OUR NEW NORM

We have a new normal.  Here is what it looks like.

  • Sleeping in five different beds over the past 15 days
  • Waking up each morning having to orient yourself to which direction the bathroom is
  • Running through the airport like OJ Simpson to catch your next flight, only to have them close the door as you arrive at the gate
  • Six 1 ounce bags of pretzels and six 3 ounces mini glasses of Pepsi to meet your every hunger need as you fly from one city to the next
  • Sitting next to strangers from around the world all battling for the treasured 8 inches of arm rest that separates you from your neighbor
  • Missing friends from Florida as you reestablish friendships with friends in Wisconsin and New York
  • Waking up with little voices saying, “Poppie can you read me a book, play hide and seek, or just cuddle?”
  • Closing down one house and opening up another
  • Holding mail, forwarding mail, and losing mail

This is our new normal.  Often it is challenging.  It is always exciting.  It is not wrong.  It isn’t abnormal.  It is our new normal.  If I fight against it it crushes me.  When I embrace it and accept it, it no longer scares me or overwhelms me.  It becomes the norm.

I remember the first time we had to establish a “New Norm” as we cared for David.  At the age of eight, David began to lose his vision.  To be honest, we thought the world was coming to an end.  I remember thinking, how will we ever survive?  How will David read, walk, or enjoy life without his vision?  Well, guess what?  David learned to read braille, he continued to love playing outside with friends, and we survived.  We established our first new normal.  It was often challenging.  It was always exciting.  It wasn’t wrong.  It wan’t abnormal.  It had become our new normal.  Once we embraced it and accepted it, it no longer scared us or overwhelmed us so much.  It became our new normal.

Do you remember the first time you had to reset normal in your life?  What was it?  What helped you the most to help you establish your new normal?  Do you have any suggestions, ideas, or experiences that would help someone who may be facing their first “New Normal?”  I hope many of you will share something that just might help someone who is feeling alone and afraid.

PS: Don’t forget that normal is simply a setting on your dryer!


OOPS

Oops!  I accidentally sent out tomorrows blog before it was finished.  Please ignore it!  Stay tuned for tomorrows blog!

Warren


NEW NORMAL

We have a new normal.  Here is what it looks like.

  • Sleeping in five different beds over the past 15 days
  • Waking up each morning having to orient yourself to which direction the bathroom is
  • Running through the airport like OJ Simpson to catch your next flight, only to have them close the door as you arrive at the gate
  • Six 1 ounce bags of  pretzels and 3 ounces of Pepsi to meet your every hunger need as you fly from one city to the next
  • Sitting next to strangers from around the world all battling for the treasured 12 inches of arm chair that separates you from your neighbor
  • Missing friends from Florida as you reestablish friendships with friends in Wisconsin and New York
  • Waking up with little voices saying, “Poppie can you read me a book, play hide and seek, or just cuddle?”
  • Closing down one house and opening up another
  • Holding mail, forwarding mail, and losing mail

This is our new normal.   Often it is challenging.  It is always exciting.  It is not wrong.  It isn’t abnormal.  It is our new normal.  If I fight against it it crushes me.   When I embrace it and accept it it no longer scares me or overwhelms me,  It becomes the norm.

I remember the first time we had to establish a “New Norm” as we cared for David.  At the age of eight David began to lose his vision.  To be honest we through the world was coming to an end.  I remember thinking, how will we ever survive?  How will David read, walk, or enjoy life without his vision?  Well guess what?  David learned to read braille, he continued to love playing outside with friends, and we survived.  We established our first new normal.  It was often challenging.  It was always exciting.  It wan’t wrong.  It wan’t abnormal.  It had become our new normal.


Celebrate, Party! It’s good for you

I love a great party!  People laughing, celebrating, eating and drinking, storytelling, dancing, and yelling with arms raised high as your team scores the winning touchdown.  Who doesn’t enjoy a good party?  In fact, I think we were created by God to excel at celebration.  He wants us to celebrate life, each other, events both big and small, little acts of kindness, success, and even sometime our failures.  Very often it is the brokenness in life that shapes us and forms us into a better version of ourselves than we could have ever imagined.

I was looking through my calendar and realized I have a lot to celebrate this year.

  • My grandson, Ezra, turns four years old, and Levi will turn three.
  • My youngest son is graduating from RIT with his BFA.
  • My father-in-law’s business, Belmark, is celebrating 40 years of success.
  • Eastern Hills Bible Church, where I pastored for 15 years, is celebrating 50 years of serving and loving the community.
  • Brenda and I will be celebrating 34 years of marriage in July.
  • My niece, Sarah, will be getting married to the man she loves in June, and I have the privilege of officiating their celebration.

But it’s not only the big things we should celebrate!  I started to think about some of the smaller things worthy of a party in my life.

  • I went to the dentist a few weeks ago, and I didn’t have a cavity!
  • Brenda and I had a little tiff but worked it out and reminded each other we love each other and are for each other.
  • We were flying to visit our family, and we got bumped to first class.
  • I lost my TV remote but found it stuck between the couch cushions.
  • It snowed in Syracuse on April 30th, but it was still 83 and sunny here in Bonita Springs, Florida.
  • We ran out of lettuce and had friends coming over for dinner, but my mother-in-law gave us what she had.
  • Our friends from Door County, Wisconsin believed us when we said we would love to have them come visit us in Florida, and they came!
  • These same friends sent me my favorite fresh roasted Papua New Guinee Organic Medium to Dark Roasted Coffee from Kick Ash Coffee. If you want to order some, simply click on the link!

What do you have to celebrate today?  I am positive there is something worthy of a party!  Did the diaper last all night long so you didn’t have to change the sheets in the morning?  It’s time to party!  Did your aide remember to tell you how well your child did at the park when they went for a walk and how someone came up and spent 10 minutes talking to your child?  It’s time to party!  Did your child get the job they have been praying for?  Send out some invitations!  Did you just get an email from David’s Refuge telling you when your next respite weekend is?  It is time to party!  Did the IEP meeting go better than expected?  Break open a bottle of wine!

I would love to party with you!  What can we celebrate with you?  Be bold and share something with us.

 


Every Now And Then You Have To Boast

Would you mind if I took a couple minutes to brag?  I know Mom always said no one likes a bragger.  Even the Good Book, the Bible, says, “Don’t brag about yourself—let others praise you.”  Proverbs 27:2  But I can’t help myself!  I feel like I’m going to explode if I don’t brag a little about David’s Refuge. 

Six years ago when Brenda and I started David’s Refuge, we wondered if anyone would actually sign up and come to our home for a weekend of respite.  We converted David’s wing into a beautiful Bed and Breakfast.  We formed a Board of Directors.  We applied for our not-for-profit status.  We reached out to our community for financial support.  And finally, we opened our doors wondering if anyone would come.  And they did!

In 2012 we served 43 families.  We were blown away.  Fast forward to 2018.  In the month of March we served 51 couples!  That is more than we served our whole first year.  In the first quarter of 2018 we served 98 families.  Now do you see why I had to brag?  I’m sure my mom would forgive me if she were still alive.  But I’m not done!  Let me list a few things I just have to brag about.

  • This year we have 261 weekend respite opportunities.  As of today 223 of those weekend respites have been booked!
  • We currently use 19 Bed and Breakfasts that love and support our mission of Caring for the Caregiver.
  • We now have 28 Host couples that make sure our parents know they are not alone, what they do matters, and they are loved by God.
  • Christine Corbett just joined our staff as the Director of Philanthropy, making our staff one of the most amazing nonprofit teams in all of Central New York.
  • Our Board of Directors is made up of a diverse and passionate group of leaders who are fully committed to the success of David’s Refuge.

I could go on but I think I may be pressing my luck with Mom’s words of encouragement to not boast!  I do want to say thank you to anyone reading this who has volunteered, prayed, financially supported, or encouraged us over the past six years.  Lives are being changed, marriages held together, and families supported because of you.  Thank you!

Warren and Brenda

PS: Proverbs 27:2 says, “Let others praise you.”  If there is something you want to boast or praise David’s Refuge for, feel free to leave a comment.  I promise you my Mom won’t mind!


Defining PROUD

Today’s Blog is brought to you by Sarah Watson – David’s Refuge Event Manager

 

Definition:

proud/

adjective

1.

Feeling deep pleasure or satisfaction as a result of one’s own achievements, qualities, or possessions or those of someone with whom one is closely associated.

2.

Having or showing a high or excessively high opinion of oneself or one’s importance.

“She was very proud”

A few weeks ago my little guy took his first “legit” steps! He has been creeping around furniture for MONTHS now, but he hadn’t had the confidence of letting go.

That sure is a lot to expect from a tiny person isn’t it? To be carried around or safely crawling for the first year of your life and then… “Hey man don’t worry about it! Just let go!” Well, Chase finally found his inner strength and let go! He took 6 tiny steps towards my mom (who was offering him a cookie) and oh boy was he proud of himself!

He looked like a puffed up little bird smiling ear to ear at us as he munched on this cookie bite.

I had a thought the other day… When do we stop being proud of ourselves? Yeah, you do something “awesome” or “accomplished” and you feel great, but what about the little things in life? Yeah I walk all the time…I’m not proud of myself? I know I spend more time thinking about the things I didn’t do than the things I actually did.

You know the saying “don’t sweat the small stuff?” Let’s take that a whole new direction and say “let’s celebrate the small stuff.”

I got a shower this morning! *ring ring ring*

I got 2 things crossed of my check list! *ring ring ring*

I ordered a pizza so my husband and I didn’t have to cook dinner tonight! *ring ring ring* (and pizza is delicious!)

(Clearly the *ring ring ring* is me ringing my imaginary bell at myself)

Of course this is a super silly example of positivity and I know everyone has a lot of serious and scary things happening every day in their life, but if we can take a mental note (a little *ring ring ring*) for the small things that we do in the day, I will guarantee you that you will start to feel proud of yourself.

As I watch my little boy grow up and accomplish new things, I want him to always be proud of himself. And isn’t the best way to lead by example?

So guess what my son? Mama wrote another blog post today! *ring ring ring* Mama booked a tent and bouncy houses for the Rochester summer picnic! *ring ring ring* And Mama took a few steps towards being more PROUD of herself today! *ring ring ring*


Sleep Deprivation

Yesterday my doctor looked me in the eyes and said, “You have to work on your hygiene!”  No, I’m not my talking about my personal hygiene.  My appointment was with a sleep specialist who talked about the importance of good sleep hygiene.  I have struggled with sleeping for many years.  As the parent of a child with a special need, there were countless nights we cared for David throughout the night.  Near the end of David’s life I went months with what felt like no sleep.  I finally swallowed my pride and accepted a prescription for Ambien.  I was told that it is not addictive.  They lied.

Last night was the first night I tried to put into practice some of the steps the doctor suggested.  I removed my clock radio, turned the air conditioning up so the room was cold, set my alarm for 6:00 AM, stopped drinking water before 8 PM, turned off my computer and iPad and iPhone two hours before 11 when I was scheduled to go to bed, made sure the room was pitch black, and for the first time in years did not take my 5mgs of Ambien.  It was one of the worst nights of sleep I can remember in a long time.  There were a few benefits.  Throughout the night I prayed for my son and daughter in law who have three under the ages of 4 and experience sleep deprivation on a regular basis.  I meditated on Psalm 8:4 that says, “In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety. ”  And I read a book and caught up on my bible reading.  I finally went to sleep.  Tonight I am sure I am going to face the same thing.  I am going to tweak the program a little.  I think cold turkey was the wrong decision.

Unfortunately, there are many families that can’t “tweak the program a little” so they can get more sleep.  Their child needs to be rolled several times a night to prevent sores from forming.  Their son wanders the halls of their home all night singing, crying, or knocking on their door.  The cries of their nonverbal daughter blasts through the monitor next to their pillow telling them she is afraid or cold and unable to cover herself.  Sleep deprivation is a reality for many, if not most, families caring for children with special needs or struggling with a life threatening disease.

I wished I had an Easy Peasy solution for how to get more sleep.  If it were only as simple as counting pretend sheep, covering your body in lavender, or drinking a glass of warm milk while listening to light jazz on an all night radio program, but it is not.  So I have an idea!  I know there are many families who read this post that are raising children with special needs who have wrestled with getting sleep for years.  Let’s gather some of the lessons you have learned and share them with parents who are struggling.  How have you dealt with sleep deprivation?  What tips have you learned and put into practice that have helped you as a family?  What resources have you read that gave you some effective tools?  Are there any safe alternative approaches to improve your sleep that you have found helpful?  Let’s gather all of these ideas and create a resource we can share with other families just like ours.  Can you imagine the beauty of a mom or dad taking one of these ideas and using it to help them battle the effects of sleep deprivation?  Let’s do it!

Warren

PS: Knowing that I am going to have some extra time on my hands over the next few nights feel free to hit reply and share your first name and I will pray for your sleep.  If there is anything specific you would like me to pray for let me know.  It would be my pleasure!  If you want to share it anonymously, email me at warren.pfohl@gmail.com.  Sleep Well!

 


Do Something.

I spent this past weekend searching for a missing boy with autism. I was notified early Saturday morning that volunteers were being requested to help search for a 14-year-old child who left school property after getting off the bus on Thursday morning. Due to an alarming number of systemic and human errors (to include multiple teachers actively and incorrectly marking Trevyan Rowe “present”) his mother was not notified of his absence. When it came time for Trevyan to get off the bus, he didn’t.

By the time the police were notified, Trevyan had already been missing and alone for 10 hours. Those early, crucial hours just after a child goes missing… they were wasted. Nobody was aware, so nobody responded, so nothing was done.

Hundreds of volunteers spent the weekend attempting to support the Rochester Police Department in their search for Trevyan.

It was a beautiful outpouring of unity and support. Still, after an extensive air, land and water search, Trevyan’s body was eventually discovered in the Genesee river on Sunday afternoon.

While anyone can sympathize with the horrific nightmare that this family has endured, many of us in the David’s Refuge community can also empathize. Many of us are intimately familiar with the fear and uncertainty that comes with parenting a child with unpredictable behaviors. On Wednesday evening, just one day before Trevyan wandered off school property, my son – who suffers from impulsivity, emotional instability and volatile behaviors as a result of Reactive Attachment Disorder – ran away for the first time. I am certainly not comparing the two experiences seeing as my son basically hid in the back yard until he “felt cold and realized he had no other place to go in this weather.” After hours of long and serious discussion, I tried to lighten the mood and joked with him saying “well, I guess we look forward to seeing what milder weather brings!” I look back at that moment now and I cringe at myself for attempting to bring some levity to a situation that could have ended the same way for my family as it has for Trevyan’s.

In the aftermath of this tragic and senseless loss, I can’t help but want to do something. I know that there is often nothing to be done after the loss of a child, but in this case… so much needs to be done. According to news reports, six 911 operators have been suspended for not following proper protocol after receiving several emergency calls that a child was seen crouching on a bridge and walking down the highway. Six. Six people who had the power to do something, did nothing. The erroneous attendance report… the lack of adequate supervision for a child with special needs to make it safely into the school building… this list goes on.

There is so much to be done at the systemic level, and it is very easy to feel overwhelmed by it all and to do nothing. But all of us can do better. We can more firmly advocate for our kids to have all the supports in place for their safety. People told us we would never get an aid for our son because he does “too well in school.” We fought and fought, and he now has a 1:1 aid during the unstructured times when he most struggles with impulsivity, including arrival and dismissal times. Sometimes doing better looks like not taking “no” for an answer.

I don’t know what it looks like for you to do something. Maybe it means you will be a better 911 operator. Maybe you will be more mindful of marking your classroom’s attendance correctly. Maybe you can be a better aid or monitor. Maybe you can join the search the next time the system fails a child. Maybe you can vote for better funding of public schools, or become a trained respite provider for a parent who is too exhausted to advocate for her child. Maybe you can be a more compassionate nurse, more loyal a friend, or a better counselor. Maybe doing better means that we resist the urge to lighten the mood during a conversation that needs to feel heavy. I don’t know what it looks like for you, but I know there is something we can all do better.

And in light of this boy’s senseless passing, I think we really must. 

This guest-post was written by Lara Capuano. To read more from her you can visit laracapuano.com or to hear her speak – register here.


My New Habit

 

I’m working on developing a new habit.  It’s going to take time and effort, but I am confident that I will succeed.  You see,, for the past five or more years I have wasted some of the most productive hours of my day with brainless activity.  Like a gerbil running in circles on his exercise wheel, I would start each day with what seemed like purpose.  I would read the local newspaper and then check my email to see if Travelocity had offered me a 60% discount on a trip to Ireland or Costco had a sale on the gourmet steak and burger grill pack I’ve had my eyes on.  Nothing wrong with either of these two things.  But then it would begin.  I’d start running a little faster on my wheel and open up Facebook.  I would look to see if anyone asked me to be their friend, I check to see if someone liked something I wrote or posted, and then I would start stalking friends and family.  I would start watching videos of the pig who became best friends with the little white duck that was orphaned by its mother.  I would start looking through someone’s 236 vacation photos, wondering when I would ever be able to go there.  I’d watch videos of liberals yelling at conservatives and conservatives yelling at liberals.  This could go on for a while.  I would then kick my wheel into high gear, open up Flipboard, and start combing the internet for news, recipes, stories from Syracuse, weather, the Green Bay Packers, technology, electronic gadgets, free iphone apps, and on and on it went.  Without knowing it, I was like the gerbil who forgets to hop off the wheel and is spinning around and around until I am flipping upside down in mental exhaustion.  I realized this had to stop!

I’m two months into developing my new habit.  I still start the day with a cup of coffee but I don’t open my ipad or iphone or computer.  I pull out a notebook and write the word “Yesterday” on the top of the paper.  I take a few minutes to think about what I did, who I ran into, what I learned, mistakes I made, things I read, and dreams I may have had.  It has been a very helpful exercise.  It is so true that an unexamined life is really wasted.  I then write the letters A C T S and this becomes the basis of my prayer for the day.  A stands for Adoration.  I spend a few minutes just thinking about how awesome God is and I write it down.  Next, I take a few minutes to examine decisions and thoughts and actions that hurt someone else or dishonored God.  C stands for Confession.  If you have ever been a part of Alcoholics Anonymous this is step five, “Admitted to God, to ourselves, and to another human being the exact nature of our wrongs.”  I then stop and list what I am thankful for.  T stands for thanksgiving.  I can’t tell you how powerful this little exercise is.  Someone once wrote, “No duty is more urgent than that of returning thanks.”  Often I will pull out a card and and write a note to let someone know how thankful I am for them.  And finally, I write a list of the things I would like to see God do.  S stands for supplication.  I ask him to heal Finn, I pray for wisdom to make wise decisions, I ask him to fill the parents we serve at David’s Refuge with hope and strength and endurance, I pray for Turning Point Church, and I pray for my kids and grandchildren.  I am loving my new habit.

I still read my newspaper, check my email, and look through Facebook, but these things no longer control me or start my day.  Today in my time of Thanksgiving I wrote down the following: “I am thankful for everyone who takes the time to read my blog.  I am thankful for those who support and make David’s Refuge possible.  I am thankful for Brenda.  I am thankful for time in New York with my kids and grandchildren.”  What are you thankful for today?  Be brave!  Hit reply and let all of us know one things you are thankful for today.

No longer a gerbil!

Warren


Defining a year…

Today’s Blog is brought to you by Sarah Watson

Year
yir/
noun
  1. 1.
    the time taken by a planet to make one revolution around the sun.
  2. 2.
    the period of 365 days (or 366 days in leap years) starting from the first of January, used for reckoning time in ordinary affairs.

I watched a super sappy sad video that was going around on Facebook… you know, one that’s there to make you cry and sentimental. Reading the words on the screen telling me that the days are so long, but the time goes by so quick, I semi-rolled my eyes at it because the night before it took over an hour to get Chase to bed, I had also just told Chase to stop chewing on a book for at least the 30th time that day. I was really hoping the “time goes by so quick” would kick in soon, so my husband would get home and I could make the ceremonial “Here is the child” handoff.

A few days later I sat around a table with multiple David’s Refuge parents. I was listening to a mom speak about her daughter and she very candidly said “We are not planning on her going to college. We are planning on her living another year.” Oh my gosh. I sat there frozen. My husband and I had just opened a 529 college savings plan for Chase days before, and now I’m sitting across from a mom who hopes her daughter lives at least another year. That just really puts the length of a year into perspective.

 

 

Chase turned one year old on the 14th. My tiny little squish (we affectionately call him) is no longer a baby, but a 24 pound toddler that is going to take off walking any second now. On Chase’s birthday I thought about that mom. All of a sudden the days and nights didn’t seem long at all. That year had completely vanished right in front of my eyes. One year was gone. One entire year.

Of course the past year of my life has been busy (ya know, having a baby and all) but what else did I do this past year? What else could I have done? One thing I know I could have done better and WILL do better is taking in each moment as they come. To take a mental snapshot of things I want to remember, things that are important to me. Yeah of course I’m going to be frustrated that Chase won’t stop chewing on his books… but I laughingly put one of his extremely chomped books in this memory box this morning, so I can make sure he remembers his taste for publication.

I just showed CJ the sappy video… when it ended, my tough adorable husband had tears rolling down his face. He said to me “It’s just so easy for us to take for granted that we have a healthy baby.” I agreed. “We need to treasure every single moment with him because he’s going to be so big soon and think we’re lame.” Well yeah that last part I’m sure is true…

Being a parent of a “Typical” child, but working for an organization that helps parents who have special needs children is challenging. Challenging in all of the right ways. It challenges me (and my husband) to take a step back, and look at our life. To be grateful for all that we have and for our families future. Also to appreciate the opportunities we have to learn from the very special families that we meet through David’s Refuge. Their stories and experience continue to shape us into the family we strive to be.

And just because I can’t keep the super sappy video to myself. Grab a tissue… Here it is. Sorry!