This week’s Featured Mama of the Week is Jean Marie Keenan-Johnston, a mom to two little girls; one is almost four years old and the other is two. Jean Marie was employed as an eighth grade teacher at a charter school until she became disabled and was later diagnosed with fibromyalgia.  This past spring, she was also diagnosed with breast cancer.  She blogs about her life experiences with her disability and illness at We Vow for Worse or for Worse, sharing what life is like living with disabilities.  Jean Marie was gracious enough to share her story with Mama’s Little Helper despite being a few weeks post double mastectomy surgery and just days post hernia repair surgery!  She is an amazing woman and mother, and this is her story, mostly in her own words.

Jean Marie Keenan-Johnston and her daughters

Jean Marie and her husband went from being newlyweds to expectant parents in a matter of days and were very happy about it!  Starting a family was very exciting for them.  They now have two beautiful little girls who both enjoy singing, dancing and music, playing dress up and being crafty with mom.  Sharing hobbies and interests with the girls is something that Jean Marie really enjoys about being a parent.  While she would encourage them to do whatever activity they found interesting, she loves that they both enjoy craft activities, even if the youngest isn’t quite ready developmentally to participate all the time.  Being a teacher and a mom helps Jean Marie in providing educationally appropriate activities for both girls.

Being a stay at home mom due to health reasons has also been a blessing.  Jean Marie is grateful to have time at home with her girls while they are young.  She said, “it may create lots of limitations for my family when it comes to income, but I prefer to look at it as a blessing since it gives me the opportunity to watch my children enjoy their childhood and reach each and every special milestone, something I would have missed out on if I was teaching other people’s children instead.”

Regarding handling challenges as a parent, Jean Marie shared the following:

Until recently, my greatest challenge was my disability, fibromyalgia.  I was diagnosed when my daughter was eight months old, over a year after my symptoms started during my first pregnancy.  Fibromyalgia took away a lot of my independence, endurance and stamina as well as qualities that made me the kind of teacher I was proud to be, such as excellent reading comprehension, grammar and spelling, a good memory, strong organizational and problem-solving skills, and the abilities to multi-task and quickly change my course of action when the need presented itself.  As a mom, I had to find ways to do things differently.  For example, diaper changes were done only in the living room to reduce the amount of lifting that needed to be done. When my oldest was 10 months old, I was no longer able to take her (and later her sister) out without help as I was unable to get her in and out of car seats, high chairs, or strollers without difficulty. I found I was only able to drive short distances from my home. My ability to do housework was greatly affected too, and many days cooking dinner was impossible.  So my husband and I had to find ways to work around my difficulties.  Unfortunately since my husband doesn’t know how to cook very much, we relied heavily on takeout or easy-to-prepare meals on the nights I couldn’t cook, but I did my best to be sure we had lots of healthy foods in the house to balance it out.  Routines were created to work around my limitations, and we had to rely on family, friends and other helpers to help get the girls and me out of the house for fun.  It was only recently that I was able to take my oldest out with me for easy errands because she’s now old enough to help get herself in and out of the car.

Once the cognitive dysfunction set in, I realized I couldn’t keep this condition to myself.  I was starting to upset newly found friends by misspeaking, and my memory problems were affecting my relationships as well.  I didn’t want to upset others by canceling plans with little explanation.  So I made a very difficult decision to share my condition with others so they knew all the personal faults that come with it and can understand why I need to say no so often as well as why I’m the sore, tired self I become after a very busy day with them.  Some activities put me out of commission for several days, so I had to figure out what I could do and what I needed to say no to in order to be able to care for my children afterwards.

This past spring, after dealing with fibromyalgia for about 3 1/2 years, I was diagnosed with Stage 3A breast cancer.  I’ve been hospitalized three times, had three surgeries and two transfusions, and completed six cycles of chemotherapy.  I still have two surgeries ahead of me as well as six weeks of radiation that will require daily trips to the hospital.  While my chemo is finished, I still need Herceptin treatments every three weeks that will be completed next May.  I’m also starting Tamoxifen in the coming months.  Cancer has been a huge hurdle for me as a parent.  I’m lucky enough to have a great support system.  My husband is a teacher, so he was able to be available the entire summer to accompany me on my treatment appointments.  When he wasn’t available, my father took me.  This was extremely important to me because chemotherapy caused my fibromyalgia to flare badly, affecting my ability to drive even more than usual.  My mother lived at our house for days on end to care for my children and help me get through the tougher days of side effects.  Friends and family took my children for full days of play date fun or they dropped off dinners for my culinary-challenged husband.  My Facebook page has been covered with supportive comments and prayers for my recovery as well as wishes of strength for my family to get through this!  I haven’t had one day that I felt alone during this journey! However no matter how many friends and loved ones tell me I need to put myself first in this fight, as a mother it’s been probably the toughest part of this fight!  I have a very strong caregiver personality which explains my desire to go into teaching as young as fifth grade.  This whole time I have been very concerned about how my children are getting through all of this.  Their very limited social life (due to my disability) seems even more reduced.  I’ve seen evidence of their difficulty dealing with my many “disappearances” due to treatments, surgeries and doctors’ appointments in their behavior.  My oldest is still having problems completing her potty training, and my youngest has had problems at different times with separation anxiety when I leave.  But we’re all just dealing with everything the best we can, one day at a time.  Cancer can impose stress on pretty much every aspect of life…financial stresses as we deal with greater medical expenses and the need for even more help than usual; fear of the unknown as I start each new step in the treatment process; physical and emotional stresses as we all deal with the side effects of treatment, whether it be me suffering the side effects, my husband acting as my caregiver while trying to work full-time and care for our children, or my children trying to figure out as a toddler and preschooler what’s going on with Mommy and why is she still too sick to spend time with us.  Those who care about me tell me everyone else is doing just fine and I should worry about me getting better, but I don’t know how to stop worrying about those I love.  I’ve fought for over four years to attain a balance with fibromyalgia, and I’ve been unsuccessful.  Having cancer isn’t going to just magically make “balance” appear.

My fight against both cancer and fibromyalgia is far from over, but I know I’m not in this alone!!!  I am forever grateful to my husband, my parents and other family, and my friends for all the endless love and support they’ve shown me!  They’ve done everything within their power to take away added stress so I can focus on winning the fight of my life.  And they’ve been working hard to give my girls the childhood they deserve despite the obstacles Mommy’s health has imposed.  I’m very blessed, and for that I’m thankful!

Jean Marie Keenan-Johnston

Through everything medically Jean Marie is dealing with, she is still parenting her daughters to grow into healthy, strong, and kind people.  She wants her daughters to understand the importance of standing strong for oneself.  Through everything she has experienced in the past four years she said she has “learned who my real friends are, I’ve learned how to be my own advocate when it comes to finding answers, and I’ve learned I have an inner strength I never knew I had.  I knew I was strong, but I don’t think I’ve ever known the true strength and optimism I was capable of until I really had to open my eyes wide enough to see it!  I want my daughters to see how hard I fought to be well so they can know how to do the same if their lives ever call for it.  And I want my daughters to also understand why I have shared my story with others, in the hopes of showing others they’re not alone in their fight!  Just as important, I want them to see how love helps pull you through tough times and how when you love someone you do your best to stand by their side and help them find the strength they need to overcome.  While I did have a huge support system while battling cancer, there were some who I never expected to completely disappear from my life.  I want my daughters to learn that’s not acceptable…you don’t do that for people you love who depend on you.  No matter how busy you are or how tough it may seem to remain strong for them, you stand strong by the side of your friends and family when they need you.”

Thank you Jean Marie, for sharing so much insight into parenting while dealing with disabilities and medical issues.  Mama’s Little Helper wishes you and your family well during your healing journey!

Jean Marie Keenan-Johnston and her family