Where Did Mommy's Superpowers Go?

Assistant Principal

Spring Happenings!

A Note from Jenifer                                                                              May 2011
Greetings!

 

 

It's been a busy month and April has practically flown by!  So much has happened since my last newsletter.  Where Did Mommy's Superpowers Go? (WDMSG?) is now available at several local bookstores!  Willow Books and Cafe in Acton, MA is truly a "neighborhood bookstore with the selection of a superstore and the heart of a family business."  The Paper Store will also carry WDMSG? at their Maynard, Acton and Sudbury locations.

We kicked off the school spring vacation with Jason's stellar performance in The Secret Garden.  He was fabulous as Mr. Crawford!  Returning to school was extra fun for Jason since he got to be Assistant Principal for the Day!  I had the winning bid for this prize at our school's spring auction, and it was certainly a day Jason will never forget!  Later in the month I really enjoyed sharing my story behind the making of my book with parents at the JCC in Acton, and returned the following morning to read it to the preschool children.  The kids were 3-5 years old and were so welcoming and participatory; it was great to see how engaged they were.  My favorite part was the huge group hug I received at the end!

Where Did Mommy's Superpowers Go on May 10?  To WCVB Channel 5 for an interview with J.C. Monahan for her segment, Boston's View!  J.C. was just as sweet, bubbly and adorable in person as she appears on T.V., and made it easy for me to feel comfortable as if we were just having a chat.

                                 

Steve, Jason and I just returned from a few days in Orlando where we enjoyed visiting Epcot and the Universal theme parks.  There's no sleeping in during a Disney vacation, so we hit the parks from the time they opened and made sure we squeezed in every "hot" attraction:  Test Track, Soarin', Mission to Mars at Epcot; Harry Potter, Jurassic Park, and Spider Man at the Islands of Adventure; and Shrek, The Simpsons and Revenge of the Mummy at Universal.  What made this trip extra special for me was being able to go nonstop from morning until night without the wheelchair I required two years ago...it felt terrific to be able to walk unrestricted, but this year we couldn't bypass the long lines like we did before!

                               Donald Duck

As grateful as I am to be able to keep up with the crazy pace of parenthood, I clearly remember the years I could not.  My hope is for this newsletter to be a monthly source of information & resources for any family balancing child-rearing while simultaneously battling a serious illness. I know there are so many of us out there facing this challenge, whether we're in the middle of medical treatment, in the process of recovery and recuperation, or dealing with more long standing changes.  I'll share what helped me through it, but feel free to offer your own tips, stories, suggestions and resources as well.


Warm Wishes,

 

Jenifer

 

Featured Article

Preparing for Treatment:  How to Keep You & Your Family Organized

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As a parent, being diagnosed with a serious illness and facing intense and aggressive treatment is not only devastating news...it's downright inconvenient!  There is so much we do to keep our families happy, our houses running...who can replace us?  We have big shoes to fill, all the more reason to think positive, stay strong, and focus on getting healthy and well again.  For my bone marrow transplant, I had to leave my home and rent a small apartment within 5 minutes of Boston Medical Center (sure, *that* was in the budget...NOT).  It was tough enough knowing I'd have to be apart from Jason for 1-2 months, but now I had to make sure things kept running at home as I prepared myself to move as well. 

Once I had processed the news of my diagnosis and treatment, I prepared myself for the hardest part:  asking for and accepting help.  I found this incredibly difficult, as I took pride in being a mom who did it all; taking care of my house and family, volunteering in the community, while still squeezing in some time for myself.  I had no other choice but to rely on my friends and family who were only too willing to assist in any way possible.  As uncomfortable as this was for me, I only had to look at Jason to know that I was doing the right thing by graciously accepting the generous and selfless offers of assistance extended to me. 

I was very fortunate that in addition to having my own family nearby, my mother-in-law, Susan, was able to move in and keep Jason's daily routine going without interruption.  Not every patient has this support; had family not been available, I may have had to find good friends willing to add another munchkin to their brood (then I'd have to worry about getting him back! J).  One thing's for sure; most patients receiving treatment for a serious illness are not physically up to the tasks they normally perform, so even if I had been able to stay at home, I surely would have required help until I was strong enough to do things on my own.

At the time, I wasn't working outside the home, but had I been I would have needed to take a medical leave of absence.  Even Steve had to make special arrangements with his boss to work remotely, since he was required to be with me for the duration of the treatment.  Every diagnosis carries a different treatment protocol, and often a patient can remain at home, and even continue working, but for now I'll share the tips that worked for me during my personal experience.  Whatever your particular situation is, here are a few of the strategies I used to keep myself, my family and my home organized while I was gone without missing a beat!

 1.)  Plan ahead:  Schedule the kids' doctor, dentist and haircut appointments (perhaps one more mani/pedi/massage for you?), purchase birthday presents and attach the party invitation to them;  shop for new sneakers, camp gear, whatever the kids will need while you're in treatment.  We hit BJ's and stocked the house with paper goods, toiletries, pantry items and lunch box staples. 

 2.)  Keep 'em busy:  I wanted to keep Jason's routine as stable and familiar as possible.  I set up a few weeks of day camp, swimming lessons, and he continued his taekwondo program.  I also sent out an "SOS" email to my closest friends and arranged a couple of play dates each week for a month or two after I expected to return home.  Next to every appointment I included the name, address and phone number of where Jason would be.  Once I had Jason's schedule set, I printed out three copies:  one for me, one for my parents, and one for Sue (which I put in a 3-ring binder titled "Nana Sue Control Center").

3.)  Find a body double:  A stay-at-home mom really doesn't stay at home-we stay in the car!  To make things easier for Sue, I arranged as much transportation with family and friends as possible, and tried to create a predictable routine for Jason.  So for example, my mom would bring him to taekwondo every Monday, or the same friend would bring him home from camp every Tuesday.  I filed this schedule in the "Control Center".  Don't forget to tell teachers and instructors who to release your child to on which days.

4.)  Create a manual:  Whether your partner, family member or a good friend is helping out with the house and kids, it's a good idea to put together an Instruction Manual.  Outline the morning routines, typical meals and snacks, favorite lunchbox items; who gets vitamins or allergy pills and when; what do the kids wear to dance, karate, soccer, lacrosse?  What time are meals, baths, bedtime?  What's the homework routine?  The more the routine stays the same, the better.  Don't forget to include a list of emergency numbers such as doctors, dentists, neighbors and favorite babysitters.  List phone numbers for school, camp and other activities in case of absence.

5.)  Cook and freeze:  I did as much meal prep as I could before I moved to Boston.  One weekend, my college roommate came over and we made quiches and chicken pot pies all day to stock the freezer.  I gathered some favorite family recipes, shopped for all the ingredients, then spent a weekend cooking and packaging them for the freezer.  Another great tool I used to stock up was Dream Dinners.  I simply went online, scheduled a session and chose my entrees from the menu.  Then I went to the store and assembled all of my meals for the freezer.  However, defrosting and cooking every night for a month or more can take a toll on any caregiver, even if it is a devoted family member.  I was incredibly touched by the generosity of our friends, as well as those of my sister's whom I had never met, who offered to bring over meals several times per week for Sue and Jason, as well as for the four of us once Steve and I had moved back home.  I found the best way to coordinate this support was through CareCalendar.  I set up a calendar and shared the personal code and password with all of those who offered to help.  Not only could people just click on the day they preferred to drop off a meal, but we were able to log on and find out what was for dinner.  Brilliant!

6.)  Stock up:   Treatment days can be long...and boring.  I chose to look on the bright side and view this month time away as a mini-vacation.  I didn't expect to feel all that well, but what better time to catch up with those books and movies I'd been intending to get to?  I borrowed books from friends, and a bunch of girls made me a list of their favorite movies.  I downloaded some soothing "spa" music to my IPod to help me relax during procedures.

7.)  Delegate:  In the weeks before I moved to Boston, I started training Jason to be a bit more independent.  I encouraged him to dress himself, clear his spot at the table, pick up his toys and put his dirty clothes in the hamper.  He was only 4 years old, but children of any age can learn to help fold laundry, put it away, empty the dishwasher, get the mail, or feed the fish.  And the great thing is, they continue to do these tasks once you are well again!   I took advantage of a grocery delivery service, and asked a couple of great kids on our street to come over just for an hour here and there as a "mother's helper".  Doing too much too soon can delay your healing, so don't overdo it.

8.)  File it:  Nothing creates paperwork like a critical illness.  I figured out pretty quickly that I was going to have to find a way to organize all of it.  I purchased a portable file box and filled it with hanging files and folders.  I created tabs for health insurance, prescriptions, medical receipts, nutrition information (I had to follow a neutropenic diet), lease agreement, treatment calendar, etc.  Even after the treatment is over, the paperwork keeps coming, so this is a good system to put in place early.

9.)  Start fresh:  Any chemotherapy regimen can compromise your immune system, and after my bone marrow transplant, I wouldn't even have one.  I tossed all of my cosmetics and purchased new mascara, lip gloss, eyeliner, as well as new makeup brushes and sponges.  Don't forget razors, nail files, and toothbrushes as well.

10.)  Stay in touch:  Whether you blog, post, tweet, or update, everyone who cares about you is going to want to keep up with how you're doing.  I chose to stay in touch with a simple email.  Set up an email distribution list with all of your contacts (you can even give it a fun title with a good vibe like, "My Fan Club", or "Healthy News").  If I wasn't up for writing, Steve could send an email easily by clicking once on the list.  I recommend selecting the list in the "BCC" line to avoid sharing everyone's email.

I hope you enjoyed this article.  Just in case you missed it, here's a link to last month's newsletter:

Jenifer Recommends
"Recycle Yourself--Become an Organ Donor"

I had an autologous bone marrow transplant, which simply means that I was my own donor.  However, as we know, many patients who require bone marrow or other organ transplants depend on donations to survive.  Amyloidosis can affect any organ in the body, causing dysfunction and eventually organ failure.  Here are some statistics: 

 

*110,000 men, women, and children are currently waiting for heart, kidney, liver, lung and pancreas transplants.

*18 people die each day waiting for organs.

*Only 1-2% of all deaths in the US have the potential to result in organ donation.  However, only 50% of those individuals are donors. 

*One donor has the potential to save and enhance more than 50 lives, and take 8 people off the transplant list.

*Studies show that over 90% of the US population supports organ donation, but less than 30% have actually placed the organ donor designation on their driver's license.

Many of us find it easy to donate our time, money and energy to our schools, communities, and favorite charitable organizations.  Choosing to be an organ donor can be just as valuable.  It only takes a minute - visit http://donatelife.net.

 

About Jenifer

 

In 2007, at the age of 38, Jenifer Gershman was diagnosed with amyloidosis, a rare blood protein disorder which, left untreated, is fatal.  Without prompt and proper treatment, the prognosis is approximately 12-15 months.  In an instant, the fit and active young mother found herself facing a long hospitalization.  To make matters worse, the aggressive treatment would require Jenifer to be separated from her four year-old son, Jason, for weeks.  She struggled with how best to explain her extended absence to her little boy, as well as the changes in her physical appearance and abilities he would undoubtedly notice.

 

At the time, Jenifer searched in vain for a book to help guide her conversation with Jason, but the only books available described conditions different from her own.  As a solution, Jenifer decided to create a book which is not disease-specific, and can be used by any patient, regardless of diagnosis.  Jenifer's book, Where Did Mommy's Superpowers Go?  demonstrates how talking openly and honestly with children in a positive manner when a parent or close family member is critically ill can minimize fear, and enhance understanding.  It is Jenifer's hope that her book will serve as a useful resource for all families facing a similar challenge.

 

Jenifer majored in Psychology and received her Bachelor of Arts from Brandeis University in 1991.  In 1995, she received a Master's degree, with a Specialty in Aging, from the Boston University School of Social Work.

 

Jenifer was treated at the Amyloid Research and Treatment Center at Boston Medical Center.   She underwent two stem cell transplants with high-dose chemotherapy, the first in 2007, followed by another in 2008.  In an effort to raise awareness about amyloidosis, Jenifer's experience was featured on an episode of Mystery Diagnosis in 2008.  Currently, Jenifer is in remission and happy to be living a healthy and active life with her husband, Steven, and son, Jason, in Massachusetts. 

 
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Where to Find My Book

 Where Did Mommy's Superpowers Go? is available at Willow Books & Cafe in Acton, MA, as well as The Paper Store (Acton, Maynard, and Sudbury locations).  If you prefer to shop online, please visit www.tinyurl.com/buymommypower.  If you are already shopping for other items at Amazon or Barnes and Noble.com, you may find it there as well!

 

 

Our Price: $14.95
List Price: $16.95
S & H:      $5.99  

Jenifer Gershman
Where Did Mommy's Superpowers Go?

 

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