Dear Batten Disease

 Dear Batten Disease CLN3,

Four years ago, on May 12, 2022, we heard your name uttered for the first time. Our firstborn son was diagnosed with a disease we had never heard of before. A diagnosis that would rock our world, that would change our lives and our thoughts, plans, and dreams about the future. My husband and I had no idea that we were both carriers of a deadly neurological disease that would slowly take abilities away from our son. Wewere seated in a specialist office after a morning full of eye tests then we were handed some papers on what Batten Disease was. The sympathetic look in the doctor's eyes as he told us he was sorry, told me that the news wasn’t good, that we were dealing with more than just rapid vision loss. Basically, we were handed a diagnosis with no hope.

A diagnosis that was going to take away not just our son’s vision but would slowly take away his ability to walk, talk, eat, and finally breathe.

At the time, there was literally nothing we could do. There were no treatments and no cure. We were supposed to make the most of every moment. Further, we were encouraged to make as many memories as possible and work to make dreams come true because of the progressive nature of the disease. We have tried our best to do that. We have filled the past four years with ordinary and extraordinary memories, with joy, laughter, tears, and frustration. Along the way, Team Peter was formed, and Choose Joy became our family’s motto.

Here we are 4 years later, after we first learned you exist. Peter has issues, but he continues to set goals and achieve them with leaps for joy. He has written and published two books, he has learned to snow ski, he scored a goal in soccer, he won best in show for his Lego at the Loudonville Fair, he participates in the Special Olympics in running and throwing, and he has made huge strides in learning to read and write braille.

Even while you, Batten Disease, try to slowly take his memories and abilities away from
him. We have had some really rough patches. We have days where there are tears of
sorrow, tears of frustration, more questions than answers, and oh, the sleepless nights.
However, with the help of some trained professionals, some changes in routine, shifts in
perspective, a drug called Miglustat, and so many prayers and grace, Peter is doing well.
Now Peter is not cured of you, we know that. We still have checkups every six months
with a team of doctors and specialists, usually that appointment comes with blood work
and orders for an MRI or a 24-hour EEG. He continues to struggle with his memory, both
long-term and short-term, which causes frustration and anxiety; at times, he struggles to
find words or remember concepts he has learned, or sometimes what he was working on
on. We do not know how long the Miglustat pause will last. But we do know that God
will be walking with us no matter what tomorrow holds. And we know that Team Peter
will keep standing by us and supporting us. And we know that Peter will keep jumping
for joy for as long as possible.

Batten Disease, you tried to wreck our world, but you did not. We are still here, and we 

are still choosing joy. You tried to isolate us, but Team Peter stepped in and supported
us, prayed for us, cried with us, celebrated with us, advocated for us, and continues to
walk with us through the highs and lows. Batten Disease, you tried to write our story,
tried to control it. Peter is going to write his own story. Sure, you will have a part in it,
but you will not have the whole story.

I am reading the Bible story of Joseph to Peter at bedtime currently. We are almost at 

the part where Joseph says to his brothers; “You intended to harm me, but God
intended it for good.” Genesis 50:20 Batten Disease you tried to take everything from
Peter, you wanted to harm him, take everything from him, but you cannot take his joy,
not today.

Batten Disease, you have wreaked so many children and families, and you continue to

wreak havoc on them. But it seems like the tides are turning, and there is promising
research that hopefully one day soon, families receiving a Batten diagnosis will at the
same time, be given treatment options, not a death sentence.

Today and every day possible, we will keep choosing joy. We will not allow you to write
our story.

Sincerely,
Peter’s mom
P.S. Thanks for helping us change our perspective. May 12th, 2026, Peter hosted his
second book signing. And we will do everything we can to help him to keep achieving

his dreams.

A letter to heaven

To my mom on Mother’s Day, 

 Mom, it has been just shy of a year since we said our earthly goodbyes. In some ways, it seems like yesterday. I still occasionally reach for my phone to tell you about some silly thing Jacob or Peter did. Jacob still asks where you are and that he misses you. Jacob was grandmas boy, your little man. We have almost used all the things in your freezer, except for the cubed ham and cheese. I think we have one more Bath & Body Works soap to use. A question came up recently before my brain remembered I thought I will ask mom… 

We miss you, we miss all the little and big ways you cared for us, supported us, loved us, and prayed for us. 

 Dad is doing okay. He is finding his new rhythms and routines. He misses your cooking and the many ways you cared for him and loved him. He only uses the microwave or the grill to cook. We make sure to load up with leftovers for him to freeze and eat when he needs them. He has a flip phone now…it still frustrates him. He has a one-person camper that he has enjoyed getting set up just like he wants it. He is quieter now, but he is figuring out how to be himself without you. Dad kept your phone and sometimes calls or messages us Ray or I. Neither of us can change the name in our phone. The other day I was trying to reach dad and called your phone, I didn’t hang up before it went to voicemail and hearing your voice was both a punch to the gut and soothing to hear. 

 Our boys are another year older. We have figured out how to do life and ministry without you, but it is not always easy. I knew you and dad made our lives easier but didn’t realize how much. Jacob has enjoyed preschool but given the option I know he would choose grandma preschool. This week, was going to be a full week but then Jacob got sick and we had to shift things around. It made me miss you more. 

 Peter wrote another book. We will miss you at his book signing. He competed in the Regional Special Olympics and got silver and bronze. He continues to remain stable with only small regression, for that we are so grateful. He misses making muffins and cookies with you. He misses staying the night at your house and enjoying cinnamon rolls in the morning. He is getting so tall, and the man he might become is beginning to emerge. He got all A’s on his report card several times this year. He continues to work hard in life and jumps for joy. 

 Jacob is potty trained, he can count to ten, and he is getting better at knowing the letters of his name. He loves hanging up the pictures and crafts he worked on. He is still the very best at pushing my buttons and continues to do things his own way. He still loves going to Grandpas house and going to the basement. He still picks dandelions for Grandpa. His end-of-year preschool program is this Friday. You would be proud of him. He still ask for you and continues to ask about heaven.

Mother’s Day will be strange without you. Celebrating Mother’s Day without you doesn’t seem right. Mother’s Day 2025 was the last holiday we celebrated together. You taught me how to be a mom, how to point your children to Jesus, how to serve your family and the church. I am who I am in part because of you. Without you I would not be me. You are not forgotten, you are loved, you are missed, and you live on in the hearts and memories of those who loved you and were loved by you. 

 I understand longing for heaven in a different way now. I look forward to being with you again. But at the same time I want to see my boys grow up. I am sorry for the times I didn’t listen or got impatient with a story. 

 I love you and I miss you. Happy Mother’s Day I am sure the flowers on the streets of gold are better than anything we could have given you. 

 Forever your daughter.

Resources for Church

I am a pastor of a Nazarene church in rural Ohio. We are a multigenretaional church who wants to help people connect with God, each other, and with our community. I am always on the lookout for resources that are adaptable for our congregations needs. Godverse is a resource that we have used for skits and they have some Easter skits that they are making available. Check them out and see if one would work for your congregation. https://godsverse.org/

Goals

The New Year always brings a time of reflection on the year that has passed and dreaming and planning for the year to come. 

 

I don’t typically make New Year’s Resolutions; I try not to make promises I can’t keep or set goals that are not reachable.  Goals/resolutions like losing weight, being more organized, being late less, and finding a hobby are good goals/resolutions.  But I have been on enough trips around the sun to know that the motivation for making those things happen won’t last the month, maybe not even the week. 

 

The New Year is not the only thing that has me thinking about goals and the future.  It is time for Peter’s annual IEP again.  For those of you not in the disability or education world, IEP stands for Individualized Education Plan.   It is a way the school districts help to make sure Peter’s needs are met and that education is accessible to him.  Every year we review the plan and the needs of Peter and make plans for the year to come.  We have an amazing team at his school, some of whom have been with him since he first started going blind.  

 

Many of the questions are about Peter’s strengths and weaknesses and needs for the next school year.  I really struggled to answer the question about his long-term goals.  Peter has no idea that Batten Disease is terminal.  My hope is that he does not know that it is terminal until they have found a lasting treatment or cure.  We talk about what he is going to be when he grows up.  If you are wondering, he plans on being a detective, scientist, construction worker, author, electric guitar player, and engineer.  He is only 10, so he has no concept that he probably can’t really “be” all of those things or at least not all of them at the same time.   I have no desire to tell him any different. 

 

When I read the question, what are our (his parents') long-term goals for Peter?  It seems cruel to write to be alive.  But sometimes I struggle with how to think about the future with Peter.  On the one hand, I want to think about knowing adult Peter.  On the other, it hurts, and it is scary, and it feels cruel.  Peter is currently on a medication that seems to be pressing pause on the progression of his Batten Disease.  Basically (as I understand it), the medicine is clearing away the cellular waste that his body doesn’t deal wit,h and that waste is what kills cells/causes disease progression.  So clearing some of that waste is helping to prevent cell death, which means less progression.  We are so thankful for the pause that it is giving us.  He has remained relatively stable for over a year. 

 

The tricky part is that we do not know how long the pause will last.  We do not know if and when the disease will start progressing again.  Nor do we know if that progression will come in the form of a sharp drop off.   We do not know if it will help to prevent seizures.  Because the drug is new in treating Batten Disease CLN3, they do not know how it affects disease progression in someone who starts taking it at a younger age (9 in Peters case). Even while I am writing this, I feel guilty because at least he has access to a treatment. There are so many other families fighting battles against various forms of Batten disease and other life-limiting/life-altering diseases and diagnoses that do not have access to a treatment.  For others, the only available treatment is invasive, life-altering, time-consuming, and/or incredibly expensive. 

 

Most days we/I can stay focused on trying to choose joy, trying to make memories but also raise kind, helpful, little humans, for as we are blessed to be together.  Other days, the grief of what we have lost and could lose can be a heavy load.  On those days, I am thankful for a God who is with us, for all those who make up Team Peter who help us carry the load, and for two boys who find reasons to find joy in simple things and who help us to do the same. 

 

If you are still reading my ramblings…my goal for the next year and for Peter long-term is a life, a joyful and fulfilling life. 

Not the life we imagined.....

 Not the life we imagined.....
I remember in the years between high school and meeting Joe, wondering if I would ever
get married or if I would ever have children. The life we live now is far from the fairy tale I
daydreamed about. And yet it is what I spent years praying for and wishing for.

I am married to a man who is my best friend, an amazing father, husband, and Christ-
follower. I have two boys who love me, who daily teach me about patience, grace,
forgiveness, faith, and adventures. Two boys who overwhelm me with love and, at times, 
frustration, sometimes within seconds of each other. I am privileged to pastor a church
that loves me and my family. Together, we are all seeking to be more Christ-like and to
do what God is calling us to. I live in a rural town that has grafted us in, even though we
are transplants with no connections. I have been privileged to be adopted into and able
to build a village around us that loves us well. We get to journey through the everyday
and the valleys and mountaintops of life, marriage, ministry, and parenting.

When you step back and look at the larger picture, we are blessed beyond measure.
When you zoom in, there are some blemishes on the picture-perfect family. My mom is
now only present in memories, pictures, traditions, and in the legacy she left behind.
My oldest son is blind. A disability that is visible with his ever-present sidekick, his white
cane, “Marshmallow.” But the invisible cell death is happening due to his Batten CLN3
Disease is the diagnosis that is harder to grapple with.

Someone recently asked if Peter attended the same preschool as Jacob is currently
attending. I said no, Peter attended preschool in South Africa, and was born there.
Their reaction was one of disbelief. Sometimes mine is too. Often, I forget about our
lives as missionaries, not intentionally, but it all seems so far removed from the life we
live now.

Recently, we sold our camper. We originally bought it to keep a promise we made to
Peter, when we sold our camper in South Africa. The promise was that we would getanother camper and keep making memories in our new home, wherever it was in the
US. The promise was made before we even knew our current hometown existed. A
promise made during our month in South Africa, packing up and saying goodbye to the
life we lived before the global pandemic changed our plans. Little did we know that our
COVID year (as we call it) would be a year of preparation for the journey to come.
Our family has fond memories of times away at our camper in South Africa. It was an
hour away from our home in the suburbs of Jo’berg. The place where we parked our
caravan had a pool, a trampoline, they sold ice cream, there was a river to hike along,
and there were even monkeys. Peter rode his bike there, flew his kite, even got to ride a
camel. Our friends came out and visited us, and we were able to unplug from our
missionary lives and relax.
Our 1986 camper in Ohio was in our price range and at a campground that reminded us
of our South African campground. We bought it with dreams of times away and
memories made in mind. Our purchase in October of 2021 found Peter beginning to
lose his vision, but no idea of his larger diagnosis. In May of the following year, a tree
crashed into our camper and into our lives. Peter was diagnosed with Batten CLN3, our son had a life expectancy of 20s, and he would lose abilities he had gained. Our family was
also growing; I was 7 months pregnant with Jacob. Our life was not what we had pictured; it
was so much more and so much harder than we could have ever imagined. But there is
also beauty in the hard. And there is freedom in the reminder from Peter and from my
mom’s death that death is a part of life.   And a reminder to live the life, the moment, in
front of you to the fullest measure. Do not live in the dream of what you thought life
would be, live the life in the moment you are in. Make the most of the moment you are
in. Sometimes the moment will be the hardest moment you've ever lived through. Some
moments will be so beautiful you struggle to describe them. Other moments will be
ordinary and mundane, but no less holy. Whatever moment you find yourself in, God is
with you, He loves you, and He is journeying with you. Make the most of the moment
you are in and look for ways to choose joy. You never know when the people who are a
part of your moments will no longer be with you. Don’t long for the life you pictured in
your daydreams…live the life you have.

If life were a symphony....

If our lives were a symphony, this part of our lives would be kind of chaotic and a little heavy.   Maybe it is even the part before the orchestra starts and all the instruments are getting ready and playing to loosen up and get in tune.  It sounds a bit overwhelming and chaotic but it is all forgotten once the first piece starts.  

 

Right now, there are times when our lives feel a bit overwhelming and a little chaotic.  Our summer was very full.  Some of the things were really good: camps, activities, laughter, adventures, and trips.  Others not so good: hospitals, cancer, hospice, sadness, questions, and death.   There have been wonderful memories as well as not-so-wonderful memories.  But as my mom used to say, “That’s life.”  

 

Speaking of life, it keeps on rolling along.  Peter is back in school and seems to be adjusting well to 5^th grade.  His medication seems to be doing what we hoped, that is, pausing the progression of the disease.  We do not know how long the pause will hold, but we are thankful for it.  We are working on helping him be more independent while also helping him understand that his actions, attitudes, and choices affect others.  Jacob is exhibiting all the fun and not-so-fun things of being three.  On the fun side, he plays hard, laughs hard, and can be quick at learning when it is something he wants to learn.  On the not-so-fun side, he can be opinionated, stubborn, and a little (sometimes a lot) irrational.   I have a picture I sent to Joe of Jacob red-faced angry, crying, along with the caption….reason 5,563 Jacob is angry at me today…I wiped his nose.  I know, I know, he is three.  I also know that this stage will pass; I am just hopeful it is not like a kidney stone.  I mentioned to Joe the other night that right now, Jacob is more difficult to parent than Peter.  We are hopeful that now that school is back in session and our routines have returned that things will even out some.  He also starts preschool in September and is excited about that (so are we...but for slightly different reasons.)  

 

 When we look back on this time in a few years, it is likely that we won’t remember the chaos.  We will remember the grief.  Pictures will help us remember the events.  Thankfully, the overwhelming feelings will fade from memory.  Just like the tuning of the instruments before the concert is forgotten once the instruments are playing the concert.   Until the chaos fades or until we are able to see around the chaos, we continue to try and choose joy and live life with grace and patience.  

 

Whatever the chaos in your life, know there is a God who brings order to chaos and walks with you through the storms of life.  A God who takes the noise of our lives and turns it into a beautiful symphony.  

Moments

Moments 

 

Over the last two months, I have spent more time in or traveling to hospitals than I would have liked.  Instead of being the one offering words of comfort and hope, our family has been on the receiving end of the words of comfort, the acts of service, and the prayers.  God has been present with us every step of the way.  I am thankful for our church family(s) and community(s) who have loved on my dad, brother and his family, and me and my guys in the midst of losing my mom.  

 

My mom went into a local hospital on June 8^th, and she was transferred to a larger hospital on June 13^th.  During her stay in the hospital she endured numerous poks and prodes, countless x-rays, CT scans, MRIs, had a colonoscopy, a stint placed, had a drain put into her lung and had that lung drained numerous times, had an NG tube inserted and reinserted, and was on varying levels of oxygen during her time in the hospital.  On June 25^th, she transferred to hospice, and the focus was on keeping her comfortable until she passed.  She breathed her last on June 29^th.  We had her funeral on July 5^th, and on July 6^th, we went to visit Joe’s family.  Jacob had a seizure on July 6^th after we arrived in Pennsylvania.  One ambulance ride and ER visit late,r we learned Jacob’s seizure was most likely a febrile seizure and that he had tested positive for 3 different viruses.  Thankfully, he bounced back well and had no other seizures.  Apparently, febrile seizures are common; hopefully, we are done with those now.  I think our medical bingo card is full.  

 

Last week, Peter and I were back at the hospital for his yearly overnight EEG.  He has 27 leads attached to his head, face, and upper chest.  The process of getting them on and off is the worst and smelliest part of the process (second place is getting them removed, which he also hates).  Then we hang out in a hospital room.  Peter gets anxious about procedures and tests.  He asked why he had to keep having these tests and if this was the last one.  I held his hand as he cried crocodile tears and reminded him of how brave he was, and tried to count down until the yucky part of the procedure was done.  I’d give anything to swap places with him or to somehow stop the pain.  But I couldn’t stop the pain or the procedures for my mom, and I can’t for my boys either.  

 

Recently, I took Jacob to the dentist.  As we were driving, he asked where the hospital was.  His sweet three-year-old brain is trying to figure out why grandma, who was such a big part of his life, is no longer around.  The only things he understands about heaven are that Jesus and grandma are there and that it is far, far away.  

Grief, sorrow, joy, laughter, worry, and peace have been intermixed this summer.  Amid all the grief and hospital time there has also been sweet moments of joy (celebrating all three of my guys birthdays, the Peter competing in the Ohio Special Olympics, spending time with extended family, Joni and Friends Camp, Jacob taking swim lessons and loving it), moments of just ordinary life (eating meals together, doing laundry, walking the dog, sitting on the deck) and moments of frustration and exhaustion  (potty training Jacob, things not going as planned, missing mom and the many ways she was an amazing part of our team).  All of these moments mix together to form our lives.  There are many things out of our control, but how we respond to the moments determines a great deal in life.   

 

I don’t want bitterness to creep into my heart.  It doesn’t help anyone, it doesn’t help me process my grief, it doesn’t take the rough edges off of life; in fact, it adds more.  I also don’t want to wallow in grief, anger, and sadness.  But there has to be room for those emotions and places and spaces to deal with those.  In the midst of the hard, there are echoes of joy, of grace, and of blessing.  A number of people gave us wind chimes after Mom's passing.  We have them hanging on our back deck.  Whenever we hear them, we say hi to Grandma.  I try to be thankful for the memories and times we had together.  The other day, Jacob climbed so he could make the wind chimes ring and said, “Hi Grandma, I love you.” I said me too, buddy me too.  He then transitioned back to playing.  I think he is on to something.  When the moments of sadness and missing her come, feel them, lean into them, and then continue on living.