Make A Wish

 Make a wish.  

 

We wish on a star, we make a wish when we blow out the birthday candles, we make a wish as blow on a dandelion but I never thought I would be helping my son make a wish because of a medical diagnosis.  

 

We have been overwhelmed and so blessed by the out pouring of support we have received from our family, friends, and our local community since sharing about Peter’s diagnosis.  The tree house is built and has already brought hours of fun and laughter to Peter and his friends.  He loves showing his friends all the different elements of it and having lots of fun on it.  And we love the smile it brings to his face and the joy it brings to his heart.  

 

We have also been granted a wish through the Make A Wish foundation.  His doctors encouraged us to go ahead with the trip now while Peter is doing pretty well and can better enjo
y the trip.  Make a Wish actually has a Workbook that you do with your child to help them choose a wish.  The wishes are from one of four categories; something you do, something you have, something you want to be; something you want to give.  As we talked about we decided to let him choose something from each category and we would see if we could make all of the wishes come true over the next year or so.  

 

He wanted to have a treehouse and thanks to hard work of Joe, my dad, and several other amazing volunteers and your support he has a tree house.   He wanted to be an author and over the last little bit we have been working on a book called “The Adventures of Peter and Marshmallow.”  Marshmallow is what he named his white cane.  He wanted to go to Disney World and through the Make a Wish Foundation we are going to do just that.  

 

In January, we will spend a week in Orlando, FL at the Give Kids the World Village.  We will be able to go to the Disney Parks and Universal as well as enjoy all of the fun activities at the Give Kids the World Village.   We are looking forward to making some fun memories together and enjoying a care free week.  

   

I never dreamed that my family would be a Make a wish family, but we are that grateful we have been given this opportunity.  We are also grateful for organizations like Make A Wish that give opportunities for family with life threatening and terminal illnesses to make memories together as a family.  With all the heaviness that comes along with an illness it is nice to focus on happy things and memories.  

 

We did a treasure hunt with clues for Peter to find the Braille letters to spell Mickey to tell him about his trip.  Obviously, he is very excited and so are we.  Thanks for praying with us that we will have a wonderful trip and
make lots of fun memories together.  

 

If you missed our last blog post and are wondering what is going on please read our Blog post grace for the moment to better understand what is happening in life right now.  

Grace for the Moment

 Sometimes you get answers but they are not the answers you were hoping for.  

In our last blog we requested prayer that we would find out some answers to the cause of Peter’s blindness.  

 

Well we did find out an answer but it is not something we had ever heard of and wanted to know about.  

 

Peter has been diagnosed with a rare genetic degenerative neurological disease called Battens disease.  Basically his cells don’t deal with waste which causes the waste to build up and kill off the cells.  Vision loss is one of the first symptoms and followed by behavioral issues and cognitive decline.  Peter may also experience seizures in the next few years.  The disease will progress further but there is no set time line as each child is affected differently.  Eventually the disease will progress to where Peter is unable to walk, talk, or eat on his own.  Unfortunately Batten disease has no cure and unless a cure or treatment is found Peter will pass away from it in his late teens to his twenties.  

 

We are heartbroken but also trying to do everything that we can to enjoy the good moments, days, months and hopefully years we have with Peter before his health declines further.  Peter knows he has something called batten disease and that it caused his blindness and such.  He does not know anything about what may come and we don’t want him too.  We are asking that you do not talk to him or other children about the things to come.  As much as he can be we want him to be a normal 7 year old for as long as possible.  We are trying to do everything we can to be intentional about making the most of the good times we have together while Peter is still in good health.  We are trying to live in the present moment and not get overwhelmed or concerned about what the future may be.  

 

We know that God can and will heal him.  It may be through a miracle and God’s healing touch, it may through a miracle of a scientific break though, or it may be through the miracle of the ultimate healing received in heaven.  

 

We have shared the news with some of our circle.  This weekend we shared the news with our congregation.  And now we are sharing with our Facebook Framily.  Many of you have supported us so much during our journeys here in the US and South Africa and now in Ohio. However, we are asking that you don’t share or discuss this news with children as we would like Peter to be as normal as possible for as long as possible.  

 

As we have shared this news many have asked what can we do to help.  Right now we are doing okay.  We will likely need more support as this progresses but we also know it is hard to not be able to do anything.   So we have tried to think about an answer.  

 

• The first answer is prayer.  Pray for us that we would have patience, grace and strength for the moment in front us.  Some days are great and wonderful and filled with laughter and fun.  Other days are filled with struggles, tears, and frustration. Pray that we would be able to soak in the good days and have grace for the difficult days and times.  
• Second We are trying to be intentional to make the most of the healthy time we have with Peter.  So Peter is involved in horses, karate, and piano.  The times when he is not in school or at one his other activities you will find him playing Lego, playing soccer, doing crafts, and lately planning for his tree house.  He has big plans for a tree house and we are going to do what we can to make it happen.  So if you are local and have building materials that you are wanting to get rid please let us know.  (Picture is of the Tree House Model Joe and Peter created.) If you are not local but want to be a part send us a message and we can figure out a way for you to be involved. 
• Third, restaurant gift cards or gas gift cards.  I will be honest there are times that this is all very exhausting and figuring out dinner sometimes just seems like an overwhelming task.  These will be just a small way to lessen the load a bit sometimes and like a hug from our Framily to us.  
• Forth, Peter LOVES audiobooks, having books read to him, and hearing someone tell stories.  If you have the ability to record yourself reading a story or telling a story and sending it to us Peter would love that.  It only needs to be an audio file, because he wouldn’t be able to see the video anyway. J

There are blessings in the midst of the struggles. 

• As much as we don’t like the answer, it is a blessing to have an answer and to know what we are dealing with.  This allowed us to make a shift to focus on the moment and being intentional to focus on the present moment.  
• We know that our time with Peter is limited and so we know we need to make as many memories as we can while he is still healthy.  Shortly after we found out about Peter’s diagnosis the school shooting happened in Texas.  Those parents had no idea that there time with their children was limited. 
• There are only 6 Batten’s Centers in the world.  We live an hour and a half from one of them at Nationwide Children’s Clinic.  We have been seen by a team of doctors and specialist there and they are pleased with where Peter is at now.  They will walk with us the disease progresses and we are thankful.  
• Peter was diagnosed early. Only 6 months passed between Peters initial genetic testing and receiving his diagnosis.  Many families we have met, talked with, or read about go years misdiagnosed. Again this allows to focus on what is important.   
• We had Jacob tested and he is only carrier of the disease and will not be affected or have symptoms.  

We appreciate your love, prayers, and support as we walk this journey.  Please reach out if you have any questions.  

Play The Hand You've Been Dealt

 Bloom where you are planted. 

Minister where you are at. 

Play the hand you’ve been dealt. 

 

These are all different versions of the sentiment Joe and I have lived by in our years of ministry and even in our lives before we were together.  

 

The mantra has served us well and has gotten us through some tough times but also through some exciting times.  It has gotten us through the ordinary, the extraordinary, the good and the bad and the moments that were a little bit of both.  

 

As I mentioned before we are living the little bit of both right now.  My growing belly and our countdown to July is so exciting (and also a bit scary).  We are looking forward to welcoming “peanut” into our lives.  Peter is looking forward to being a big brother and has even committed to helping change diapers.  

 

At the same time, we are getting into better routines with Peter and his visual impartment.  We recently completed his IEP (individualized education plan) and he will be receiving Braille and Orientation and Mobility training in school and also some during the summer.   He now has a white cane, Peter named “marshmallow” that helps him see and navigate the world.  He has an aid that helps him throughout the day and is his eyes at school.  She has been a real blessing to our family and to Peter.  

 

We are getting used to being his eyes and learning to describe things in a way that is most helpful to him.  We narrate what we are seeing or what we what want him to understand and “see” about what is happening around him.  We are also discovering some of the parenting benefits of having a kiddo who can’t see; like we can have conversations with gestures or hide things in plain sight and he doesn’t even know it.  

 

I won’t lie some days it is exhausting.  Sometimes I get frustrated with myself and my lack of patience, or impatient with trying to give step by step instructions for something that would require no description a few months ago.  Sometimes my heart breaks at the fact that my sweet first born son may never know what his little brother looks like.  We try hard not to make everything about his diminishing (well at this point diminished) vision.  He is still a 6 year old boy with big plans for his birthday coming up.  He still has big plans for his future.  For the most part we have been able to figure out how to do the things he wants to do.  It may look different, it may take longer, but we don’t want eyes that don’t function to define him.  

We have an appointment with a Retina Specialist May 12^th.  While we are hopeful that there will be an answer, a known diagnosis, we are also trying to keep our expectations in line.  We fully know we could go through the tests and leave with no more answers than we came with.  Either way the sun will set and rise again.  Peter will still love to tell jokes and have dance parties.

 

While my blogs lately have been centered around Peter and Peanut.  I am enjoying being a pastor in a way I didn’t think I would.  Sure, there are overwhelming and stressful days.  I am learning to juggle roles and responsibilities, sometimes all the balls are in the air no problem and other times all the balls are bouncing on the ground instead of gliding through the air.  That would be true no matter what ministry I was part of or job I had.  

 

Someone recently asked us if we missed South Africa and we do but we are also enjoying settling into our home, lives and community here.  God is good even if life doesn’t look like what we thought it would.  God is good even though the future is uncertain and sometimes filled with question marks.  God is good when my sweet boy’s eyes are filled with smiles and the sound of his laughter is in the air.  God is good when tears fill his eyes and frustration colors his words.  God is good when my rainbow baby moves in my womb and God is good when pregnancy insomnia keeps me up at night.  God is good, period.  And God helps us to bloom where we are, God helps us play with what we are dealt, and minister where we are; and for that we are grateful.  

 

Until next time:  Remember, when you are a boy mom sometimes you have to learn to just roll with conversations about and sounds of burps and farts and other bodily functions, because if you do you may just hear the sound of his giggle.  

 

 

Where Joy and Sorrow Meet

 When you are a kid you think that adult life is so grand, or at least I did.  But now that I am squarely in the middle of adulthood I am realizing that life as an adult is a moments of joy and sorrow sometimes within the same moment.  

I was also under the misconception in my younger years that mountaintop moments and deep valley moments happened at some distance from each other.  That there were a number of steps between sorrow and joy.  I have learned in my adult years that is not true.  

 

Our family is currently walking a journey of joy and sorrow.  We are anxiously and excitedly waiting for the arrival of our baby in July.  Our journey to Heath party of four has been filled with unknowns, waiting, and sorrow.  With each passing month we grow more confident that we will be able to hold this blessing in our arms.  We have a scan at the end of the month to find out if we will be split evenly boys and girls or if the boys are going to continue to dominate and it will be 3 to 1 boys to girls.  Peter wants a brother, Joe and I want a baby.  We are making plans and dreaming dreams.  We are prayerful and hopeful about what the future holds.  

 

At the same time, our sweet, kind, resilient, fun-loving, 6 year old boy has progressively over the last 7 months lost most of his vision.  His vision has gone from needing glasses to be corrected, to his glasses being something he wears to protect his eyes but not really correct his vision.  His hands and his ears have now become his main tools and senses to see the world.  He has retinal degeneration.  His vision is now 20/350 and 20/600 and continues to worsen.  At a Low Vision Doctor appointment we were given a drawing of both his retina’s.  The area of his retina that is functioning is the size of the tip of my pinky on a 8.5 x 11 picture of a normal retina.   There seems to be no cure to what is happening and no real answers as to why and if/when things will go completely dark.  He can still see some, things just need to magnified (like times 16) and the lighting needs to be bright (read 3000 Lumens).  Somedays he can see more than others.  A few months ago he could see some of my facial features (my ears, my mouth sometimes) now most days he cannot.  

 

He will be learning Braille in school, he will be receiving mobility and orientation training.  He will likely add a white cane to his way of seeing the world.  Joe and I learning to navigate parenting Peter in a way that helps him feel secure in the midst of an ever changing situation.  We are trying to parent him in a way that Peter doesn’t see his vision loss as something that will hinder him.  While he may not get to live his dream of being a monster truck driver (a dream that was not all that likely even fully sighted); he can still be an author, a scientist, a cook, a builder, and a soccer player.  It may look different, it may take some tools that other do not use but it is possible.  It is my goal that I hear my little boy giggle and laugh each day.  Even though his eyes don’t function properly they still light up when his smile is genuine and real.  We do not want to allow Peter’s vision problems to take away from his childhood, his happiness, his joy.   

 

Even in the midst of an unknown future, diagnosis, and prognosis; we are still grateful.  Peter is otherwise healthy.  We can still hear the sound of his laugh.  He is not in pain (except when he bumps into things or people he didn’t see.) Other friends do not have that same luxury or blessing.  While his vision fading he is a growing boy with no other major health issues.  Other friends cannot make the same claim.  So while we struggle at times to know how to best navigate this new world we are in, with things like IEPs, Braille, ABLE accounts, and such, we are also thankful to hear the sound of Peters laughter, hear him playing the piano, or drumming on just about any surface.  We are living in a time where moments of joy and sorrow meet regularly.   

 

Adulthood, parenthood, ministry, and life are not always easy.  But we were not promised easy.  We were promised presence.  And we are have felt God’s presence with us this entire journey.  In the moments of joy and in the moments of sorrow; in the moments of fear and in the moments of relief; in the moments of laughter and in the moments of tears, He has been there with us.  

 

Say a prayer for us as we navigate these next few months.   Our families, our church family and the school have also been very helpful in this journey.  But there is still a lot to be figured out.  

 

Until next time – There are some benefits to your 6 year old not seeing so well.  The toy aisle at Walmart is a lot easier to get through now. J