Locating a mental health professional to help you cope What I've learned about living from my chronic illness - Children / Parenting
Login   |     |   Wednesday, August 23, 2017

Sharecare logo with photo of Dr.Oz.

Shelley is proud to be a part of co-creator Dr. Oz’s interactive Q&A website Sharecare. To learn more or see how you can get involved,visit www.sharecare.com

Recent Books
Recent Videos
Tweets
Blog Title: What I Learn About Living From My Chronic Illness by Shelley Peterman Schwarz
Chronic illness changes every aspect of your life. In my blog, I reflect on my 30+ year journey living with primary progressive multiple sclerosis (MS). I share thoughts, insights, and lessons learned that hopefully will help you or someone you know. - Shelley
By Shelley Peterman Schwarz on Sunday, March 20, 2016

I was so naive Wisconsin State Journal Logoand unprepared when I became a parent. I was completely overwhelmed by the 24/7 parenting responsibility. And, I certainly didn’t expect to be diagnosed with multiple sclerosis (MS) when Jamie was 5 and Andrew was 3. I quickly realized that being a parent with a chronic, progressively disabling condition is a challenge of monumental proportions. So, how did I manage? How did I cope? What do I know now that I wish I’d known then?

 

Probably the first thing I learned was that there are certain things beyond a parent’s control. One of those things is that kids are born with a certain temperament, a sort of genetic way of being. Some kids are born happy. Some are born fussy. Some love a crowd while others hide in the corner. I didn’t think children had much personality until they were 2 or 3 years old and I thought, as their mother, I’d have more influence on my children’s temperament and personality than I did.

 

Thinking back to those early years, all I remember is being exhausted all the time. It wasn’t until we got into a daily routine that life became manageable. We ate meals at set times. We all rested at nap time. Bedtime rituals had a starting and ending point. If we didn’t have a schedule, everything fell apart and I was just as whiny and cranky as the kids were, maybe even more so.

 

I also realized that when you have two kids, one will be good when the other misbehaves. I often wondered if, after I went to bed, my kids got together to plot whose turn it was next to “act out” and drive me “up-the-wall.” Recognizing this pattern helped me manage. (My friends who had more than two children confirmed my findings that there’s always someone who demands extra time and attention.)

 

Doing chores seemed like it should be a logical extension of living in a family. When the kids did help, I had to learn to accept the level of help they were able to provide. The floor was not always swept as carefully as I would have liked and books were not always put on the shelves neatly. But, the job was done and as the kids got older, their skills and abilities improved.

 

When the children’s bedrooms became disaster areas, I closed their doors and waited for an opportunity to “encourage” a cleanup. Sometimes it took the start of a favorite TV program to get a necessary chore done. I was not above bribery.

 

If I was too tired or unprepared to handle a dispute or unacceptable behavior, I’d tell the kids to go to their respective rooms. I explained that I needed time to think over the situation before I could react. It helped me handle stressful times more rationally.

 

Throughout their growing up, I tried to treat Jamie and Andrew with respect, even when they were showing their less-than-perfect sides. I tried to react like a rational adult. Sometimes I was successful, sometimes I wasn’t. My motivation was the Golden Rule I learned as a child. In other words, treat your kids the way you would want to be treated because, one day your children will be in a position to treat you as they were treated. It’s a sobering thought.

 
By Shelley Peterman Schwarz on Monday, February 25, 2013

Wisconsin State Journal logoFebruary is American Heart Month and everywhere we look, we can find ideas and tips for keeping our hearts healthy.  But I think there’s another “heart condition” that rarely gets attention, and yet, it has the power to make us sick as well.  It’s “heartache,” that feeling that your heart is about to break from the pain and sadness of losing someone you love.  My guess is that most people have had an experience like this sometime in their life.  Time helps the condition of "heartache," but there is always a hole in our hearts from our loss. 

 

My first experience with this excruciatingly painful condition was when...

By Shelley Peterman Schwarz on Friday, February 08, 2013

Thank you note from a child

 

You can teach children to write their own thank you notes even at an early age.  Before they enter school and learn how to print, have them draw a picture to send the gift giver.  Pictures can be as simple as ...

 

 

 

By Shelley Peterman Schwarz on Monday, January 14, 2013

Wisconsin State Journal logoWhen I was young, the holidays meant the older generation would eat and converse around the dinner table while the kids went outside to play. Nowadays, it’s more likely that the kids are plugged into a computer or gaming system creating a lot of ambient beeping, exploding, and cheering noises. When you add in the screaming and shouting at the big game on TV, the noise and chaos sometimes makes me wish I could click my heels together and be transported to the "Land of Peace and Quiet." Before the holidays next year, I'm going to review this list...

By Shelley Peterman Schwarz on Tuesday, January 08, 2013

Shelley hiding under a blanket I want to be a fun grandma to my five grandchildren, (ages 3-7). Even though I have a severe disability (due to MS), and use a 3-wheeled Amigo scooter to get around, I still want to play with them and be a part of their lives.  I may not be able to be the grandma I want to be, but I can still be fun to be with!

 

That's me playing hide-and-seek.  I "hide" and they squeal with delight when they find me.  

 

 

See more pictures of a "fun" wheelchair grandma...

By Shelley Peterman Schwarz on Thursday, January 03, 2013

Who needs an amusement park ride when Grandma Shelley is around?

 Grandma Shelley giving scooter rides

I love being an attraction when I'm with my grandchildren. Whether I'm at a birthday party, the park, or a family reunion, l love giving scooter rides.

By Shelley Peterman Schwarz on Friday, December 21, 2012
When you use plastic clothes baskets as toy boxes, even young children can fill and push them around.
By Shelley Peterman Schwarz on Wednesday, October 31, 2012

I had one of those melancholy, out-of-sorts, “down” days yesterday when I just couldn’t get out of first gear.  FoJordan with her Teddyrtunately, I had nothing pressing so I started my day with a two-hour nap. But even that did not perk me up. I felt like a whiny child who just didn't feel good.

 Jordan & Matt with their "teddies."

And then I remembered the pictures that I took of my grandchildren.  With thumbs in mouths and  “teddies” cuddled close, ...

By Shelley Peterman Schwarz on Tuesday, October 30, 2012

McDonald's Hot Fudge Sundae

 

Yesterday, we drove home from Chicago after a weekend of babysitting for our grandchildren.  On the way back, I asked Dave to stop at McDonald's for one of their hot fudge sundaes. At only 330 calories, it's a little treat that I allow myself.

 

Why do I NEED A TREAT?

 

By Shelley Peterman Schwarz on Thursday, October 18, 2012

I can'tBaby Oren sleeping believe that my grandson Oren, is almost 3 years old.  I haven't seen him since the end of August and altogether I've Skyped with him, it's not the same as being in his presence.

 

This weekend we'll make reservations to see him for his upcoming birthday.  That will put a smile on my face and I won't care that it's been dreary and rainy for the last 3 days.

 

I remember when he was born,  he looked just like his dad, Andrew, did as a baby, with beautiful, silky black, straight hair.  Holding baby Oren was like ...

By Shelley Peterman Schwarz on Wednesday, October 17, 2012

Jordan arranging roses

 

"Gwamma, can we do a pwahject?" my granddaughter asked me, referring to her upcoming visit to stay with us.

By Shelley Peterman Schwarz on Monday, October 15, 2012

Wisonsin State Journal LogoOctober means Fire Prevention week.  Since eighty percent of fires occur in the home, it is important for families to discuss what to do in case of a fire, especially if your home includes someone with special needs.

 

First, have a plan. Have a designated meeting place outside the house and emphasize that leaving the house to escape the fire does not mean you are abandoning your siblings or pets.  

 

Stress the importance of never going back inside once you are out.  Call the fire department after you are safely outside: never call from inside a burning home.

 

Show children...
By Shelley Peterman Schwarz on Monday, September 24, 2012

Wisconsin State Journal logoOn the second and fourth Saturday's of every month, my Tips for Making Life Easier™ column appears in the Wisconsin State Journal newspaper.  The columns are combination of tips, strategies, products and AHA moments/discoveries that make life easier for people living with chronic illness and disabilities. I've been writing the column for 26 years and I've never posted them online before.  So, starting with Saturday's column, (September 22, 2012), I'll be posting each column on the Monday after it is in the newspaper.  As always, I'd love your feedback...

 

Dear Readers,

 

I get letters and emails all the time asking, “How do I…?” Where do I find…?”

By Shelley Peterman Schwarz on Friday, September 14, 2012
Give a toddler something small to hold.  It's easier to dress a young child if they hold a raisin or piece of dry cereal in their hand.  A closed fist makes it easier to get hands through garment sleeves.
By Shelley Peterman Schwarz on Thursday, September 13, 2012

Jamie 5 and Andrew 3“Mommy, are you going to die?” my 5 year old daughter, Jamie asked when we told her that Mommy had an illness called multiple sclerosis (MS) and the doctor didn’t have any medicine to make Mommy better.

 

It was the first of many nights that I cried myself to sleep because my MS diagnosis, I cried because my diagnosis robbed my child of the carefree childhood she deserved. And, although MS is not a fatal disease I worried about the future.

 

Some might ask, why would you tell your child in the first place and I would answer that question by saying this:

By Shelley Peterman Schwarz on Thursday, August 16, 2012

We were in Chicago for the weekend visiting the kids and grandkids. Dave and I were taking the early shift while our daughter and son-in-law got a few extra minutes of sleep. Jordan, our granddaughter, asked me to help her put her hair in a ponytail.  

 

She had just mastered applying hair “detangler” and combing it through her hair.  She stood very still and was patient as I tried to collect her hair in my hand to form a pony tail, but my hands were too weak.  No matter how hard I tried, it just didn't...

By Shelley Peterman Schwarz on Thursday, August 09, 2012

I entered this humorous anecdote in a Grandparent's Day contest.  If it makes you laugh, please vote for my submission.

 

Jordan, my 7 year old granddaughter, has always been acutely aware of the fact that I am disabled and need a lot of help from the people around me.  Ever since she was a toddler, she has been my little helper and messenger.   When she was less than 2 years old, she loved watching me in the bathroom putting on my make up. On one particular day, I asked her to go get Papa because I needed his help...

By Shelley Peterman Schwarz on Monday, July 02, 2012

When our son, Andrew, was seven years old, we had a power struggle over what he would wear to Sunday school.  My husband, Dave, and I said he had to wear khakis.  Andrew wanted to wear sweatpants.  We tried to reason with him, but he was adamant, claiming we were terrible parents for trying to impose our will on him.  Finally, Andrew left the room to get the telephone book.  As he rummaged furiously through the book, I asked, “What are you doing?” His reply, “I'm calling the Fosters. I'm going to live with a foster family!”

 

   He was such a cute kid when he was 7.  Now 36, he still keeps us laughing!

By Shelley Peterman Schwarz on Tuesday, June 26, 2012

My girlfriend's daughter-in-law was recently quoted in an article in the Washington Post and it got me thinking.  The article was about "letting go" and giving your child new, age appropriate experiences and opportunities to learn and grow.  The message being: I know you can do it.  I trust you.  I believe in your ability to handle the situation.  And, I think this is especially important when a parent has a chronic illness.

 

Learning to face challenges "alone" in those early years prepares them for those bigger challenges and situations that inevitably come along as they grow up.  Kids need to discover on their own how

By Shelley Peterman Schwarz on Monday, June 25, 2012

This weekend was our daughter’s 20th year high school reunion so she was back in town.  (Dave and I still remember our 20th year high school reunions which seem as though they were only “a couple of years ago.”) 


        

 

Seeing these girls again brought up strong memories of the time they spent at our house. One particular memory Dave and I laughingly remembered involved one of the girls when she came for dinner one night.

 

When the children were about 9 and 7, it became very difficult for me to make dinner for the family.  I had so little energy to begin with that when that exhausting multiple sclerosis (MS) fatigue and mental confusion took over, there was nothing I could do but get into bed and sleep.  Since mealtimes were always a challenge, we made meal preparation and clean up a family affair.  Everyone had to help; our rule was that, “Nobody leaves the kitchen until everyone leaves.”

By Shelley Peterman Schwarz on Wednesday, June 20, 2012

Having gone to Girl Scouts camp as a child (years before my MS symptoms and diagnosis), I had fond memories of my outdoor adventures and longed to get outside in that environment again. However, when I grew up and MS entered my life, Dave and I never went camping with our kids (Jamie and Andrew) when they were little because my limitations were too difficult to accommodate in a rustic outdoor setting.  We were barely "hanging on" doing the necessary household and school activities, without creating new challenges. 

 

 

 

Now it was time to be adventurous and try getting the family together for a camping experience, at the accessible Cabin in the Woods in Mirror Lake State Park in Wisconsin!

 

It was easy to dream of that idyllic "Christmas holiday" type of family reunion, when family comes from near or far just to be together...

By Shelley Peterman Schwarz on Monday, June 18, 2012

Thank goodness Dave and I had a cabin that had heat last night because we needed it.  Son Andrew and his family slept in a tent, and although they were prepared for the cool/cold night, it felt good to them to come into our warm cabin this morning for that first cup of coffee.

 

It really is working well that we each have our own "sleeping quarters" so our kids (Jamie and Andrew) can get all the grandkids to sleep using the nightly rituals they're used to.

 

And, I am letting my adult children (Andrew is 36 & Jamie is 38) and their spouses negotiate the daily plans. It takes the pressure off me and I love it that I'm not in charge...

By Shelley Peterman Schwarz on Wednesday, June 13, 2012

My grandchildren, ages 5 and 2, are visiting and our house is a whirling dervish - reminders of the days when their father, Andrew, and Aunt Jamie, were young.  I love watching Andrew's children play. They play like this all the time and it is a joy to watch.



Back when Andrew and Jamie were young and my progressive and progressing multiple sclerosis (MS) kept me in a constant state of overwhelming fatigue, I was always...

By Shelley Peterman Schwarz on Tuesday, June 12, 2012
I can't believe it!  A minute ago, I thought I had everything ready for this upcoming family reunion.  Now I learn that I have one more problem to solve  -  and quickly! Son, Andrew, and his 5 year old daughter are flying in tonight and Andrew just called to tell me that we'll need a booster seat for the car when we pick them up at the airport. (I thought Andrew was bringing a carseat with him.)

I had no idea where I would find one because ...

By Shelley Peterman Schwarz on Monday, May 28, 2012

When I was diagnosed with a primary progressive form of multiple sclerosis (MS), my daughter, Jamie, was five years old. I was only 32 and worried terribly about my future. I worried that I would not live as long as other mothers, or that I would become too incapacitated to participate in my life or the lives of my children. Being in my mid-30's, with young children, (Jamie's brother Andrew, was 3), I worried what the future held. How long would I be around and how disabled would I become?

 

So, last Friday night proved to be one of those VERY MAGICAL times in my life, a sort of full circle event, that filled me with love and gratitude.  Let me try to explain by taking you back 31 years...

 

Jamie in the center.

 

Exactly 31 years ago, Jamie was 7 years old. 

By Shelley Peterman Schwarz on Wednesday, May 23, 2012

My son, daughter-in-law, and their children (4 and 2 ½) are coming for a visit and I can hardly wait! Since they live 1,000's of miles away, we don't see them as often as we would like so these visits are very precious to me...any time I can spend with my adult children and their children is pure joy!

 

 

 

I missed so much when my son and daughter were growing up because my progressive form of MS was so physically and emotionally draining. The debilitating fatigue could only be described in terms of this, if the house was on fire, I didn't have the strength or energy to get out of bed to save my life or the lives of my children.

 

I fought hard to stay engaged, but I missed huge chunks of time with my family because I was in bed, often sleeping.  So, now that my MS is stable, I have another chance...

By Shelley Peterman Schwarz on Tuesday, May 22, 2012

This past weekend took a lot out of me.  With being with extended family on Saturday night and Jamie and the kids on Sunday, for a belated Mother's Day, I have been having trouble falling asleep.  I think it’s because I was over tired, that always seems to happen when I push myself too much.  I could barely keep my eyes open when Dave helped me out of bed this morning. 


Instead of fighting it, I gave myself permission to...

By Shelley Peterman Schwarz on Monday, May 21, 2012

  (L) Brother Steve, Mom, brother Tom)

I had a wonderful Mother’s Day filled with lots of love and gratitude and it's taken me a week to be able to express my thoughts about my mother. 

 


I am deeply grateful that I was able to celebrate Mother's Day with my 89 year-old mother. She’s quite a beautiful, gracious, delightful lady, and is still very much the highly respected matriarch of our family.  Even though Dad passed away 22 years ago, Mom continues to teach our family what's really important through her example.

 


Anyone who is a mother knows what a difficult mine field it is when you’re raising children. We do it without a road map or directions, and many times we do it carrying the scars from our own less-than-perfect childhoods. Here are are some of the best lessons I learned from my parents...especially my mother -- about being a mom.


By Shelley Peterman Schwarz on Sunday, May 13, 2012

  (R to L) My mom, daughter, Jamie, & Mom's sister, Aunt Shirley.  (Me, front and center)

 

Today is Mother’s Day and I’m deeply grateful that I can celebrate the day with my 89 year-old mother. She’s quite a beautiful, gracious, delightful lady, and is still very much the highly respected matriarch of our family.  Even though Dad passed away 22 years ago, Mom continues to teach our family what's really important through her example.

 

Anyone who is a mother knows what a difficult mine field it is when you’re raising children. We do it without a road map or directions, and many times we do it carrying the scars from our own less-than-perfect childhoods. On this Mother's Day, I’d like to share with you some of the best lessons I learned from my parents...especially my mother -- about being a mom...

By Shelley Peterman Schwarz on Thursday, May 10, 2012

Recently I received call from a woman who had MS; her son was in his 20’s and was being verbally abusive to her. His anger over her MS and how it was affecting “his life” was escalating and she was worried about her safety; she finally had to resort to having a restraining order taken out against him. She needed to talk to someone (me in this case) about her situation.

 

It wasn’t the first time I’ve received a call, letter, or email with a story like this.

By Shelley Peterman Schwarz on Wednesday, August 10, 2011

My son, daughter-in-law, and their children (4 and 19 mos.) are coming for a visit and I can hardly wait! Since they live in California we don't see them as often as we would like so these visits are very precious to me...any time I can spend with my adult children and their children is pure joy!

 

I missed so much when my son and daughter were growing up because my progressive form of MS was so physically and emotionally draining. The debilitating fatigue could only be described ...

Blog Search
Blog Archive
Archive
<August 2017>
SunMonTueWedThuFriSat
303112345
6789101112
13141516171819
20212223242526
272829303112
3456789
Monthly
Go
Recent Posts
My Parenting Discoveries
Cruising! The only way to travel
My Great Depressssion and what I learned from it
How my Shingles Affected our Family

Making Life Easier Contact Us at Making Life Easier
9042 Aspen Grove Lane | Madison, WI 53717-2700
Phone: (608) 824-0401 |
Shelley@MakingLifeEasier.com


website security