Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Dad, I Love You

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Dad holding me. Rosanne & Mick on the porch.

Dad, I love you and do you know why?

Because of that special gleam in your eye,

Which tells me something significant and true:

That I’m an important part of you.

 

 

 

Mom &amp; Dad

Mom and Dad 2014

 

I love you because I know there’s no other,

That you love more than the one I call mother.

I love you because you are always there,

Extending a hand to show that you care.

 

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My first filly, Ginger, a dream come true

 

 

I love you for all the things that you teach

Like nothing I want should be out of reach.

You’ve taught me to work and to save my money

For things that I want to make my life sunny.

 

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Dad riding Chili the mother of Ginger. I love the hard hat he always wore.

 

I love you because you are honest and strong;

You’re courageous and steady when things go wrong.

I love you because in your steps I can trod,

Because I know you’re clearly a man of God.

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2014, One of Dad’s many talents, leading music.

 

Dad, I love you and do you know why?

Because as a man you are never shy.

You’re friendly to everyone you meet,

And as a friend, you just can’t be beat.

 

 

 

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2008, Mark and Dad

I love you because your in-laws you truly love,

Making them fit in the family like a glove.

And with your grandkids you always have fun

With work or rain, but mainly snow and sun.

 

 

Dad &amp; I Snowmobiling

1980, Dad and I

 

I love you for these and so many other reasons;

Thank you for all the joy—no matter the season.

For dancing, camping, horses and snowmobiles too,

Boats, 4 wheelers and swimming, just to name a few.

 

Dad, 2015

2013, Dad on his backhoe

 

 

I love you for being the perfect dad for me.

I value your opinion and your wisdom I see.

You listen while I hash out my crazy ideas,

Then you help me achieve them, I cannot tell fibs.

 

Dad and Mark

1980, Dad & Mark boating

I’m the luckiest gal ever, I know,

Because I have a dad that loves me so.

And I married a man a lot like my dad,

They’re the best of friends for which I’m so glad.

 

Dad, Mark &amp; I

2009, Me with Mark and Dad

 

I love you both and do you know why?

Because as fathers you’re quite the guys.

And because on earth you’re what fathers should be,

I’m blessed to be yours through eternity.

 

 

Joy of DadHappy Father’s Day!

Links to my favorite story’s about Fathers:

My Home Delivery

A Blessed Life

My Two Favorite Men

Dad Creating Beauty After Tragedy, Part I & Part II by Katie Wilson Ferguson

Where to Turn for Help

Pick Yourself UPI appreciate Christine Scott’s series, Laura’s Story, where first she recalls her sister’s birth and slow development and then the impact of her seizures and her battle with cancer. Sometimes the trials and health concerns seem to be never ending, causing stress and fatigue to the individual and the caregiver. In part three Christine wrote, “Yesterday I asked my mom how she did it and she said, ‘You just have to pull yourself up by the bootstraps and take it one step at a time.’ Then she smiled and added, ‘I’m made of good pioneer stock where the fittest survive.’”

Both statements are true, but what if you’re in a slump and can no longer pull yourself up by the bootstraps? I imagine every caregiver has periods where stress, exhaustion and/or depression set in. If those feelings last for an extended period of time, medical attention may be necessary. Stress and depression are treatable disorders. If you want to help prevent burnout, consider turning to the following resources I found on http://www.webmd.com/women/caregiver-recognizing-burnout?page=3#1 for help with your caregiving:

  • Home health services—These agencies provide home health aides and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.
  • Adult day care—These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
  • Nursing homes or assisted living facilities—These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.
  • Private care aides—These are professionals who specialize in assessing current needs and coordinating care and services.
  • Caregiver support services—These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
  • Aging services—Contact your local Agency on Aging or your local chapter of the AARP for services available in your area such as adult day care services, caregiver support groups, and respite care.
  • National organizations—Look in a phone directory or search online for local agencies (such as Family Caregiver Alliance), chapters of national organizations dedicated to assisting people with illnesses such as Parkinson’s disease or stroke. These groups can provide resources and information about respite care and support groups.Light a Candle

 What has been your experience with the above suggestions? How do you prevent burnout? Sharing your experiences in the comment box can help another caregiver.

 

How to Bring Comfort and Support

true-friend-quotationLast Sunday Christine Scott wrote part 1 of a series about her sister, Laura’s Story. She stated, “… what happens when those long awaited milestones don’t happen, when friends and loved ones question your child’s progress, and maybe suggest something is not quite right? When illness and hospital stays become commonplace, how do these parents cope?”

Connecting with someone who is dealing with tragedy or heartache can be uncomfortable, especially if our friend or family is facing something we’ve never experienced. Walls may be raised as a coping mechanism on each side. How do we gently and gracefully break through those walls?

Christine also wrote, “Well-meaning family and friends commented on Laura’s lack of progress, but my mom refused to believe them. Her response: ‘She isn’t that delayed for an eighteen-month-old. She’s just a late bloomer.’ Laura was beautiful. Laura was perfect. She was everything my mom dreamed her to be, so she didn’t listen. Even the family doctor supported my mom’s theory about my sister being a late bloomer. Looking back, my mom admitted she didn’t want to know. She didn’t want to face the hard, cold reality that something was seriously wrong with her baby.”

This heartfelt article made we wonder how we bring comfort and support to family and friends during heartache and trials. How do we know if we are hurting or helping another? Will our advice or opinion give direction or will they resent it? Advice at the wrong time or our choice of words can be damaging to a relationship. With these questions I searched the internet and found, How to Comfort Hurting People and I made a list of suggestions taken from http://www.net-burst.net/help/counsel.htm.

  • Think the best of people. See them in the best possible light. People under pressure can explode at the slightest additional pressure. If you happen to add that tiny extra pressure, don’t take the explosion personally. Do not feel badly about the person or about yourself for what happened.Hold your friend in high regard and know that it is the pain talking, not the real person.
  • Listen intently. Eye contact can reinforce the person’s awareness that you are interested in what they are saying. Be relaxed during times of silence. Perhaps give a reassuring smile or squeeze the person’s hand. Don’t feel pressured to fill the silence with chatter. Have confidence in the comforting power of simply being there. Feel their pain, be thrilled with their triumphs and enjoy their jokes.
  • Regard tears as being as natural as breathing.Give a reassuring squeeze of the hand or by some other means show that you are relaxed about any emotion that is displayed. Assure the person tears are fitting and nothing to be ashamed of.
  • Gently probe.Asking an occasional question shows genuine interest. By asking appropriate questions you confirm that you really want to know and that they are not imposing on you. Of course, there are people on the other extreme who feel offended if asked, so we need to try to raise these matters with gentleness and sensitivity and in a manner in which the person can easily decline to answer without embarrassment.
  • Look for a positive twist to the situation. If every cloud has a silver lining, hunt high and low for it. With great sensitivity, ease the person’s attention in that direction. However,don’t do this in a way that could seem like a put-down, such as giving the impression that they should have seen the silver themselves, or imply they should find the positive side comforting. Leave it to them to decide if it’s the slightest compensation for the pain they are experiencing.
  • Every person is different. What worked wonders for others, could end in disaster despite your best intentions for another. The fact that some people recover or accept a situation far quicker than others can tempt us to give up on the slower ones. Human nature is complex and every person feels and reacts differently.
  • Keep looking for feedback and signs as to adjustments needed in your approach.Not only is every person different, people’s needs change during the course of their ordeal. For instance, when tragedies first hit, a person is often overwhelmed with visitors and attention, but this tapers off until the person is left having to cope with the opposite extreme. Also, be mindful to not over-stay. Make it obvious that you are happy to stay, but ask now and then if they would prefer to be alone for a while or if they would you like to rest now.
  • Don’t be a know-all. Avoid anything that could possibly give the impression of putting yourself above the person. When appropriate, briefly confess you own struggles.
  • Consider practical help, such as shopping, housework, cooking.This may be a valuable way to help.
  • Allow yourself time out to recharge.It is both loving and wise to ensure you have guilt-free fun times. This will do much to keep you primed for doing your utmost in supporting the person. Be mindful, the person might not be in the mood for hearing you describe your fun.

All of us at one time or another will experience grief and devastation. What helps you get through your heartaches? How hard was it to let others in and to accept help? Your comments are appreciated.

Who is the Real Caregiver

“I’m not sure who the caregiver is in this marriage,” Neils said in part 1 of his story, Dancing with Class.

In his part 2, he explains in more detail some of what she does for him. “Her gentle prodding, encouragement and constructive criticism is the gas in my tank. She is the light in the tunnel, the gentle whisper in my ear, my tease, my best friend and motorized mentor who runs over my toes when I get curmudgeonly.”

“Judith has never given up. She always listens to people’s stories and encourages them to fight on.”

I loved Neils closing remark, “My part as a caregiver is insignificant compared to what Judith offers. So, I ask again, who is the real caregiver?”

I  wholeheartly relate and have written about it myself in three other articles.

IMG_0333I’m a full-time caregiver and occasionally I’ve been asked, “Who takes care of you?” Well, I’ll tell you…

Mark is my caregiver. He may not be able to make a meal or do the physical chores of housekeeping or yard work, but he does care about me and gives me support by waiting patiently for me to complete a task before taking care of his needs. He also lifts my spirits with humor, companionship and good times. Being with him is a pleasure. I love his wit and sense of humor. He also gives care through letters, expressing love and appreciation. These letters mean more to me than if he were able to give me flowers.

My parents are my caregivers and have been my whole life. Even though they are well into their eighties, they give me and many others lots of care through meals, visits and sincere interest in what is going on in my life, along with any help or assistance I may need.

My siblings are my caregivers and they too have been my whole life. They are all busy with their own lives and children, but they make time to check up on us. If I ever need anything I always know I can call on any one of them. It’s wonderful to feel the love and support of family!

My children are my caregivers. When they were small it was wonderful to feel their love and admiration. They were sure I could fix anything and no one was stronger. As they grew, experience taught them differently, but their love kept me going. They are my strength and what motivates me to do and be better. Their care is different now they are busy adults and no longer dependent on me, but I still feel their care and love and it means a whole lot to me.

My neighbors and friends are my caregivers. They give with listening ears and a caring heart. They give understanding, support and friendship. They are observant for what they can do to help without me asking for it. I’ve been fortunate to be surrounded by people who are anxious to help. Many times in the winter my snow is shoveled off my walks and I have no idea who did it.

My church provides caregiving. Not only do I find comfort and solace in my church activities, but my association with people there has led to friendships and an organized volunteer program where two people come twice a week to help Mark with his exercises.

So I just have to say, I’m one lucky caregiver. I’m supported by a lot of other caregivers who probably don’t think of themselves as caregivers. But I know they are and I know I couldn’t do my caregiving without them.

If you care and you give, you are a caregiver. If you drive someone to an appointment, prepare a meal, watch children, or go shopping for someone else, you are a caregiver. You may think you’re just doing what anyone else would do—but anyone who helps is a caregiver.

Thank you, Neils, for reminding us of the many acts of service which are considered caregiving.

Who’s your caregiver? Feel free to leave your recognition in the comment square.

My related articles:

What Makes a Caregiver

Six Traits of a Caregiver

No Foolin’, You’re a Caregiver

A Village of Support

Written by, Katie Wilson Ferguson

Last Sunday, I shared how I prepared to care for my dad for six weeks so my mom could recover from surgery, but I wasn’t the only one who prepared for the occasion.

My mom arranged for my stay by setting up a bedroom for me on the west side of their house. She cleaned out another room nearby for my home office. I had the closest bathroom all to myself. I liked telling people I occupied the West Wing. My mom wanted me to be comfortable, and I’m most comfortable when I have my own space.

Before the surgery, my mom’s friend and neighbor Michelle offered to bring food and find other neighbors to bring meals while my mom recovered. Not wanting to be a burden, my mom declined. Michelle texted me with the same offer, and I happily accepted. We had dinner brought in by friends and family for eight nights and many of those meals gave us leftovers for the following lunch. This helped alleviate stress as I adjusted to my new responsibilities. Michelle often checked in with me after my mom’s surgery knowing I would be more likely to accept help if we needed it.

My mom’s surgery was scheduled on a Tuesday morning. I moved in the Sunday before so I could set up my office and be ready for work on Monday, plus shadow my mom for a day before caring for my dad without her help. Although I’d seen her care for him since I was seven years old, it was the first time I watched with the intent of doing it myself.

My Aunt Dianne drove my mom to and from the hospital while I stayed home with my dad. The surgery was successful, but she was miserable with nausea for the first 24 hours. My Uncle Steve came to visit and decided to stay overnight so he could take care of her while I took care of my dad. Just as a harness once secured me to a zip line so I couldn’t fall, my uncle was my harness that night.

I woke up the day after my mom’s surgery feeling more overwhelmed than I had expected. My husband wasn’t there hitting his snooze button. My energetic Jack Russell Terrier wasn’t there sniffing my face to make sure I was alive. She wasn’t there for me to take on a morning walk. I knew my dad was down the hall waiting for me to get him dressed, out of bed and fed.

For the first time in my life, I felt the weight of knowing another person was relying on my care. It didn’t feel like a burden. It felt like going into a job interview. I wanted to be there, but I was nervous I might not be good enough to fill the position and do a good job.

2015, Katie transferring Mark

I got my dad dressed, up and fed. My Uncle Steve checked in on us before leaving for the day. “Did your dad get his pills?”

I slapped my forehead. “No! I forgot! I woke up this morning and realized why I’ve been so nervous to take care of my dad. I’ve never had someone depend on me to get them out of bed or to feed them or make sure they’ve had their pills. I’ve been so worried I’d forget about my dad’s pills. I can’t believe I forgot on the first day.”

“Hey, it’s okay. Take it easy on yourself. You don’t have to be perfect.” Uncle Steve always has a knack for knowing how to make me feel at ease.

Because my dad has a poor short-term memory, he is no longer capable of taking his own medicine correctly. Years ago, he got confused on the day of the week, thinking it was Friday when it was actually Thursday. He saw he had pills left in his box so he took a double dose of everything that day. The overdose caused a two-day hospital stay. Overdoses are dangerous, but so are missed doses. One missed dose increases his likelihood of seizures and blood clotting.

My parents and I felt an outpouring of love for the next several weeks. Family and friends checked in with phone calls, text messages and personal visits. Some loved ones sent my mom cards, flowers and gifts. Not only were people asking my mom how she felt, but they were also asking me how they could help. I’ve heard the saying “It takes a village to raise a child.” I think it takes a village to conquer many of life’s challenges – including caregiving. My parents and I are blessed with a strong village of support.

My full-time caregiving adventure didn’t always go smoothly, but we had a lot more successes than failures. My mom understood when I forgot to give my dad his pills. My dad forgave me when I sat him on the armrest of his wheelchair instead of the seat. My dad’s response to every apology was “no prob.” I heard that response a lot.

My dad’s patience amazes me. I almost dropped him several times while transferring him in or out of his wheelchair. I’d stand him up and start to feel his knees bend and his waist drop before I was ready to sit him down. “Stand up! Stand up!” I yelled in frustration. I hurt him a few times (without causing serious injury). He never lost his patience with me.

My dad is a pleasure to serve because he’s one of the most appreciative people I know. There were days I got tired of saying “You’re welcome.” Then I’d remember it was a blessing to help someone who acknowledged every good deed.

2015, Eldin  Lizzy

2015, Eldin and Lizzy

I’d like to follow my dad’s example of appreciation by thanking my village of support. Without the help I received, taking the plunge of accepting caregiving responsibilities would have been even scarier.

It’s been six weeks since I moved back into my own home. I hear my husband’s alarm clock every morning again. I start each day walking my dog. I went back to my usual routine without missing a beat, but with a deeper understanding.

So, here’s to all you caregivers: You wake each morning knowing someone else depends on you. Who knows how many mornings you’ve had to drag yourself out of bed after a long night of helping your loved one or cleaning up midnight mishaps? Who knows how many times you’ve felt at the end of your rope? Yet you choose to hang on for the person you love.

And here’s to those of you who rely on the care of others. You have to wait for others to assist you day after day. You’ve endured extensive testing and rehabilitation. You’ve been deprived of abilities others take for granted. Perhaps you endure hardships few people understand and maybe it’s difficult to express how those hardships affect you. Perhaps you endure physical and emotional pain no one can heal – yet.

Caregivers and care recipients alike have spent endless hours waiting at doctors’ offices. Together, they’ve experienced unfamiliar territory and anticipated the unknown. Their relationships have been challenged beyond arguments of whose turn it is to wash the dishes and where the toothpaste tube should be squeezed.

You caregivers and care recipients have been given a weight few people have the strength to lift. Thank you for lifting that weight and carrying on. I learn from your examples and admire your strength. I believe you add an exceptional level of beauty to the world. I hope you feel you have a village of support. I appreciate my mom for increasing a village of support through the worldwide endeavors of this blog.

Thank you Katie for your insights and words. I appreciate you sharing your experience and grateful for your help. Thank you Eldin as well. You were a marvelous help when Katie wasn’t able to be here and a great support while she was here. What a wonderful addition you are to our family. We also enjoyed Lizzy and the great cleanup job she did after every meal. I enjoyed watching her wait patiently by Mark’s chair for the food to drop.

A Blessed Life

As I look over my life, which is far from perfect, I recognize how fortunate I am. There is nothing like having a birthday to remind me of how grateful I am for parents who not only brought me into this world, but made many sacrifices to give me and my siblings a blessed life. I honor them today as I share a revised version of My Home Delivery, which I wrote last year.

Mom & Dad (2)My parents were married in 1950 and had their first child, Michael (Mickey) sixteen months later. The following year my sister Rosanne was born. Living with two little children in a one bedroom apartment was hard and crowded. Mom and Dad saved their money to buy a lot for a new home in Murray, Utah in 1953.

Since Dad was an excavator and owned a construction company with his brother, he did most of the work including the foundation, septic tank, concrete and framing. He did hire a plumber, electrician and brick mason for their red brick home. By today’s standard, it was a modest, three bedroom, one bath home which Dad did all the finish work on. They were able to move into their new home about nine months after they started building and just before their third child, Donny’s first birthday, in 1956.

A few years later Mom was expecting their fourth child. Since the new baby would need the bedroom my brothers shared across the hallway from our parent’s bedroom, they decided to finish two bedrooms for Mickey and Donny in the basement. The new bedrooms were the only finished area in the basement, but on the opposite end of the basement was a beautiful rock fireplace. They bought a black and white television and put a throw rug by the fireplace with a second-hand couch and also used folding chairs to sit on to watch T.V. This room would later be finished as the family/entertainment room.

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Mom, Dad, Mickey, Rosanne, Donny, Barbara sitting around rock flower box in front of our Murray home.

On Saturday, June 6, 1959, my mom’s parents came for a visit and to take Rosanne home with them for an overnight stay. They did this often, taking turns with each grandchild. After they left, Mom started having strong contractions so Dad called the doctor and told him they were on their way to the hospital. Because of the pain, Mom struggled to walk to the back door towards the garage. Dad rushed ahead to drive the car out of the unattached garage closer to the back door in hopes to make it easier for Mom. When he got back to the kitchen to help her to the car he realized her water broke and the determined baby was already on its way. He ran to the phone to call the doctor again and heard the television downstairs. Panicked, with only a stairway between my parents and the two young boys, Dad hollered down the stairs, “No matter what, you boys do not come up these stairs!”

Mickey, age seven and Donny’s fourth birthday in just three days, paid little attention to the hustle and bustle at the top of the stairs. Seemingly more interested in the television than the arrival of a new baby, it was easy to obey their father’s order.

By the time the doctor got to our home I had already arrived. What an entrance for a nine pound baby! I wish I could remember it… What I do remember is being referred to as the “kitchen baby”. Sometimes I was amused at the thought of coming into the world in this unusual way, but other times I was completely embarrassed.

Dad had always teased Mom during their four pregnancies that he had delivered lots of calves on the farm, so there was no need for a doctor. I guess I was listening. I’ve always had lots of faith in my Dad’s abilities. However, he stopped saying that after my birth.

I later learned the home delivery resulted in a three day stay at the hospital and I came home on Donny’s 4th birthday. I don’t believe I was his only present that year, but he always made me feel like I was his best present.

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Dad holding me with handsome brother, Don in the left bottom corner.

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Dad holding me with Rosanne and Mick on the front porch.

I’ve always considered myself a daddy’s girl and Mom often said I had Dad wrapped around my little finger because he was there for my birth. I was the only child out of their five that he witnessed because at the time fathers were not allowed in the delivery rooms at the hospital.

Twenty-two months later Mom delivered one more baby, my youngest brother, Steven. Because we were the closest in age we shared the upstairs bedroom for several years and had lots of fun playing together. See Siblings by Chance, Friends by Choice.

Me at two years old loving my stuff animal.

Me at two years old loving my stuff animal.

In my elementary years while we were on vacation at Disneyland, I vividly remember begging my dad to buy me a big stuffed animal. “Dad, think of the money I saved you by being born at home,” I pleaded.

“You were the most expensive child!” He replied. “At the hospital I had to admit not one, but TWO patients. You were considered contaminated by being born at home so you were not allowed in the nursery. They kept you in isolation for a few days, which was an added expense.”

Not only sadden by the fact I wasn’t getting the large stuffed animal, I was shocked by his reply. I previously thought I had saved my parents from the whole hospital scene and therefore was some kind of super hero. After all I had been called the kitchen baby by family and friends. Wow, what a blow this information was to me and an indication that I didn’t really have my dad wrapped around my little finger after all—at least not this time.

Now that I’m older and have gone through child bearing  and raising myself, I appreciate what my folks went through to get me here. I even feel a little guilty for being so impatient and determined. These traits I’ve carried throughout my life and they’ve loved and supported me anyway. They are the most giving and caring parents and grandparents I know. I’m blessed to be able to call them Mom and Dad. It’s been a wonderful life, thanks to them!