı olmaya adamıştır. Zavallı pnömoni veya kontrol edilemeyen nöbetler geçiren çocuğunun üstünde eğilen bir baba vizyonuna sahibim. Çocuğunu hastanede geçirdiğinde, birkaç kez, tekrar tekrar harcanan anneye ne oldu. Bu sefer küçük savaşçısının Noel'e ev sahipliği yapacak kadar iyi olacağını umuyor ve dua ediyor. Bu yıl kaybedilen ailelere ne oldu? Çocuğu ilk Noel'i cennette geçirirken annesi ve babası eksik bir çocuğun boşluğunu yaşıyor. Sadece herhangi bir çocuk değil, bakım ve fedakarlık yaptıkları bir çocuk. Bağ tahrip edilemez! Bu Noel'teki ailelere gerçekten dikkat ediyorum.
Bilinci? Evet, ama sevgili aileler hakkında yazma şansını değerlendirdiğim için minnettar olduğum bir şey var. Bu, fedakarlıklarını, başkalarına neler geçirdiklerini veya şu anda yüz yüze olduklarını anlatarak onurlandırıyor. Dürüst olmak gerekirse, ister istemesen de sevgime ve saygıma sahip olursun. Yazığımın amacı gerçekten de öyle. Bu, aileleri ve cesur küçük savaşçılarını onurlandırmak içindir. Bazıları küçük çocuklar. Bazıları genç, bazıları da genç yetişkinlerdir. Kelimeleri olağanüstü bir Batten annesi tarafından paylaştım ve burada tekrar yapacağım. Bekah Bowman, bunu kısmen bu blogun amacıyla ilgili olarak yazdı. Kelimeleri okuyarak görebiliyordu ve burada şöyle dedi:
"Ben şahsen bir yerde ya da sosyal medyada paylaştığım gibi kırık bir rekor gibi biraz hissettiğim her seferinde, bu hastalığı daha önce hiç duymamış bir başka kişiye rastlıyorum. Hikayelerinizi çok iyi ifade ettiğiniz gibi yalnızca farkındalık kadar paylaşmak için daha fazla şey var. "Çöp hikayeleri" ni paylaşırken, her ailenin böylesi kırılmalarla eşsiz yolculukları vardır ve bu çocukların ve ailelerinin her birinin dünyayı öğretmek için değerli bir şeyleri vardır. Diğer pilavın hikayelerini paylaşmaya devam etmenizi seviyorum. Hepsi cesaret, acı, sevinç, güzellik, keder, sevgi ve daha fazlasıyla ilgili inanılmaz hikayeler. Tüm söylenecek hak. "
Çok teşekkür ederim Bekah. Noel için gerçekten isteyeceğim başka bir şey, bu ailenin hikayelerini daha çok anlatma fırsatı. Onlarla çocuklarının yolculuğu hakkında yazmamı isteyen ebeveyne her zaman açıktır. İlgini çekebileceğini düşündüğüm kişileri de arayacağım, ancak sormaya çekinmeyin lütfen. Birkaç arkadaşım savunucusuyla, diğer küçük savaşçılar hikayelerini anlattığım için konuştum. Umarım bunun nedeni, hikayelerinin çok ve tekrar söylenmesi haklısın, bunu yapmak benim ayrıcalıklarım olacaktır. Geçtiğimiz yıl boyunca, dünyanın her yerinden aileler hakkında blog yazdım. Tam zamanlı çalışırken. Bu benim tutkum oldu. Bunun benim için bir ayrıcalık olduğunu biliyor musun? Ne kadar çok şey yaptıkça, onlar da o kadar detaylı hale geldi. Çok zihinsel çalışma ve hazırlık gerektirir, ancak bunu yapmayı çok seviyorum. Bu sene çok göz yaşarttım ve insanlara söylemekten korkmuyorum. Gerçekten detaylarla ilgileniyorum ve hakkında yazdığım kişilere bağlı hissetmeye başlıyorum. Bana güvenenlere çok teşekkür ederim. Bu hikayeleri okumak için vakit ayıranlara da teşekkür ederim. Hepinize ne kadar minnettar olduğum hakkında hiçbir fikriniz yok. Ben zaten söyledim ama tekrar diyecekler. Greg, Rosemarie ve Benjamin'den. Mutlu bir Noel ve Mutlu Yıllar Dileriz.
Noel için istediğimi aldın mı? Çatalılara ve diğer ölümcül çocukluk hastalıklarına karşı bir çare istiyorum. Bu kürler bulunana kadar savaşacak küçük savaşçılar hakkında yazma fırsatı da istiyorum!
Blogcu ve Avukat
It is Christmas time! Christmas is for families to celebrate being together. Many from all over the world will celebrate the birth of a very special baby! Adults look forward to having time off and winding down for a bit. We look forward to spending extra time with one another. We look forward to the activities that come with the holiday. Everything about Christmas lights up our senses. Christmas is for everyone but it is especially for kids. For children, Christmas time is magical. The anticipation that it holds for them is both precious and a provider of priceless memories.
I have made it clear in my previous blogs that I love kids. Equally, it could be said that I love people with special needs. I also have come to love children and young adults with rare diseases. Mainly, there is a community that I care about. That is the families and their children that make up the Batten community. This doesn’t mean that there aren’t others. I love little warriors in general. Anybody that knows me personally, knows that I love my son Benjamin to the moon and back. He is a really special guy. Benjamin has two brothers, and they are very special as well. They are special in the normal sense. Both are successful in their own way. Daniel is the oldest and Kenny is the middle son. Benjamin is our baby at age 27. We always have joked that we wanted a girl on our third try but got a Benjamin instead. I am so happy that we did. He brings so much joy into our house. Dad is getting older and more sentimental as time has gone on. This is all being fed by following kids with Battens but it has always been there in relationship to Benjamin and those that are like him.
Is Benjamin responsible for my sensitivity to the people in the rare disease community? Does my involvement on social media with the Batten community make me appreciate my special needs son more? The answer to both questions is a big YES. It is because of the fact that I have a sensitivity to special needs people that I am also sensitive to Batten warriors and other warriors that are like them. I have shared Benjamin’s life with others on social media and the outpouring of love towards him has touched me. This has increased my appreciation for those who battle Batten Disease, as well as, other types of little warriors. I see the love that some people have for Benjamin and it makes me love my son and those that are like him all the more. Benjamin’s story is a big part of who I am as a person. His story though, begins with that of another. Both stories are about people that are a gift to me.
There was a little girl that lived in the state of Oregon in the USA. Her parents loved her and of this there was no doubt. She had dark blonde hair and big brown eyes. She looked so sweet and her appearance held no deceit. She really was just like that. Although her parents loved her they were unable to care for her in the way that was needed. Sad as it may have been, she had to be placed in foster care. So it was that she appeared on the front door step of a home belonging to a minister and his family. The family was large and there was so much need already. There was, however, no way that she could be turned down once her appearance was made known. She became one of seven siblings and she would grow up in a very happy home. Within all those years spent with her adopted family there were no doubt truckloads of priceless Christmas memories. This because after all, Christmas is for kids and those that are like them! Although life had its struggles for her she would go on to overcome and achieve. She had many things that she enjoyed as she grew. One of the most important of which was being with and caring for children. That is where Benjamin’s story begins because his story begins with his mom’s story. That being Rosemarie Jean, or as she is better known, Rosie! That she happens to be my sweet wife is no accident!
Does that sound a little bit like a fairy tale? I am sure that there are many that have stories of their own to tell. Like I have already stated, all of my kids are special to me but Benjamin is special because his needs are special. His story comes out of my wife’s own special circumstances. That is why I am including a few of her details. Rosie grew up on the Oregon coast and then central Oregon. I grew up in California. In San Jose to be exact. We met each other while serving on active duty in the Navy. That was all the way near New Orleans Louisiana at NAS New Orleans. She caught my eye and that was it. To this day she is my best friend and it was 37 years ago that we met. Just like most any couple we wanted to have a family and so we did. You could tell that our first son Daniel was brilliant from a very young age. He is a successful IT professional now. Daniel’s middle brother Kenny is highly intelligent as well. He is self employed and does quite well. Trust me when I say that they do not get their intelligence from me.
Benjamin was born on April the 4th of 1990. We had moved from San Diego to Gilroy California and that was where Benjamin came into this world. He was born at South Valley Hospital. It never dawned on us that we might become parents to a special needs person. My wife’s biological mother was affected much like Benjamin would turn out to be. We however, were fixed on the fact that both his brothers were fine. Whereas Benjamin’s older brother Kenny had met or exceeded all his milestones, Benjamin did not. He was sick a lot. In fact, it wasn’t until we were told about a special baby formula that he began to get better. Constant ear infections and congestion were the biggest concerns at the time. He was just slower in everything that he did. Slow to pick his head up and to sit up on his own. He was slow to stand up and slow to walk. He would need a wheelchair to get around. We received help from Shriner’s hospital in attaining custom AFOs for ankle support and this helped him to learn how to walk. They did for us what our private insurance often failed to do. In the course of time we would become aware of the fact that Benjamin was developmentally delayed. That is, in fact, a big part of his condition to this very day. While being seen at Shriner’s hospital, he was seen by a geneticist who would do testing to determine a diagnosis. While she found evidence to suggest that Benjamin has a degenerative disorder, she could never give him a diagnosis.
Benjamin would have his first seizure when he was about nine months old. That was a complex or grand mal seizure. These days they are well controlled by medication but the amount that he needs would be of concern to most parents. Which is worse? The medication or the seizures? Along the way, he has experienced, grand and petit mal seizures, as well as absence seizures. One type, which name escapes me, involved him starting out in a deep belly laugh. He would then go into a grand mal. We love to laugh together but in that case you had to be careful. At age seven Benjamin Had an incident that landed him an extensive stay in the hospital. He aspirated into his lungs. He was taken by ambulance to the hospital and then life flighted to another facility that provided the care that he needed. The doctors said that he couldn’t be any sicker and we have never come any closer to losing him. Benjamin is a gift. I know that Aspiration is a common problem with children that have certain variants of Batten Disease. We understand but we would never compare our situation with someone in the Batten community. Your plight is as rare as the disease itself and you have our love and respect in the biggest way.
Over the course of time, Benjamin has been placed in several classifications by school systems and county programs. Cerebral Palsy, Neuromuscular disorder to name a couple. He is Autistic for sure and he functions at different levels in various areas of development. He is mostly non verbal but uses a combination of signs and single words. As time has gone on, and his weight has increased, he has become unsteady on his feet. He has issues with his equilibrium. You can sense his frustration at times with his inability to control his body’s function. He tends to get over stimulated and excited at times. This is revealed by a violent form of rocking and flailing of his arms. He can also use these same gestures to show happiness and excitement. There have, for sure, been problems along the way. There have been challenges and concerns. Only God knows how long we will have him. Benjamin is a warrior of a rare kind but his longevity is as unknown as his disorder. My son is a gift.
One thing was evident through all of this. That is that Benjamin has his mother’s sweet disposition. Many times, people that have met him talk about what a sweet spirit he has. I know one thing. Mom and dad are crazy about him. Yes, it is true. We should be enjoying the benefits of an empty nest. The benefits of having him in our home are to us, so much greater. Benjamin is his mom’s mini-me even though he now towers over her. I call them the twins or ‘My Two Faces’. We are very closely knit together. Can you tell?
Yes it is true that I love kids. I love kids and I also love those that are like them. The biggest and most present characteristic of Benjamin’s disorder is the fact that he is developmentally delayed. When it comes to his development he is varied in how far he has advanced in any particular area. One thing is for certain. He has kept his childlike innocence for a lot longer than a normally developing person would. Oh yes, he can get his grouch on, but there usually has to be a reason for it. When he is in a good mood, which is most of the time, he is oh so sweet. He loves to smile and his smile is infectious. The two of us are especially close and there has been tons of laughter while spending time together. Some of the best pictures have come as a result of dad making Benjamin laugh. I couldn’t imagine him missing from my home and so this makes me think of all of you who are missing a loved one. You may be one of the many that have lost their young warrior to Batten Disease. I could be talking about someone like my friend JoAnn Caudle who lost her special needs son Tommy to cancer. Whoever you may be, it is my heart’s desire that you would find peace during this holiday season.
Just like any other one who is childlike, Benjamin enjoys the wonders of Christmas. When the decorations go up, the anticipation begins. Benjamin has a room full of toys and many of them come from Christmases past. It seems that most of the time the toys just sit there unnoticed. He loves buses and stop signs more than anything. I had bought him a toy city bus one year and I thought that he would absolutely love it. He opened it and just set it off to the side. I was like oh well, I tried. You know what though? He came back to it and he often keeps it on his desk right where he plays. He is aware of things but you cannot always tell. He will take it with him from time to time. Benjamin has a lot of school buses. He rode on them frequently when younger, so thus, the fixation. There is an end table and a chair in his little playroom or ‘man cave’ as we like to call it. I like to eat my breakfast in there early before going to work. It is always dark when I go in and I have to feel my way through to the end table and the lamp that is on it as I go to put my cereal bowl down. Sometimes the little table has a lot of toys on it and I will think that my wife has rearranged things. I will mutter something under my breath but as It turns out it is actually Benjamin that is responsible. He is paying attention but you would never know. That is an aspect of his autism and his delay. One year, I was thinking to myself that he had enough toys and that we should only get him clothing and other things for Christmas gifts. As he finished opening all of his gifts he looked at me and said the words ‘toys’. My heart sunk within me. In his deep voice he said ‘toys’. Christmas is for kids and those that are like them. Benjamin, you will always get toys on Christmas from now on. I promise!
When it comes to Christmas, I love to give gifts. In fact, I love it more than anything. I can’t think of much that I would want for myself except to help others. I wish I had more to give. Well, maybe a new laptop would be nice. Ha ha! Anyway, this year we will send out something for our kids that are away. Benjamin will have presents by the tree on Christmas day. As far as me and Rosie, we don’t plan on doing anything much for each other. We will, however, be sponsoring a child. We will be doing this through an organization called Mito Wishes Upon A Star. Each year they help find sponsors for children with Mitochondrial Disease. My dear friend Christen Brawley has done an excellent job of finding sponsors and we decided to help. There is one other person that we have in mind and there could always be last minute additions and changes in plans.
The idea for this particular blog entry came as a result of a chat that I had with my friend Donna Brown. She is one of the many friends that I gained through following a special little girl named Ali. Most anyone that follows kids with rare diseases knows who Angel Ali is. Ali, of course, had Batten Disease but has since made her home in heaven along with the many others (Batten Disease really isn’t that rare). At it’s height, Ali’s page hosted 134K likes. That is a lot of people. It is not a contest to see who has the most likes on their Facebook page but there is something that I would like to point out. If a 134 thousand people are out telling all their friends about Batten Disease, that creates a lot of awareness. Not only did it create a lot of awareness but it also created a lot of friendships that have endured. There are a lot of people that I really care about whose friendship with me came about because of Ali and her mom, Donya Catlett. One such friendship is with Donna.
Donna has created a page and an organization through Facebook called Teddy’s Angels. I was so pleasantly surprised when I learned about all that she is doing in the way of spreading awareness about childhood cancer and rare diseases like Battens. She has created characters using costumes that she uses for getting the message out to others. She goes out in public places and spreads awareness to people who do not yet know. Donna gives talks to children at the schools in her area. Her husband is a truck driver and they have placed Teddy Angel’s ribbons and logos on the truck. This helps them to spread the word wherever they go! Donna has also raised money directly to give to families whose children are battling cancer. You go girl!! This Christmas she and her team have set a goal of sponsoring 85 children to receive a Christmas gift. Last time we talked, she was oh so close to achieving that goal. How cool is that! After all, Christmas is for kids and those that are like them. Donna attributes the inspiration that she received for doing all of this to following two special children. One with childhood cancer and the other with Batten Disease. The child with Batten Disease was none other than Angel Ali or Ali Vise. Ali was loved by so many people, one of which was Donna. Like so many others, she had a dream of meeting Ali in person. That dream became a reality when she, along with her husband Jeffry, attended an event put on by Ali’s mom, Donya. You can only imagine that being a very special meeting for Donna and in fact that is what she would tell me. Meeting someone who is so loved and followed by so many is a great privilege and it comes to very few. When it happens you know that you are experiencing something special and it often times can have a profound impact on you. Much of what Donna is doing is being done because of an angel that she met who had Batten Disease.
There are a very few things in the way of material objects that I would like to have as a gift. I really receive so much more by doing for others and seeing the joy that comes to those that gain from something I was able to do. My writing is really for others although I have received so much by doing so. So I want to acknowledge that like Donna, my life was changed because of Ali’s life. It has been a gift given to me. It didn’t happen on Christmas although it may be one of the best gifts that I have ever received. Ali’s image has adorned our home during every Christmas since we first became aware. I started to follow Ali in what had to be the year 2013. It was through a series of Facebook pages that I was led to Ali’s Angels. Up to that point, I didn’t know what Batten Disease was. I had heard it said by others that when it came to Donya and Ali, it only took one look and you were done. I can testify that to be the case because the same thing happened to me. Now since that time, there have been other Batten warriors and their families but it all started with Ali and her family. It was through Ali that her grandparents received the sweetest nicknames. Donald and Doris Catlett became Papa Cat and Nini Cat. I just thought that the entire family was so neat. I was taken by Ali’s plight and the sacrifices that were being made on her behalf. I read every post and made comment. Like so many others, I did my best to get to know Donya and her family on the deepest level that I could from across the country and I tried to help in every way that I could. I started writing posts on Facebook about Ali and Donya and it showed people how we felt as a family. I can remember people making comments about the posts as if to say, wow, who is this guy? The same type of feelings that I have shown in my blogs about Batten families first existed in those posts about Ali and her sweet family. It was in those original posts that I discovered that I love to write. Like Donna Brown, I felt like I needed to meet Ali and so in June of 2014 we would make the trip.
I have shared that the trip to meet Ali was made in conjunction with the opportunity to dive an underwater memorial that is dedicated to a Navy SEAL who gave his life in service to our country. His name is Adam Brown and he was from Ali’s hometown of Hot Springs Arkansas. It was actually through Adam Brown and his memorial, named Fearless Rock, that I learned about Ali and Batten Disease. That has always amazed me. My perspective and motives in life were all changed by these events. At the time we were selling a rental house. I had to plan the trip and take diving lessons while staying well during cold flu season. Everything had to go according to plan and it did. In all our years of
marriage we had never been on a long distance vacation but we were going to Hot Springs. It was Benjamin’s first and only airplane ride. We told him that he was going on the ‘bus with wings’. He did a great job and we were so proud of him. It was exciting and there are so many details that we could share. You will often hear people talking about Christmas being a magical event. In fact it is. Especially if you are a child or one of those that are like them. Meeting Ali and her family was a magical event for us and it was one of the greatest gifts that we ever could have received. It was Donya that told me that I should blog about the event. This has led to greater understanding about expressing myself through writing. It was only a lunch date but the time spent was priceless. The love that Donya had for Ali was even more evident as we met in person. Ali was flawlessly cared for and was in fact pure perfection. The conversation was rich and the memories will always be sweet. It is hard to know what impact the event had on Benjamin but it is very clear that it had a profound effect on me.
This is my Christmas blog! One of the best gifts that I have ever received is having my perspective in life changed. Coming to the realization that it is not all about me has changed me. It is so much better if we are in this world to help others. Especially if we are talking about Kids and those that are like them. Especially if we are reaching out to those that need extra attention or a source of encouragement. That is why I so enjoy being involved in the Batten community, as well as those communities that are like them. Being a servant to my son has taught me much. Being a part of his story and sharing it with you means a lot to me. I look forward to what is coming up in this blog and I’ll do it for as long as I am able. I so appreciate the families that have allowed me to write about their precious warriors. Batten Disease is not that rare, is it? I have written about a family from Newfoundland and one from South Africa. Maybe the sweetest one of them all comes from Plymouth in the UK. Greece and Turkey are the homes of two really good friends that care for wonderful warriors. My Royal Family lives in England and of course there have also been many families here in the USA that have placed their trust in me. All of their stories have been written in the blog because I have been allowed to do so. All of them are special to me. So this is my Christmas blog. It has been written at Donna Brown’s request because she is honoring my Benjamin as one of her little warriors for Teddy’s Angels! After all, he is little at heart. We have included both of our families meeting Angel Ali because her sweet life has impacted both of our lives in a very big way. I hope it makes sense to you. I have stuffed this blog like a Christmas stocking. Packing it carefully with a lot of different things. Please remember that you are important to me and please remember this…. Christmas is for kids and those that are like them. It is, however, a time for us all!
From the Lopez family
Greg, Rosie, and Benjamin
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...