My Mother's Heart
My mother passed away on December 23,1998. Her life had been quite remarkable, really. Having been born on December 7,1938, she was born with a congenital heart defect called, "Tetrology of the Fallot." During those times, children born with this defect were not expected to live long and if they did, it was said that they would not be able to learn. The doctors told her parents to let her live close to the earth. As a toddler beginning to walk, she would do what is now known as,The Blue Baby Swat". She did this instinctively to enable her body to redirect blood flow. Though this little child's mind didn't understand, God gave her body the instinct to do what it needed to do-stay close to the earth...
My mother at the age of two with an older sister.
My mother lived to the age of 60-the oldest with this defect to our knowledge, and she did do quite well in school. My grandmother home schooled her up to the fifth grade. She then had her first heart surgery to repair holes between the valves, and then went on to public school. She lived a relatively normal life during her high school years, married and had a child.{me}
At this time her health began to deteriorate, so my life growing up was different in that I spent a large part of my time with my grandmother. The two of us took care of Mom physically and emotionally. My grandmother and I sat through three showings of Snow White when my mother had surgery when I was six. See This 1965 newpaper clip about my mother Mom and I did not have the usually mother/daughter relationship due largely to her health issues. My mother was a pioneer in the field of such heart defects. Each time she had a surgery or procedure, they were in their maiden stages, so the future was uncharted territory. When she had her first surgery in 1949 at the age of ten, called, "The Pott's Procedure" she was one of the first few to have it. Other surgeries followed and life for my mother was a life of doctors and hospitals. Her second home was the Children's Hospital in Boston Massachusetts.
In 1988 she had a new device implanted in her. It was an internal cardiac defribulator which would shock her heart back to rhythm when it raced out of control. This was a scary adjustment for her. That,along with a pacemaker and endless medication, her difficult years found her hedged in more and more.
She had been diagnosed in 1981 with depression, and in her final fews years the depression became her greatest enemy. In the end, even her living faith seemed frail in the face of this tremendous "demon." During the summer of 1997, she moved to Pennsylvania to live with us. Our home is large enough that we were able to create a mini-apartment for her. We were able to give her two rooms. One served as a livingroom/bedroom combination with her bed, tv, computer and all the comforts. The other served as a mini-kitchen with appliances, though I did all her cooking. We were fortunate to be able to do this because it gave everyone their own space. By this time we had already lost her behind the veil of depression and it was agonizing to watch and cope with. But, God was merciful and brought a little glimmer of contentment to my mom. She found a congenital heart defect support group on the internet after we got her set up with a computer, and when she couldn't open up to us, she could open up to them. For that I am forever greatful. You can reach this group by seeing, A.C.D.A.A special thanks to Karen Klein for be-friending my mom.
On December 9th 1998, two days after her 60th birthday she went through her final heart surgery, replacing her heart valves with pig valves. She was recovering quite well from that when on December 11th, she had a stroke and underwent life saving brain surgery. Though disoriented for a time, she recovered quite well from that too.{Note: Dec.11th was also the day my sweet grandmother found her way to Glory}
At this time she was in the Hershey Medical Center in Pennsylvania and returned to our home city three hours away, to our local hospital for a few days, or weeks, in rehabilitation. I spent the afternoon with her making plans for Christmas and her home-coming, and it was then that I told her about her mother's passing. But the next morning I received a phone call from the hospital and they said that I needed to come immediately. I really wasn't alarmed, thinking that they had gotten her up early and she wasn't quite up to cooperating. So I gathered up the things she had asked for me to bring in, and traveled the three blocks to the hospital.
To my shock they were working on her when I got there. She had stopped breathing. She came to one time and she knew I was with her. But after 70 grueling minutes she slipped into Glory too. {I hope} Apparently she had a blood clot in her lung. Her heart did not fail.
In spite of the emotional ups and down and the tremendous spiritual trials, my mother acquired great knowledge concerning this field in medicine. She had been working on a book about her life as a congenital heart patient,and it had reached a publisher that was working with her to finish and publish this book.There are still plans to finish and publish, though the plans have been changing and it will be publsihed in a different way. Recently a book was published by this publisher in which my mother wrote the introduction. You can find the book called, "The Heart of a Mother" at Baby Hearts Press.
Her knowledge and research in this area was impressive, and it was my mother. Her heart defect was her identity and that caused her to be hedged in even more.
But, since her death, I have been able to look behind that hedge a bit, to a life I still don't fully understand and this was something I heard quite often when she was living. But,I understood quite well what it was like to care for someone who was both physically and emotionally disabled and the heartache that came with it. I have learned that it was ok to get discouraged and frustrated. I also learned that you can't change things for that person, just be there for them...And sometimes that isn't enough for them and you have to accept that. My mother, in her own way, was a courages person. She endured many procedure and found hope in medicine and knowledge. She took it upon herself to know everything she could about her condition and care, and for that reason I know her book will be helpful to other's with similar problems.Look for it in the future called,"My Search For Freedom."
But, the purpose of this page is to offer support to those who have been the caretakers who at times have felt helpless to make the difference. As onlookers, we agonize to see the suffering, sometimes hopelessness ,and depression. Sometimes our own lives get neglected and pushed back to the back burner. Our situation was no more or less difficult than other's. Our family was and is still growing with 4 of our 5 children still at home.{We home school} Trying to meet everyone's needs and still care for my mother was endless, and it seemed like it never got done right.I felt guilty if I took time with my kids because with her severe depression she simply couldn't understand. I knew that her life and emotions were caught in a rip tide that was so far removed from the buzz of family life all around her. It was impossible for her to enter in and I was kept running between these two levels of life. She was facing the wintry sunset of life, while we were in different phase. Caught up behind her hedge, even the normal laughter of special moments fell on her with great offense and we were all helpless to draw her in. So, if you have found yourself in a similar situation, be encouraged. Your best IS good enough. Just be compassionate, and consistant.
It is important that you take time to replenish your own resources or you'll find yourself facing burnout like we did. We did get to a point that we decided to find someone or something to help us with transportation. The first 6-9 month, I found myself constantly on the road and in doctors offices. Being needed to school my children at home made this a tremendous hardship. One that I would happily do for my mother, but not at the expense of my family. So compromise had to take place. Although my mother was not comfortable with having someone else drive her,I explained that I would not make a choice that I believed would be harmful in any way. It would not happen all the time. There would be more times that I would take her myself, than not. It never set well with her, but it was something that had to be done. We also enlisted the assistance of a caring pastor from our church who would take the time to sit and talk with her. He helped show her that our decisions were not ever uncaring decision, and that was important for her and us.
I believe deep down, my mother {or your family member} did know that we loved her and wanted the best for her. But, everything coming into her and going out from her,went through the filtery veil of depression.
When folks grow older and find themselves in the care of their children, they are often times very needy, and that's ok. We do have the responsiblity of honoring our parents and providing for their well being. It may not always be best for them to live with you, so don't feel guilty for choosing another option, as long as they are in good hands and you are closely involved.
Another issue concerning this phase in life is the role reversal. After a life time of respecting that parent as the authority and in most cases, your caretaker, the roles have been reversed. You are now the caretaker and often time you must become the authority. Awkward is a mild term for this. The caretaker knows that they must take over in much of the decision making and it is not an easy or comfortable task. Often time, in our situation my mother, in frustration, would tell me not to treat her like a child, and in my frustration I would say,"Stop acting like one." But, I can say beyond a doubt, I tried in every way to maintain her dignity while stepping in as needed, and most children do.
So,if you are caring for an elderly or disabled parent, child, sister, brother or whomever it may be, again, your best IS good enough.....
PLEASE FEEL FREE TO CONTACT US HERE AT HEAVEN BOUND MINISTRY @ heavenboundministry@christianemail.com
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