June a full month.

June in our family is filled with celebration, grief, full schedules, summer routines, everyday mundane life and extraordinary moments.   

June celebration starts off with Joe’s birthday, followed by Batten Disease Awareness Day, then Peter’s birthday, then Father’s Day, then Jacob’s birthday, then our anniversary and the anniversary of my mom’s death.  With all sorts of life and ministry things sprinkled in there as well.  Wow, I’m tired just writing and reading that.  Celebration, sorrow, joy, and grief all collide and are packed into one month and sometimes one day.  

 

Having joy and sorrow side by side is a good reminder that each moment is just a moment and that it will pass.   Celebrating together as a family, laughing over the funny things the boys say and do, watching in awe as our boys grow and change, is both beautiful and sad.  Beautiful because life goes on, and sad because life goes on.  

 

Peter could be a party planner someday.  We spend lots of time leading up to his birthday discussing the theme, figuring out what games we should play, planning the schedule, and talking about the cake decorations and party decorations.  He loves his birthday week and the party.  

 

Jacob is the life of the party on a normal day.  So we had some family friends over to enjoy chocolate cake with chocolate icing and homemade chocolate ice cream.  Do you see a theme? Jacob LOVES chocolate.  Our newly minted four-year-old has lots of questions and lots of opinions, and he’s not shy to let you know about either.   He is also not a fan of change; sometimes, just changing his clothes is not something he is interested in.  

 

Recently, in a conversation about Jacob, I realized that he doesn’t know a world without Batten Disease.  Peter’s diagnosis came 6 weeks before Jacob entered our world.  I remember Jacob failing his initial hearing screening and my postpartum hormone brain thought through tears, how I was going to have a blind son and a deaf son.  Peter has never seen Jacob.  Jacob has never known the Peter we knew before we knew about Batten Disease.  Jacob had also never known his parents before Batten Disease.   We try hard to let Jacob be his own person, but we also know that Batten Disease has changed our family and us.  

 

As I have journeyed through grief over the loss of my mom, a nagging thought at the back of my head is that the death of a parent is expected.  In a recent conversation with a friend who had also lost their mom this year, I was reminded that while it is normal and expected, it was not expected this soon.  But the thought of slowly losing my son and being able to do next to nothing about it, that is not natural or normal.  

 

And yet time goes on; Miglustat seems to continue to press pause.  This summer, in between everything else going on, Peter has been working on learning new assistive technology and learning new skills with his iPad.  We are trying to help him become more independent.  I would love to one day feel the ache of missing him because he has gone off to college or started living on his own, instead of the ache of missing him because he is no longer here at all.  

 

We live straddling the here and now, while planning for the unknown future and hoping that the future holds lots of time with both our boys.  This often helps us to focus on celebrating the everyday mundane moments and choosing joy.  During the times that it doesn’t, we lean on Christ to continue to find hope and choose joy even in the dark and unknown times.  

 

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.  

Seasons Change

 Seasons change, seasons come and then they go.  Spring is springing here in Ohio.  Ahh-choo.  Colors are popping up everywhere.  A fine green dust covers everything between the rain showers.  Watching new life emerge on the trees, hearing the birds song through the open windows, reminds me that we did it.  We survived another winter.  As we gear up for summer and all that means for our family, I have to remind myself that where we are now is just a season and soon it to will pass.   

I have been a bit hesitant to write it down (i.e. type it out) because even though I don’t really believe in some magical power that changes things if you say it or write it, I am afraid putting it out there will somehow jinx it.   How is that for a run on sentence?  

 

Peter is doing good, he is doing great even.  He is doing great at school.  He is growing by leaps and bounds in his reading ability.  In his recent testing he did well and continues to learn new skills, facts, and ways of doing things.  He is loving being a part of both the Ashland University and the Special Olympics Track and Field team.  Over our Spring Break we went back to Tennessee where we had what we call our COVID year from June of 2020 to June of 2021.  During that COVID year our lives were kind of on pause.  We had no idea what the future held in that year.  Some of the struggles we had with Peter in that year we know now were due to Batten Disease.  But at that point we had no idea it even existed.  Our focus was on returning to South Africa and then switched to focus on finding out where our new home would be.  

 

Fast forward through a few season changes, we are now finishing our 4^th year in Loudonville.  In our four years here we have welcomed a dog and Jacob into our lives as well as numerous friends.   We have added a number of diagnosis to our myChart lists.  We have added a family moto of Choose Joy into the mix as well.  Sometimes life is great, fun, and exciting and sometimes it is heavy, hard and exhausting.  

 

There was some time in the fall where we all struggled.  Peter was not sleeping well, he was dysregulated more than he was regulated, he was having trouble controlling his emotions and his body, there were lots of tears and frustrations, things were hard.  After a bit of this we realized this was not going away and I began mentally preparing that this was our new normal.  Around that time we reached out to his team at school and at Nationwide to involve them in the process of how do we adjust to this new normal.  We changed some things, tried some things, the school team changed some things and tried some things and Peter began to do better.  We also made some changes in his before bed routine and a few other adjustments and his sleep improved, which meant our sleep improved.  That in and of itself was a game changer for everyone.   I am relived to write that where he was this fall was not his new normal.  He has been doing so much better, he is able to ask for help or ask for a break, he is being creative and thinking of new ideas, he has returned to being kind and empathic (for the most part…he is still a 9 year old boy J ).  We are very thankful that where he was in the Fall was not our new normal.  In fact our now new normal find us trying to help him be more independent in his daily activities, to do more to further his skills in academics and athletics.  For that we are grateful.  There are still struggles don’t get me wrong, however struggles are a part of life.  It is up to us to Choose Joy when things are going well and when things are a struggle.  

 

So today whatever season you are in remember this to will pass and change.  If the season is good be thankful and soak it up, if the season is hard look for ways to choose joy and know that this will pass.  

Perspective

I have heard it said, “It is all a matter of perspective.” As we walk this journey, I am                                     realizing how true that statement is.  

The day after Christmas we were blessed with the opportunity to return to Disney World, specifically Magic Kingdom, thanks to a Christmas gift from Joe’s parents.  Thanks to the DAS (a disability pass that Peter qualified for) we were able to do all that Peter wanted to do plus more.  Peter rode Big Thunder Mountain four times which is his absolute favorite ride.  The next day we went back to Give Kids the World Village where we stayed during Peter’s Wish Trip. 

 

Our day at Disney was a fun-filled, jump-for-joy, action-packed kind of day with a lot of walking in between (around 22,000 steps) with over 100,000 other people.  Our day at Give Kids the World was slower-paced and a lot less crowded. 

 

At Magic Kingdom, nick named the Happiest Place on Earth, we saw lots of families, and people who were mostly abled-bodied and in pursuit of the next ride, show, meal, or souvenir.    At Give Kids the World, we saw Peter’s star, which he decorated and placed on his wish trip 2 years ago.  We connected with several other Alumni Families while we were there.   We connected with Luke, his aunt, and grandma.  Luke’s cousin passed away in May from brain cancer at just 16 years old.   They chose to honor his memory by volunteering at Give Kids the World Village and going back to some of the places that he loved from his wish trip.  We saw other families some, like us who were back with their wish kid, others, like Luke’s family, were missing their wish kid. 

 

Having the two days back to back was an interesting dose of reality and perspective.  For some, the greatest worries at Magic Kingdom were figuring out the lightning lane and getting the best spot for the fireworks.     At Give Kids the World Village your very presence at the Village meant your child had a life-altering, life-limiting, or terminal diagnosis.   The joy and happiness provided at the Village or by the granted Wish comes at a cost and it is a high one.

 

Childhood is supposed to be a launch into the future full of possibilities.  For Peter and others with life-limiting or terminal diseases childhood may be all that there is.  The reality is that I will probably have to plan my oldest son's funeral while his current 4th-grade classmates are planning for college or weddings. 

 

Putting things in perspective allows you to look up and around at others on the journey.   The journey we are walking is not an easy one, but it could be harder.  It could also be easier and in some ways, things are easier right now.   Yes, things could be better, we could have a fully sighted son without Batten disease, but that is not our story.  Things also could be worse, we currently are able to make memories with Peter, we can communicate with him, and he is with us, he does not currently have to have lots of medical interventions and treatments. Looking around the village, I was reminded once again to Choose Joy for the moments we have.  To be intentional about making the memories we can make.   I was reminded to live in the moment and trying to make the most of each one.  Today Choose Joy!  

A little off

 The Christmas Tree is up well before Christmas. Peter LOVES Christmas.  We told Peter that we wouldn’t start decorating for Christmas until after Halloween.  On Halloween day Peter was asking when can we take down the Fall decorations.  At first, I had no clue why.  Then we remembered that Halloween was when we told him that we could start to put up Christmas decorations.  

The Christmas Tree in the living room is not where it should be.  We have a beautiful bay window that everyone driving by can see into.  The Christmas Tree should be in the center of that window.  But the toddler and the dog like standing in the middle of that window to watch the traffic go by or bark at the mailman.  It is easier for Peter if the tree is tucked away and not in main area or high traffic area.  So, the tree is up early and is also not positioned where it would look the best.   

 

Sometimes life happens early, sometimes things aren’t quite in the right spot.  My 9-year-old is losing his memory.  He is experiencing some of the symptoms of childhood dementia that come with his Battens diagnosis.  He also struggles with sensory and processing issues.  On some things he is getting too much input and in other areas not enough. 

 

Memory is a tricky thing when you love someone with dementia.  Peter’s childhood dementia and sensory issues have been the things we have struggled with the most over the last few months.  The struggles don’t always look the same, the behaviors aren’t always easily traced back to this one thing, but the struggle is real and often results in tears, frustration and even anger.   

 

Sometimes it looks like being upset that we can’t do the thing he wants or finish something right now and we are able to get at the heart of the issue; a lot of time it is because he is afraid he is going to forget what he was doing or wants to do.  Sometime it is tears or anger because he can’t remember a concept he knew or can’t finish a task because he doesn’t remember how or what his plan was.  Other times it is digging in his heels and refusing to do anything other than what he wants at that moment.  Other times he struggles to control his body or to deal with sensations or the way things feel or taste.  He is on the move almost non-stop.  Sometimes it is normal 9-year-old boy energy and other times it is clear that he is searching or needing something that we don’t know what it is or how to help. 

 

After trying to handle things on our own for a bit we reached out to his Battens team at Nationwide to see about possible help and advice.  From those conversations and our own research, we are going to be trying a few things to see if they will help.  One is a new therapy type that other Battens families have found success with, ABA therapy. The other is working with Occupational Therapy to understand what his sensory needs are and how we can help to meet those in both the home and school setting.  We are hopeful these new tools and therapies will help Peter to be more regulated.  That will (hopefully) in turn, make for a happier and less emotional boy who can focus on playing with his brother or whatever project he wants to do instead trying to deal with big emotions.   The hope is also that this will help the sleep issues that are ever present.   

 

Thanksgiving is next week, and Advent starts right after.  In this season of thankfulness and of waiting and preparing for the birth of the Christ child, we continue to hope and to be thankful.   Even though the frustrations are many and at time overwhelming, there are still many moments of laughter, joy, happiness, and family memories.  We are thankful for TEAM PETER and for everyone who joins us in helping Peter live his best life for as long as possible.  We are thankful for our family and jobs/ministries.  We are hopeful that these new therapies and interventions will be helpful.  We continue to hope for a scientific breakthrough to help Peter and all those who have Battens.  Ultimately, we have our hope in Christ, who allows us to walk this journey with grace, hope and even joy.  

 

It you are still reading - Choose Joy no matter the circumstances.   

Choosing Joy....continued

It is our family’s mantra.  It is printed on the Team Peter bracelets we wear.  But what does it look like to choose joy when things are not joyful, when things are hard, when joy is the farthest thing from your mind.  I try to remind myself to choose joy in the middle of behavioral struggles with Peter.   

Much of life is about choices.  Our response to whatever is happening in front of us is a choice.  Sometimes it is easy to choose joy, other times not so much.  We are working hard to build a team around Peter that will help support him and us when he continues to decline.  We still have hope that medical science will find a breakthrough, that the medication he is currently on will slow/pause the progression, that God will heal him.  However, in the meantime in the day to day, we try to choose joy and do what we can to enjoy the present moment (unless it is an unpleasant moment and then we just try to get through it J ).  Sometimes choosing joy looks like getting through the current moment and hoping and trusting in the promise that joy comes in the morning.  

 

Some of the time Peter is himself, the kind but mischievous/smart and stubborn/funny and determined boy.  I will be honest I struggle as I watch my boy slip away.  He is still there and I cherish the moments that he is, when his smile reaches his eyes, when his laugh is the sound filling my ears, when he is jumping for joy, when he does the hard work and accomplishes a difficult task.  

 

There are other times when it is clear that his Batten Disease is slowly eating away the cells that help make who he is.  Times when he struggles to control his emotions, struggles to control his body, struggles to remember a concept, a word, a memory, the question he had, times that he just struggles.  Sometimes we are able to easily distract or regulate him.  Other times we are not.  Sometimes when he digs in it is something insignificant that we can easily navigate around other times it is not.  Sometimes it happens in the privacy of our home at time when we are not on a schedule; other times it happens when he wakes up in the early morning hours or in a public place or when we have somewhere to be.   

 

As a part of Peter’s team we have  video meetings with a Nationwide Children’s Psychologist.  She is for Peter but she is meeting with us because we are the ones day to day trying to navigate Peter’s behavioral ups and downs.  Today in our meeting she mentioned something a concept called dropping the rope.  Basically when we find ourselves in a tug a war, dropping the rope and stepping away.   There are times when choosing joy looks like dropping the rope and being thankful that Joe and I are in this together and can switch out when we need to.  We also can choose joy because of the amazing support system in our families and Team Peter. 

 

Thanks for helping us Choose Joy.  Most of the time life is okay, it is manageable, there is laughter and joy.  When it is not we have our faith, we have the ability to lean into God, each other, and our support system, which helps make the not okay, manageable. 

It takes a village....

It takes a village and we are beyond grateful for ours. 

Our village, the community of Loudonville over the last week has literally cheered us on. On May 10th High School and Jr High School athletes and elementary students spontaneously ran behind Peter and Joe as they made a lap around the track. But as a friend said my eyes which were already leaking started pouring when I watched what was happening. Several days prior Peter played the drums with the Loudonville High School Band and received a standing ovation. In both occasions tears flowed and the moments were captured to be recalled on the tough days. 

 Three and a half years ago Loudonville Ohio was someplace I had never heard of. I didn’t know there was a Nazarene Church here. Nor did I know that it had the best public Library around. Or that there street fair is pretty amazing. 

 Two years and one day ago (May 12,2022) I had no idea that the CLN3 could be combined to write a death sentence for my oldest son. I knew nothing of Batten disease or that genetic, progressive, neurological , and terminal were synonyms for the disease. 

 Over the last three years Loudonville has become more than a place where I am a pastor. Loudonville has even become more than a home. Loudonville and the people that make up this community have become our people, our village, our tribe. 

 Over the last two years we have ridden the roller coaster of emotions of learning that our son has an incurable, terminal disease. Most days we have settled into choosing joy, trying to make the most of every moment all while trying to lead lives as close to normal as possible. We still butt heads over rules, attitudes, boundaries, and all the normal stuff parents and an eight year old boy disagree on. We just have the added factor of his diagnosis. How important is whatever we are butting heads over? We offer snuggles, give the choice of going to his room to snuggle his animals, we compromise a little quicker, we distract from the argument and try to find easier and happier ground. 

We have the privilege and curse of knowing his days are limited. The question mark is when will the next decline happen. The other question mark is will science and clinical trials beat that next decline or will our sweet little boy continue to slowly slip away, losing abilities, and memories as cells die off. 

As I watched the community rise to clap for my 8 year old percussionist Batten disease was the furthest thing from my mind. As elementary students raced behind Joe and Peter and cheered him on, delayed clinical trials and symptoms were not on my mind. In those moments overwhelming gratitude for the village I knew nothing about filled my heart and mind. In those moments my tribe (both those present and those I know are cheering us on from afar) lifted us up and will continue to carry us on the tough days.  

Thank you Team Peter for cheering us on. Thank you Team Peter for lifting us up. Thank you Team Peter for causing tears of joy instead of tears of grief.

 A couple of important shouts outs – Mrs. Syler his amazing para-professional. She has been a part of Team Peter before it began. She has been Peter’s eyes at school. She is his school mom. She deals with the pendulum swing of his emotions day to day while trying to get him to do his work. Mrs. Abbie has been his TVI from the beginning as well. She is a champion for Team Peter. She helped make the connection to get Peters book published. Mrs. Syler and Mrs. Abbie push Peter to work hard and give grace on the days that he can’t. There are so many others who have been a huge part of Team Peter, our church congregation, his classroom teachers, the LHS cross country team, to name a few. These and the other members of Team Peter make the hard days a little less hard and the good days even better. 

Team Peter, today and everyday choose joy.

The Librarian of Congress and Peter

Peter’s life may not look like what we thought it would, but it has been full of life, amazing adventures, and once in a lifetime experiences. Born in South Africa he had 32 stamps on his passport by the time he was 5. He has been apart of numerous Work and Witness trips (short-term missions trips). He has met Mickey Mouse on his Make-A-Wish trip. He has scored a goal in soccer. Earned a yellow belt in karate. Performed in a piano recital. He wrote a book and has hosted a book signing. Now he can add a few more experiences to the story vault. Peter’s loves story and often wants people to tell stories of memories of experiences. My aunt lives in the DC area so we took a Spring Break trip to visit. Peter’s book was accepted to be a part of the Library of Congress. During our trip we thought it would be cool for Peter to visit the Library of Congress. During our visit we not only got to see his book, but were also able to see one of the reading rooms, see a small portion of the massive card catalog at the Library of Congress. Peter was able to meet leaders from the National Library Services for the Blind (NLS). One of them being a young man who is blind and who works in their music department. Peter also had the honor of meeting The Librarian for the Library of Congress, Dr Hayden, in the ceremonial room. She signed his brailled copy of his library record and read his book with him. She also encouraged him to continuing writing and to find ways to make it a series of books. We also learned that Peter is likely the youngest author to have a book in the Library of Congress. Peter’s life has been and will continue to be full. Full of life, love, laughter, and stories. If and when Battens continues to take away his abilities we will be able to remind him of the stories of the amazing experiences that have filled his life and all of the people that love him and have supported him. To be honest when Peter first had the idea of writing a book we never imagined that it would lead to meeting the Librarian of Congress. We also never imagined that Peters book would be a source of inspiration, courage, and hope for others who are blind or disabled that we have been told that it is. Another lesson learned from my courageous 8 year old. Follow your dreams you never know where they may lead. The years that he will live may not be long but his days will be full of love and adventure.

Rare Disease Day 2024

Today is Rare Disease Day.  A day when we celebrate and call attention to those who have been diagnosed with a Rare Disease.  If I am honest two years ago I would have wondered why a day for that why not just a disease day.  Now almost two years into our journey with Battens Disease I understand the importance of it. We bring attention to the Rare Diseases because they are Rare and therefore not as widely known or understood which means that there are less people pushing for a treatment or cure or even that have a basic understanding of it.  It also means that there are less people to fund and do the research for a treatment or cure, less people who would need the treatment or cure and therefore less money available to fund the research. 

Supporting our stripes with our
Rare Disease Warrior 

 

The FDA does not make easy it for drugs to make it to the market and the guidelines for drug testing  for children is even more stringent.   Without thinking too hard I can tell of you numerous drug trials I have heard about in the last 2 years that showed promise or had proven results in treating one of the various forms of Battens Disease but the research or the trial was stopped or paused due to lack of funding or due to the pharmaceutical company changing direction.  One of those being the trial Peter was supposed to be starting at the end of March.  We do not know exactly what happened only that the trial has been delayed.  For how long we don’t know.  Will the trial still happen, we don’t know.  

 

The time it takes for a drug to go from an experimental drug to available at the  pharmacy can be 10 – 15 years.  And while we do not focus on this fact, the reality is we may not have 10-15 more years with Peter.   There are protocols that exist to speed up the process or to change some of the requirements but for reasons unknown to me those protocols and or changes are not being consider when it comes to treatments and cures to rare juvenile disease.  Time is not on our side.  I have no idea how quickly Peters cells are dying off but I know that it is happening and it heart breaking that I cannot do anything about it. 

 

Even more heart breaking and frustrating is that there is a drug already out there that has been proven to slow the progression in those with CLN3 .  It is a drug that is already approved for treatment of another disease. But it has not been approved for Battens Disease.  So for us to access it off label for Peter it would cost over $15,000 A MONTH! 

This is just a small taste of why Rare Disease is important.  Why advocacy is important.  It is important to  focus on hope and making the most of each moment, it is also important to bring to light where change needs to take place.   It is important to shed to light on why Rare Disease exists.