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!