Extra tablets for your birthday….

Tomorrow, on the 31st of August, we will once again celebrate Vic’s life! Every year, for the past 10 years, we expected it to be Vic’s last birthday. Today I know that Vic will live forever. She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!

Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extra Jurnista into tomorrow morning’s tablets. Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain….. My gift to Vic an extra tablet so she can a better day.

So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.

I would pray for adequate pain relief. I would pray for some quality of life time for Vic with her boys. I would pray for Vic to have financial independence. I would pray for Vic to have peace of mind. I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.

I do thank God that Vic is still alive. I thank God for Dr Jabber Hussain and Jurnista. I thank God for Vic’s incredible boys. I thank God for the brave decision that Vic made not to have further surgery. Above all, I thank God that Vic is home.

Tomorrow Vic will have a busy day. She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us. I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.

What is a relatively quiet day for us is a marathon for anyone as ill as Vic. I know that she will try so hard to survive the birthday and the party day. Somehow I don’t think she will manage it all. I just hope that she has a good day so she can spend some constructive time with her boys. They will need to remember this as a good birthday in years to come…..

On Saturday we will celebrate all the August/September birthdays. Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September…. I hope Vic will be able to handle two busy days in a row. Maybe the birthday high will carry her through it!

We have a family tradition of doing “birthday eulogies”. Everyone present gets to say something nice about the birthday person. Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is. This year I will I will merely thank her for being here!

Everything else has been said.

Alberton-20120830-00831 — Happy birthday baby!

Tapestries of Hope

What a wonderful caring community I have entered. I occasionally get a personal email from someone, who read my blog, and has a special word of encouragement for us as a family. I truly appreciate it.

I find that I am constantly coming back to my blog and emails so see if there is any new advice or message. I may be developing an emotional dependence upon the support I am getting from the blogging community….

I am re-posting an email that I received today from Alison of Tapestries of Hope. ”Tapestries of Hope is a central New Jersey non-profit dedicated to honoring each woman in the community who is grieving the death of her mom or mother figure. Tapestries was created to provide a peer supportive environment for women to express their grief through workshops, support groups, expressive arts, and programs for continued healing.” I was reduced to tears by her loving, compassionate email. I want to share the compassion that we have been shown. I was so concerned about baring my tattered soul to the world that I was hesitant to start the blog…It is the greatest thing I have ever done.

Alison, thank you for your kind words. You how no idea how “bruised” and isolated I felt today, Thank you for showing me that you care and that there is a caring world out there – even if only in cyberspace! Thank you for taking the time to write me a personal email. You are a special lady!

Hi Tersia,

Forgive me for not emailing you right away. I’ve been reading the blog you’re keeping as Vic goes through her illness, and I’ve been touched beyond measure as I read of her struggle, yours, the joy, the roller coaster of emotions. And it took my breath away to listen to the song you dedicated to her “Never Alone”. One of the events we sponsor here at Tapestries of Hope is our yearly pre-Mother’s daygathering, called “Our Moms, Our Memories” and that is the song that one of the daughters sang two years ago.

I worked in hospice for many years, and our current president, Alisa, works at one now, as bereavement coordinator. I don’t know how hospice is in your part of the world, but I’m a strong proponent of it. It makes an impossible time just a little bit more manageable, and I hope your Vic, and you, will make use of it when you decide the time is right. My sister and I called in hospice for my 36 year old brother, Kysa, when he was ill with cancer, and again 6 months later when my mom, Betty Catharine, died of breast cancer. It was my experience with them that led me, ultimately, to work for hospice and then found Tapestries of Hope along with Alisa.

There are no words that I can give you that will make any of this better, but I want you to know that I understand your wishing so desperately for your mom to be here with you now, to listen, to help, to be there for you. My husband Chuck went through a very aggressive cancer last year (thankfully he has a clean bill of health now) but through it I wished for nothing more than to be able to call my mom and know that, even if nothing changed, I would feel better after speaking with her.

If you would like to connect with other daughters who have grieved their moms, I can put you in touch with so many. We have well over 200 daughters who make up Tapestries, both locally in NJ and around the country. We have a facebook page also, and you can find so much support there. Just type “Tapestries of Hope” into your search engine, and you will find us.

Whatever I can do to offer support to you as you find your way through this, please reach out. I’m very approachable and spend so much of my time chatting with daughters and emailing back and forth with them.

Please stay in touch when you can~

Alison,
daughter of Betty Catharine
Founder TOH,Support/Outreach

Tapestries of Hope

I am re-posting an email that I received today from Alison of Tapestries of Hope. “Tapestries of Hope is a central New Jersey non-profit dedicated to honoring each woman in the community who is grieving the death of her mom or mother figure. Tapestries was created to provide a peer supportive environment for women to express their grief through workshops, support groups, expressive arts, and programs for continued healing.” I was reduced to tears by her loving, compassionate email. I want to share the compassion that we have been shown. I was so concerned about baring my tattered soul to the world that I was hesitant to start the blog…It is the greatest thing I have ever done.

Hi Tersia,

Forgive me for not emailing you right away. I’ve been reading the blog you’re keeping as Vic goes through her illness, and I’ve been touched beyond measure as I read of her struggle, yours, the joy, the roller coaster of emotions. And it took my breath away to listen to the song you dedicated to her “Never Alone”. One of the events we sponsor here at Tapestries of Hope is our yearly pre-Mother’s day gathering, called “Our Moms, Our Memories” and that is the song that one of the daughters sang two years ago.

I worked in hospice for many years, and our current president, Alisa, works at one now, as bereavement coordinator. I don’t know how hospice is in your part of the world, but I’m a strong proponent of it. It makes an impossible time just a little bit more manageable, and I hope your Vic, and you, will make use of it when you decide the time is right. My sister and I called in hospice for my 36 year old brother, Kysa, when he was ill with cancer, and again 6 months later when my mom, Betty Catharine, died of breast cancer. It was my experience with them that led me, ultimately, to work for hospice and then found Tapestries of Hope along with Alisa.

There are no words that I can give you that will make any of this better, but I want you to know that I understand your wishing so desperately for your mom to be here with you now, to listen, to help, to be there for you. My husband Chuck went through a very aggressive cancer last year (thankfully he has a clean bill of health now) but through it I wished for nothing more than to be able to call my mom and know that, even if nothing changed, I would feel better after speaking with her.

If you would like to connect with other daughters who have grieved their moms, I can put you in touch with so many. We have well over 200 daughters who make up Tapestries, both locally in NJ and around the country. We have a facebook page also, and you can find so much support there. Just type “Tapestries of Hope” into your search engine, and you will find us.

Whatever I can do to offer support to you as you find your way through this, please reach out. I’m very approachable and spend so much of my time chatting with daughters and emailing back and forth with them.

Please stay in touch when you can~

Alison,
daughter of Betty Catharine
Founder TOH,Support/Outreach

Beautiful Blogger Award

Tracy Rydzy – http://ohwhatapain.wordpress.com nominated me for the Beautiful Blogger Award. Tracy’s blog is a true eye-opener to me. Tracy deals with chronic and severe back pain every day of her life. Through her words I have learnt to understand Vic’s pain, frustrations and despair better. Tracy also has a superb sense of humor. I recommend Tracy’s blog to everyone who is either in pain, or who has a loved one in pain.

Tracy, I am humbled by your nomination. I am absolutely thrilled!!! And yes, yes, yes I accept! Thank you very much!

Beautiful Blogger Award:

The Rules for The Beautiful Blogger Award:

Write a little something about the Beautiful Blogger who nominated you with the award. See above. And don’t forget to go and check his out too.

Share 7 things about yourself: I can only hope to keep you interested!!

I don’t have a romantic bone in my body
I have the rare ability to love unconditionally. This is part of my heritage that I treasure most
My GP closed my file because he thought I had relocated or died….I am one of the healthiest people on earth!
I don’t read mushy love stories.
I have been married for 22 years to a wonderful man. He cares for Vicky and her boys as if they are his own. He is The Wind Beneath My Wings
We do not have a special song…..
I know more about armored vehicles than cooking.

Nominate 7 other bloggers for the award:

I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:

Never Alone

Yesterday I was really angry with Vic and the unfairness of life!! I know it was because Jared was hurting and I was scared. I watched nurses put needles and IV’s into my beautiful grandson. I saw him being wheeled into theater for the second time this year. I remembered how ill he was as a baby and a toddler. I felt the same fear strike at my heart as 13 years ago…

I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives. I wish I could hold them close and ward off all hardship, pain and fear. I cannot. I can only promise that I will never desert them. I will continue looking for brave doctors and cures….

So tonight I dedicate this song sung by Lady Antebellum to Vic, Jared and Jon-Daniel http://www.youtube.com/watch?v=lnNK4Alwbsw

I love you my beautiful Vic. Your boys are my life.

Kidney stones on the move….

Kempton Park-20120827-00814 — Another Hospital Passage – Different Day

On the 23rd of July, we found out that Jared had kidney stones. (https://tersiaburger.com/2012/07/23/deje-vu-7/). At the time the kidney stones were not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months. On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!

I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid… In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!

By Sunday night the poor soul was quite pale and said his pain was at an “8”. There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, Urobilinogen, pH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….

I managed to get an appointment with the Urologist for 10:00 this morning. He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year. Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning! The child did not whimper or moan! He was stoic in his pain! The 6th kidney stone was dissolved with a procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.

In the passage of the hospital Vic said to me “Mommy, I am so grateful. Jared got through the operation like a real trooper. ” I was immediately filled with an all-consuming anger. The operation went well, Jared did get through it like a trooper but what has started happening in his young body? Adhesions people!! Flippen adhesions!!!!

I said nothing but she saw my face.

As soon as we had Jared settled and comfortable I brought Vic home. She was totally exhausted and in absolute agony!

In the car Vic said to me “Mommy, you seem so angry with me? What have I done?”

“I am angry that an innocent child is going through the same hell that you went through as a child”

Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family. We made the decision not to have more children after Vic was diagnosed. We were determined to never subject another child to OI.

From a young age, we told Vic that OI was a genetic disorder. She KNEW that she should not have children. She fell pregnant TWICE. I know she was on the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds. Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!

I love the boys with every fiber in my body! I am so grateful that they are in my life. They have enriched my life in every way. I cannot imagine my life without them. I don’t want to live without them. But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day… They see their mother’s suffering. They live her suffering! Jared is starting to live his own suffering.

We are seeing Jared regress into Osteogenesis. It has been obvious for a long time that Jared’s ligaments and tissue are affected. He has only had a couple of mild fractures but he is always hurting somewhere.

Today Vic said that I have become “hard”. I suppose I have. Vic thinks I am hard because I believe in death with dignity. Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk! Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).

I cannot do this again. I am venting. I am so angry!! I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.

This vicious cycle has to stop!

Sunshine award!

AWARDS

via Sunshine award!.

Sunshine award!

Whoopee!!!! I have been nominated for a Sunshine Award by brave Katie Mitchell whose blog I follow slavishly! Katie suffers from a Connective Tissue Disorder, Marfan’s Disease. I have learned so much of this talented young person’s journey with pain and how it has affected her life. Katie’s mother also suffers from chronic pain so she knows both sides of the pain story… Thank you Katie for the nomination and for sharing your journey with us!

When I started my blog is was because I needed an outlet for all my pent-up emotions. It is difficult for me to articulate my emotions because I am scared that if I started crying I would not stop. It also bears my soul to the world so it was difficult at first. Every time, before I linked my post to FB, I would sit for a long time and wonder if I should allow family, friends and acquaintances to see my soul or whether I should remain anonymous in WordPress…. I am now comfortable with my FB link as it that I have received the most amazing support from old school friends, family and strangers. I have a new network of people, that care, that surrounds me.

I no longer feel embarrassed about posting – people have the choice to read my blog or ignore it. Thank you for your caring and support! This blog has become a dear friend and confidant!

But allow me to be brutally honest – I am thrilled about this nomination. I don’t know how it works but I mailed Katie and she gave me instructions…Thank you again brave Katie!

So according to Katie – here are the rules:

If you are nominated you must include the link in a blog, linking to the person/blog that nominated you.
You must answer some questions and nominate 10 fellow bloggers and link their blogs in your post.
Let the people you have nominated know that you have nominated them!

Here are the questions:

1. Who is your favorite philosopher?

Confucius without a shadow of a doubt!

2. What is your favorite number?

9 – I believe in the science of numerology the qualities of the number 9 are those of leadership, the ability to see clearly, integration, personal integrity, unity, truth, perfection and concord.

9 represents wisdom and responsibility, and the ultimate goal of the number 9 is to serve humanity.

9 represents human’s ‘earthly lesson’, which is ‘forgiveness’. Number 9 learns selflessness and compassion. People with the 9 energy work without motive. Their purpose is for the greatest good of all. They have a protective energy and they have great power and love in their soul. They will grow and learn throughout their lifetime tolerance, compassion, selflessness and generosity. There is a great strength of character within the 9 person, as well as wisdom, intuition and high idealism. There is also a great deal of warmth of feeling and love of home, family and friends.

3. What is your favorite animal?

Eagles!

Did you know that an eagle knows when a storm is approaching long before it breaks?

The eagle will fly to some high spot and wait for the winds to come. When the storm hits, the eagle sets its wings so that the wind will pick it up and lift it above the storm. While the storm rages below, the eagle is soaring above it.

The eagle does not escape the storm. It simply uses the storm to lift it higher. It rises on the winds that bring the storm.

We are all faced with the winds of the storm that bring sickness, tragedy, failure, and disappointment in our lives. It is not the burdens of life that weigh us down, it is how we handle them.

The Bible says: “Those who hope in the Lord will renew their strength. They will soar on wings like eagles.” Isaiah 40;31.

4. What are your facebook and twitter ?
https://www.facebook.com/tersia.m.burger

Twitter @Tersia912

5. What is your favorite time of day?

I am a night owl. I am not a morning person!

6. What was your favorite vacation (or ‘holiday’ as we say where I’m from)?

My honeymoon in Switserland and Germany in 1990. Everything was so magical.

7. What is your favorite physical activity?

Walking barefoot on the beach.

8. What is your favorite non-alcoholic drink?

Tea! I must have 15 cups of tea a day!

9. What is your favorite flower? For the life of me I cannot remember the name of my favorite flowers.

10. What is your passion?

My family, my work and the downtrodden.

My Ten Nominees:

I actually don’t know if I can only nominate 10 bloggers. All these bloggers have meant a lot to me. I have learnt from them. Some of them have given me great insight into Vic’s journey and http://ourlonggoodbye.wordpress.com transports me into an Assisted Living Facility and brings back memories of my Dad’s Alzheimers journey…. Trazy of ohwhatpain has given me great insight in pain. Here goes!

If you click on any of the links above, you will enter a different world that will enrich your life. Thank you to everyone who reads my blogs and puts up with my rambling, self centred emosions.

God’s Megaphone…….

C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”

For 37 years I have bargained with God. He alone knows of all my anguish, tears, pleading, my fears and pain. I am strong. I don’t cry easily or often. I have cried before God. Pleaded with Him for mercy.

He chose to ignore my pleas for mercy.

I have not been to Church in more than two years. I attended Marlene and then my Dad’s funeral. I went to one service at Reuben church. I have been angry with God….. Disappointed that the God of Mercy I learnt about from my parents’ knees does not exist. I have only experienced a God who has sentenced my child, and now my grandson, to a life of pain and suffering.

Today I attended the annual church fete. The arms that I have missed for more than 2 years enveloped me. Kisses rained on my cheeks. “I have missed you”, “We still pray for you and Vicky everyday of our lives”….. “It is so good to see you!”

The minister, Martin, hugged me and said “I think of you every day. We are always here for you….

I cried. I miss my church friends but I cannot go back for the wrong reasons.

I wondered tonight why the friendships did not last outside the confines of the church? I realized that our pain is too much for people to cope with. They hurt for me…..

But in the silence in our everyday lives is deafening…God’s megaphone has obviously not roused the deaf in our world…….

The final battle

Vic and JD watching a movie on the laptop

For the past couple of days JD has not eaten well and lost control over her bowels a couple of times. This morning she looked at me with her beautiful, soulful brown eyes and whimpered….

A couple of times we have had her paloured for her final journey and then my courage forsook me. I kept finding excuses why she should not go for an injection. Her cough was better, “she has a sparkle in her eye”,” she “bounced” around her snack”…. Yesterday I gave her some of her all time favorite treats i.e. dried sausage (droëwors) and she did not touch it!

Last night she sat upright – I think it was too difficult to breathe. JD had congenital heart failure.

Today Danie came home from a business appointment and I said “It is time”. He knew exactly what I was saying. Vic came through and sat on the carpet with JD. She said goodbye. I picked JD up and walked to the car. Danie drove.

We took JD to our local SPCA. A young, sympathetic, female veterinarian asked me if I wanted to leave. I said “No.” She battled to find a vein. “It’s the congenital heart failure” she said.

“She is almost 16 years old” I said.

“Wow, she is really very old. She is a pretty little dog” she said

“Have you ever had a dog euthanized?” she asked

“No” I said

“I will inject an anesthetic into her veins and she will fall asleep. She may have a muscle contraction or a bowel movement. It will be unpleasant for you but not for JD. She would have passed on.”

“Okay” I said

She found a vein and JD slipped away whilst my tears fell on her coat.

At 12:05 on the 24th of August 2012 JD went to Doggie Heaven.

I wish I could tell you….

I wish I could tell you…..

I wish I could tell you….

I wish I could tell you,
About the depth of my pain,
It’s almost never-ending,
And hard to explain.

I wish I could tell you,
How broken I feel inside,
My body just hurts so much,
But it’s easy to hide.

I wish I could tell you,
I can’t function very well,
Difficult to get around,
But no one can tell.

I wish I could tell you,
But you wouldn’t understand,
That I often have to ask,
For a helping hand.

I wish I could tell you,
How I honestly feel,
But you wouldn’t believe me,
That this pain is so real…
http://janspoetryplace.webs.com/poemsofpain.htm

Rest-in-Peace, Tony Nicklinson – Brave Warrior!

Rest-in-Peace, Tony Nicklinson – Brave Warrior!.

Rest-in-Peace, Tony Nicklinson – Brave Warrior!

https://si0.twimg.com/profile_images/2304224406/sztkgif6qtuvel8chbbj.jpeg — Tony Nicklinson

When Tony Nicklinson’s legal team visited him two days after the high court decision, he communicated via computer by moving his eyes “So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.

“I suppose it was wrong of me to invest so much hope and expectation into the judgment but I really believed in the veracity of the arguments and quite simply could not understand how anybody could disagree with the logic. I guess I forgot the emotional component.”

Nicklinson’s despair following last week’s ruling was evident to all, as he broke into sobs that shook his paralysed body. In a statement issued through his lawyers, he added: “I am saddened that the law wants to condemn me to a life of increasing indignity and misery.” http://www.guardian.co.uk/uk/2012/aug/22/tony-nicklinson-right-to-die-case?newsfeed=true

Today at 10:00 Tony Nichlinson died surrounded by his loved ones. His family said he simply gave up….. This supports my theory that death is actually a conscious decision. I have seen Vic turn back from death. It is not anything physical but in that second something changes! We all know of someone who has “held on” until a loved one walked in whilst others wait until their loved ones have left the room before they die. I have personally experienced this with my mom when she passed.

I take great comfort from all my research into Near Death Experiences.

First, published studies have shown that people who undergo cardiac arrest can recall specific memories and demonstrate consciousness. Second, during cardiac arrest, there is no measurable brain activity. “If you combine these two sets of data together, it indicates a need to do a large study to determine: is this real or not? Can this really be going on?”

Still, the explanation behind these events can be attributed to the complexity of the human mind, not, as some believe, a universal spiritual experience, or even a new realm of science.

“When you study mind and brain, you see that, although in many circumstances this practical model we have developed — mind and brain are the same thing — is fine, when you go to an extreme environment like during a cardiac arrest…they don’t seem to apply anymore,” says Parnia. “It may suggest that there’s something that hasn’t been discovered scientifically.”

Studies by Parnia and other researchers show that between 10 and 20 percent of who are resuscitated from cardiac arrest had a near-death experience (NDE). Various other studies show the frequency of near-death experience to be between 4 and 18 percent. The experience is typically described as a progression of stages. First, the person has a sense of peace, then a sense of separation from the body. The person then enters into darkness, and sees a bright light like the end of a tunnel. Finally, the person enters the light and interacts with an entity, described as God, Allah, or simply a universal cosmic force.

During the time that people report the feeling of detachment from their physical body, or an out-of-body-experience, they report a perception of floating above their body, or floating near the ceiling in the room where the experience occurs. http://www.popsci.com/sam-barrett/article/2008-10/first-few-minutes-after-death?page=1

The art of dying is the art of letting go. Our fear of death and letting go keeps us in fear of uncertainty and change, which are a natural part of life. Out of these fears we hold on to old beliefs which make us live in fear, misery and the idea of separation. Our fear of death is deeply repressed and usually unconscious. We are filled with fear and trepidation when a beloved dies, is terminally ill, or when we ourselves are challenged with illness, old age or a life threatening situation.

I am grateful that Tony Nicklinson’s suffering and misery has ended. He is at peace and I believe now truly lives in a healed body His suffering is over. I thank God for His Mercy.

Rest in peace Tony Nicklinson – brave warrior!

Today was a bad day

Vic and her boys Christmas 2011 — Christmas 2011

When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.

So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.

Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!

An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.

My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!

As usual I digress.

Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her. She fears that the boys will abandon her and look to us, the grandparents, for parenting. She fears losing the only “position” in life that she has left – the position of “Mother”. It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.

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