A Better Today

For decades, Decoration Day was observed on May 30. Businesses closed their doors to honor and decorate the graves of the American soldiers who had lost their lives in battle. It wasn’t until 1971 when the Uniform Monday Holiday Act passed, declaring Memorial Day to be observed on the last Monday in May in order to create a three-day weekend to honor our fallen soldiers. While the federal holiday isn’t about the start of summer, it has evolved into that over the past forty-five years.

May is also the month of graduation for many students and for many more it’s the end of a school year which adds to the excitement for the beginning of summer. The anticipation for summer activities and vacation brings some level of stress to most families and when you have a family member with special needs, the anxiety level may increase. Physical, mental and financial limitations can bring disappointment and frustrations when family time doesn’t work out the way we’d hoped.

Often the demands and responsibilities weigh heavily on just one person. Possibly without even realizing it, all of the caregiver’s attention and energy is directed on the one person who seems to have the most needs. However, as Christine reminded us in Laura’s Story, Part 7, there are others who need our care and devotion. As a caregiver, how can you meet the needs of the one with disabilities and not neglect your other loved ones? It’s a very difficult balancing act.

My children had a wise elementary school counselor who was concerned about their needs not being met after our tragic car accident. She recommended I spend some one-on-one time with each child weekly. Following her advice, I took turns taking one child out for ice-cream, bowling or some other activity while the other child stayed home with Mark for an hour or two. At the time, it seemed like a lot of effort on my part, not because I didn’t want to be with them, but I worried about Mark and the child left at home. Although I regret not being able to be more carefree with my children, I treasure the memories of the one-on-one time I spent with them.

In Laura’s Story, Part 6, Christine reminisces about their trip to Disneyland and another fun day at the local amusement park, Lagoon. This article reminded me of the importance of taking time to play with our families. As a caregiver it’s easy to feel like you don’t have the time or the money to do so. However, good memories are important for building a strong family, one that can withstand hardships.

Including Mark, even with his limitations, we tried to continue our summer traditions of barbeques, camping, roasting marshmallows over a campfire and a summer day trip to Lagoon with our kids. We also took a few extended trips over the years to Washington and Arkansas to visit parents, sisters and grandparents. Every outing was much harder and required more planning with Mark’s disabilities. I remember the stress of preparing to leave the house and feeling like my energy was completely drained when returning home from these family activities. However, my efforts are rewarded by good memories that far out-weigh the difficulties. Now that our kids are grown, I cherish those times more than I thought possible. I now realize the benefits of taking a break from our everyday responsibilities and the impact it had on our family’s well-being.

Memorial Weekend is more than looking forward to the start of summer and creating family memories. It’s a time to remember those who gave the ultimate gift. In their honor we should pursue peace and happiness. There is no better place to start than within our own families and building meaningful experiences.

Thank you to all the American military who died in wars fought for our freedoms so we could have a better today and tomorrow.

Please feel free to add any soldier remembrances or ways you’ve created worthwhile family memories.

Laura’s Story, Part 7

Written by Christine Scott

Christine

Everyone is familiar with the pop song, Stronger (What Doesn’t Kill You) by Kelly Clarkson.  I’ve heard the quote, “what doesn’t kill you makes you stronger” repeated a lot over the past few years. I don’t know if the popularity of the quote came from the song, but I’ve decided to make it my mantra as I approach the very difficult topic of sharing my adolescent and teen years with you. Since the fact I’m here writing this, I’m living, breathing proof that those years didn’t kill me—so I must be stronger.

In many ways I was a normal adolescent girl. My hang-ups were typical. I fought with my mom. I felt awkward. I wanted to make friends and find a boyfriend. I liked all the popular music and wanted to dress in the current brands. I wished I was prettier, funnier, and more popular. I didn’t know my talents. In a lot of ways I was lost—similar to many other kids my age.

Laura

However, I had a mentally disabled sister I didn’t want others to know about. I’d moved past the point where she was my sister and I’d stick up for her—my reputation was on the line. I was afraid if someone found out about her they’d think something was wrong with me too.

I remember my sister chasing me down the aisle at Harmon’s grocery store and pulling my hair. I remember the humiliation. I remember feeling that maybe it was my fault for not standing up for myself. My brother was bigger than her and she didn’t pick on him like she did me. Should I have been more of a fighter? I’ve always felt like I should be more of a fighter. That I’m too weak, that I let others take advantage of me. And maybe I have.

But I suffered a unique form of abuse—one you don’t hear about. One that doesn’t have a name or a definition.

It wasn’t until just a few years ago that I realized I was an abuse victim. I suffered abuse at my sister’s hands and neglect from my mom’s failure to act in a way that protected me. I realize my mom was overwhelmed with Laura’s behavior problems, but it wasn’t until later she sought help by medicating Laura—and I don’t understand why she waited. I do remember her saying that Laura was so sweet mannered at school that the teachers and whoever else she sought help from, didn’t believe her about the behavior problems at home. Maybe if my mom had a support system, maybe things would have been different.

Laura

Laura ruled the roost at our house. Mom did everything to appease Laura. From letting her watch the shows she wanted to Mom staying home from work or whatever outing we’d planned when Laura was having an “off” day. She didn’t expect her to do chores or respect the needs of others. Mom’s coping strategies allowed Laura to have terrible tantrums, which were often focused at me.

To keep the peace, my mom told me to go to my room. If I was out of sight, Laura didn’t torment me as much. From my alone time, I learned to love reading and I read a lot of romance books. I became an introvert, which isn’t necessarily a bad thing.

The worst part was the important interactions I missed. Family time. Time spent with my mom teaching me and believing in me and my abilities. I wish my mom would have made more time for me instead of taking the easy road with disciplining Laura. I wish she would have made time for herself, for friendships, for exploring her own talents and interests. Maybe if she had, she would have expected more from Laura. Maybe she would have disciplined her so our family could have been more functional.

But these are only wishes for a different outcome. To be healthy in this life you have to take what you’ve been given and make the best of it.  In retrospect, I wouldn’t trade growing up with Laura. The experience gave me insights I wouldn’t have had otherwise. It’s led me down the path to become an occupational therapy assistant so I can make a difference in situations such as these.

And there’s the proof that I am stronger, but what’s even better—I found a way to thrive despite the challenges I’ve faced.

Thank you, Christine, for being a guest author. I enjoy reading your insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to mental and physical health disability. I imagine there’s others who can relate and have been neglected due to the main caregiver’s extreme demands. I’m sorry you were one of them.

For me, as a caregiver, this article spotlights the importance of respite care. Time away from the problems can clear the vision. However, it’s hard to find people who qualify or are willing to take care of the needs of our loved one while the caregiver gets that much needed break.

For our Tip next week, we will brainstorm and list some ways a caregiver can find the help needed for some time to refuel, recharge and be revived.

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3, details of Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days. Part 6, illustrates the importance of building fun memories with our loved ones, which can ease the grief of losing them.

Laura’s Story, Part 6

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3,  Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days.

Christine has agreed to share a few more insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to health issues and concerns.

Written by Christine Scott

Christine Scott

To be honest, I want to be finished writing Laura’s Story—and I don’t want to dwell on the next segment because it was such a difficult time in my life. When sitting down to write this, the sadness and loss makes me tired. At this point, I wish the story took a happy twist and I could report on how we all lived happily ever after. However, this story isn’t one of my works of fiction and processing the hardships I experienced is an essential part of my recovery process. Not to mention—many of you have expressed your interest in finishing the story and I don’t want to let you down.

We lived with my grandparents for six weeks after my dad died and then we moved into a rental house around the corner. My mom wanted to stay close to her parents so she could lean on them and have help raising us.  My fondest memory of this house was the crab apple trees planted in front. My grandma would have me pick the crab apples, and then she’d make the best jelly out of them. However, I struggled with the move. The kids at my new school weren’t as friendly as in Morgan. And the kids in the new neighborhood openly made fun of Laura, which didn’t seem to happen as much in Morgan. I missed riding horses with my friend and the bike rides from one end of the Morgan valley to the other. I dreadfully missed living in a small town where there were wide open spaces and next to no traffic. I still do. Some things you never grow out of.

About a year after my dad died, my grandma was hospitalized for pneumonia. After she was released, my grandpa had a minor heart attack and was hospitalized.

A few days later they were getting ready to release my grandpa from the hospital and when my grandma and mom arrived to pick him up, they discovered he had sustained a major heart attack. When the hospital staff approached my grandma to sign the paperwork to treat him, she collapsed. My family always assumed she had suffered a stroke. She was admitted to the hospital.

The doctors operated on my grandpa and put in a pacemaker, but his heart was too damaged. He passed away a few hours later. Grandma was unable to attend his funeral due to her hospitalization.

Laura Hill

My mom had moved close to her parents for their support, but within a short year, the situation had reversed and she was the one helping them. Mom rose to the occasion and pulled through even more challenges—once again proving her strength and resiliency. Much of my baby brother’s care fell to me. Laura had reached puberty, which threw her seizure medications off balance so she started having seizures again.

A few weeks ago while reminiscing with my mom about this time in her life, expecting to hear about her struggles, I was surprised by her positive attitude. We discussed the family trip we took to Disneyland shortly before my grandpa died. It was a trip my parents had planned to eventually take, but with my dad’s business struggles there had never been enough money. At this point my mom’s financial situation had significantly improved due to the royalties she had received for my dad’s hang glider plans. So she decided it was time to take her dream vacation to Disneyland. My grandpa didn’t want my mom to go alone, so he and my grandma accompanied her.

My mom packed us all up in her Ford Granada and we headed to Anaheim, California. I remember being excited about staying in hotels and swimming. I loved Disneyland and was completely disappointed when grandpa insisted we leave before dark. My mom loved this trip. It is one of her fondest memories of my grandparents.

Speaking with her about the Disneyland trip made me remember the trip my family took to Lagoon on the Sunday before my dad died. It was a mild fall day and the lines for the rides were short. We were able to go on our favorite rides as many times as we wanted. My dad was attentive to my family and mom was happy. It was day I wished would never end.

As I relived these memories with my mom, I realized that these times we have with our families are precious gifts that transcend the challenges and heartaches. It is when we are together and for a brief time, when life is in rhythm and we feel at sync with the life around us. These moments are beautiful gifts and evidence of Heavenly Father’s hand in our lives—and when remembered—outweigh the grief.

Thanks Christine for sharing another segment of your life with Laura and your family’s caregiving trek. When I read this article, the importance of taking time to play with our families is what stood out to me. As a caregiver it’s easy to feel like you don’t have the time or the money to so. Good memories are important, as you have so eloquently described. A break from responsibilities is essential for the family’s well-being. I’m grateful for the reminder.

 

Sunrise Sunset

1986- Katie, Mark and Christopher

It’s an old familiar expression, but it really does seem like yesterday when my children were small. On those hard days, I remember worrying if they’d ever grow up and be responsible. Then they did. I thought it would be a joyful day when they were no longer dependent on me. And it was in a sort of sad way because I realized how swiftly those days flew.

It sounds strange when your adult child says, “I need to go home” and they are no longer referring to the home you provided for them for so many years. It’s feels weird when a doctor walks past you to give your grown child’s surgery report to their spouse. It’s rewarding to see how well they manage life without you, but there are times when I really miss being needed and feeling their loving arms around my neck in a tight squeeze and slobbery kisses on my cheek. These are memories I will cherish forever.

June 1991, first picture with the kids after the car accident.

I see excellent mothers all around me. I can’t help wishing at times I had their patience or was more playful with my children. I regret the weight of responsibility which I let weigh me down. I’m disappointed I wasn’t more carefree. I worried about money and not having enough of it. When I compare myself to others, I feel inadequate and remorseful even though I realize each circumstance and situation is different. I know I did the best I knew how at the time and see that my two children have grown into wonderful adults. I still wish I would have done better while they were in my care.

It’s hard to let go because of all the energy, time and emotions put into the role of motherhood. My biggest desire is not only to be a good caregiver and companion to Mark, but also to be a good mother. I have spent years and probably all of my adulthood trying to improve my skills to fit that description. I feel blessed to have so many great examples of nurturing women all around me. I learn and am inspired by them.

 

2006- Mom & I

A few things I learned about my mother after I became one:

 

Motherhood was physically draining until I reached a level of being able to care for myself.

She sacrificed a lot of time and money for me.

Perhaps she had better things to do than driving me to dance lessons, school and other activities, but she didn’t complain about it.

She probably didn’t enjoy my piano practicing any more than I did, but she wanted me to improve so she insisted on it.

As a teenager, I was emotionally draining, causing many headaches and heartaches.

She will love and care about me no matter what. Her unconditional love is greater than most other relationships.

She wasn’t always right, but neither was I.

It doesn’t matter how old I am, I’m still her baby.

Possibly she will spend all her days wanting to protect me from mistakes which may cause physical and/or emotional pain.

I’m fortunate to have a mother who cares. As I’ve matured, I realize not everyone is so lucky.

Happy Mother’s Day to all the women who give so much care to others. I appreciate your examples.

I love being a mother to these three.

2014 – Christopher

2016-Katie and Eldin, my bonus son-in-law

 

 

 

 

 

 

 

I hope you enjoy another one of my favorite songs.