This weekend I saw raw resentment towards me in my little girl’s eyes.
We checked into Hospital on Saturday morning at 08:00. Vic was seriously peeved that she did not get a private room as per the doctor’s instruction. Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language. She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.
Then she started telling us about this wonderful neurosurgeon that she works for. She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down! Vic then said that she had decided no more surgeries…wow! Did this set the neighbour off! She took the moral high-ground and started telling us that we must have faith and God will heal Vic. Vic was in hospital because we keep asking God to heal her. We should only ask once and then have faith…
She laid hands on Vic when I went downstairs for a cup of tea. I would never have allowed it!!
Please don’t misunderstand me – I have nothing against religion. Religion is important. I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child. Jared said to me today “Oumie, I don’t want to be a Christian like that …”
I do not stand in judgement of anyone. It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin? As my friend Marlene used to say “Who died that you think you became God?” If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians. If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…
People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made. They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice. Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that? Surely love is unconditional? Through thick and thin?
I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…
Jared sat at hospital with us all day Saturday. He is old enough to want to do it! That young man adores his Mommy. Jon-Daniel copes in a different way. He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend. Jon-Daniel makes Vic laugh. Jared makes Vic coffee.
Two different boys with two different ways of coping and two different ways of expressing their love. Yet united in their love and despair for their mother.
Vic ended up going into theatre just before 19:00 Saturday night…she was starving!! Poor little poppet! I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre. HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays. He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta! I must add that he too had never had an OI patient as old as Vic. So Vic had two specialists operating on her little arm.
By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.
History was made Saturday. A doctor wrote on Vic’s file “Mother of patient to stay with her”! In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”. What a bright and intelligent young man he is even if he charged double medical aid rates.
Vic was however extremely angry with me because she was sent to ICU. Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward. She cannot be given the amount of opiates that she needs, for pain control, out of ICU.
I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control. (Thank you Google for the fact sheet). When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!” She cried. I saw the resentment in her dark, sad eyes when she looked at me.
For once I did not care. I love my child and I will do anything and everything to spare her pain.
I have to find out which anaesthetic they used. The last two procedures at the Union resulted in terrible aggression in Vic. Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister. She told me exactly what she did and did not think of me. It was a horrific experience. I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.
Vic ended up spending 2.5 days in ICU. I never left her side but to go shower at home and take Jared to the urologist this morning. The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme. I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.
Well this is now behind us. We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm. That Vicky will get better and enjoy some Jurnista quality of life!
I want to blog on ICU’s and what we subject our loved ones to next. I am just too tired and emotionally drained to even attempt it today.
We are seeing a GP tomorrow morning regarding Vic’s arm. Both her arm and hand are so swollen that I am concerned that she may actually lose her arm. It has now been more than a month from the day that she fractured her arm. When I bathed her tonight I removed part of the dressing that is protecting her arm. Her arm is still black and blue and horrifically swollen. I am convinced that she has pressure sores under the cast.
Today was a truly exciting day… (Relax, I am being facetious)
We phoned the Orthopod that treated Vic in hospital. Sorry, he (Dr Y) can only see Vic next week! We then phoned her original Orthopod (Dr V) with the permission of Dr Y. Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y. We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him. “We will not even allow you into Dr’s rooms without a letter. Doctor V is too busy to phone. Get a letter if it is so urgent for you to see Doctor!”
Well!!! What the hell do you do? You cannot force a receptionist to allow you to see a doctor. Even if you force your way into the consulting rooms you cannot force a doctor to see you.
The fact that Vicky is terminal does not give any doctor permission to wash their hands off her. It is written into our Constitution that every citizen of this beautiful country has the right to medical care!! “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.
The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”
I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.
Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms! Why only tomorrow? She is too fully booked today to see us today…
Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working. Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?
I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!”
Is there hope after all? I am cautiously optimistic!
Tomorrow afternoon we see the Urologist. Strangely I am at peace about Jared. God cannot be that cruel so I trust in a positive outcome!
JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure. In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle. She coughs throughout the night and end up sitting upright to breathe easier. When I get home she is so excited that she has a coughing spell.
JD follows me where ever I go. If I step back I step on her. She sleeps in my room. JD and I have a system worked out. When I come out of the shower she is already waiting for me. When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have. I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!
I do not want JD to suffer any further. Tomorrow morning she will go to the parlour one final time. In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven. Vic and Jared want to go with her.
I am a coward. I do not have the resilience and strength to take her.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia
I am disgustingly healthy! I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains. Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning. It is involuntary. I am a ninny. My family joke with my non-existant pain threshold. Yet I see the doctor once a year for an annual check-up as I did last week.
Liver, lungs, kidneys perfect according to my blood tests. Slightly elevated cholesterol count. Doctor says I am in near perfect health. So how do I understand my child’s pain and discomfort? I don’t! If you were born blind how could you ever understand or appreciate color?
There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome. http://connectivetissuedisorders.wordpress.com Katie gives me an insight into pain… She articulates her feelings beautifully. Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening. I will actually print the document and discuss it with the family.
Katie writes in red and my comments are in black:
Tips for dealing with people in pain:
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey. Vic very seldom is able to stick to a commitment. It fills her with remorse. She desperately wants some normality in her life. Some semblance of a social life. Pain and ill-health prevent it!
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it. Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence! As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life. As a family we become angry, frustrated and scared when Vic tries to “live”!
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. I never realized or appreciated this aspect of pain. I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain. Vic at times seems totally disinterested in the boys, the family, in life…
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. Vic battles with too much movement or noise. She becomes very irritated.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. Absolutely!! If Vic wants something she wants it now!
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. Sometimes I am too scared to ask. Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body! I am feeling like death”
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt. Tonight Vic could not rub the hand cream into her little hands. She could not pull a brush through her hair…
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others. I think Vic is past this stage. Her pain is debilitating relentless and never-ending!
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down). We are past the visiting stage.
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. Every small action elicits a “Thank you Mommy” Reuben actually remarked that in the past Vic took everything that I did for her for granted. At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Vic’s pain is well-defined but at times she has referred pain.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us. We do not understand pain. I never have pain. I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain. I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad? I don’t understand Vic screaming with pain but I KNOW her pain is real!!!
Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/
In addition to the above I would like to add some of my own observations…
13. Pain makes people emotionally over-sensitive. Vic often misinterprets what we say. She takes things very personally! She is almost jealous of the boys and my relationship. She feels excluded from so many aspects of our lives. Last week Vic said “You are the fun-Oumie. I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places… It is okay because she is scared of losing everything that is precious and dear to her.
14. Pain makes people selfish. This is a harsh statement. When your body is engulfed in pain it must be very difficult to see reason and to wait. It must be difficult not to lash out at the world. To not stop and think of the effect that your illness has on your family and friends.
15. Chronic pain and depression are closely linked. Chronic pain almost always leads to depression: Why? Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain? Imagine not having anything to look forward to… We try to set little goals for Vic.
16. Fatigue is a definite factor.
Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired. We leave her to sleep. We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired. Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…
17. Addiction:- “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“
The amount of medication that Vic takes is a source of great embarrassment to her. Her biggest fear is that people will think of her as a “drug addict”. This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about! Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.
I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain” But this is part of our journey…
 I am posting this extract from the Osteogenesis Imperfectawebsite. It is informative and will give you some idea of the terrible disease called Osteogenesis Imperfecta.The problem with Vic is the Connective Tissue issues. If she had not had the blotched pro-disc surgery she would have been fine.
Vic is terminal due to doctor error! Vic will probably die from her frozen abdomen and the issues that arise from a frozen abdomen. That is the short and the tall of it.
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Osteogenesis imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person is born with this disorder and is affected throughout his or her life time.
Genetics
Testing and DiagnosisDiagnosis for OI is primarily based on signs seen in a doctor’s examination. When there is uncertainty about the diagnosis, it is best to consult a physician who is familiar with OI. Genetic testing is available to confirm a diagnosis of OI through collagen or gene analysis—a skin sample or a blood sample are used to study the amount of Type I collagen or to do a DNA analysis. TypesSince 1979, OI has been classified by type according to a system based on mode of inheritance, clinical picture, and information from x-rays. The characteristic features of OI vary greatly from person to person, even among people with the same type of OI, and even within the same family. Not all characteristics are evident in each person. The OI type descriptions provide general information about how severe the symptoms probably will be. Health issues frequently seen in children and adults who have OI include:
See Types of OI for a detailed description. TreatmentDoctors who see children and adults with OI include primary care physicians, orthopedists, endocrinologists, geneticists and physiatrists (rehabilitation specialists). Other specialists such as a neurologist may be needed.
Treatments Being Studied
At this time, there is no cure. PrognosisThe prognosis for a person with OI varies greatly depending on the number and severity of symptoms.
The most severe forms result in death at birth or during infancy. Despite the challenges of managing OI, most adults and children who have OI lead productive and successful lives. They attend school, develop friendships and other relationships, have careers, raise families, participate in sports and other recreational activities and are active members of their communities. Managing OI
History of OI in Medical LiteratureThere is evidence that OI has affected people throughout history. OI has been recognized in an Egyptian mummy dating from 1000 BC. It has also been identified as the medical condition suffered by Ivan the Boneless who lived in 9th century Denmark. Prince Ivan, according to legend, was carried into battle on a shield because he was unable to walk on his soft legs. Case studies of fragile bones and hearing loss have appeared in the medical literature since the 1600s.The term “osteogenesis imperfecta” was originated by W. Vrolik in 1849, and the condition was loosely divided into “congenita” and “tarda” by E. Looser in 1906. Van der Hoeve in 1918 described the occurrence of fragile bones, in combination with blue sclera and early deafness as a distinct inherited syndrome. In the 1970s, Dr. David Sillence and his team of researchers in Australia developed the system of categorization using “Types” that is currently in use. His original four classifications (Type I, Type II, Type III and Type IV) combine clinical symptoms with genetic components. This listing is based on the number of people in the study who had similar symptoms. The types do not go from mildest to most severe. This classification system has been generally accepted world wide since 1979 but continues to evolve as new information is discovered. In recent years, evidence from bone biopsies and other research led to the addition of Types V, VI, VII and VIII. More Information |
What a lovely surprise. Gillian and Len popped around for a cup of tea! What makes it unusual is the fact that they live in White River and have just been to the Sani Pass. Vic was so happy. She cried tears of happiness when she saw Len. For a precious hour today we were able to laugh and visit with dear friends.
Len is the second “oldest” living male role figure in Vic’s life. My brother Johan is the “oldest” living male role model. Gill and Len have been my dearest friends for the past 34 years. Is oldest the correct word? Len is older than Johan and yet Johan is the “oldest” male…So “oldest” in this case means the “longest around”…
Gill was so amazed. When she last saw Vic she was convinced that she would not see Vic alive again… In the meantime Vic has had her fall and technically speaking should be so much worse off. But Vic has once again bounced back.
I decided that maybe I should check the difference between critical, chronic and terminal illness. Maybe Vic is just chronically ill and the doctors got the terminology wrong.
“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects.[1] The term chronic is usually applied when the course of the disease lasts for more than three months.[1] Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and HIV/AIDS”. From Wikipedia
Critical illnesses are serious illnesses that put the afflicted in danger of possibly dying. The illnesses that are considered critical tend to vary. Typically the big four critical illnesses that are covered would be heart attack, cancer, stroke and coronary artery by-pass surgery.
“Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer”. From Wikipedia
So according to Wikipedia Vic squarely falls into the terminal illness category.
The experience of death and dying has been transformed over time by significant advances in medical care and technologies, from a short-term event into one that usually involves a prolonged time of slow decline from chronic degenerative conditions.
Let’s look at Vic. Vic was diagnosed with Osteogenesis Imperfecta as the age of 18 months. By her 3rd birthday Vic had had 41 fractures. The prognosis: – Vic would not live to be older than 12
Vic survived her 12th birthday and got married at the age of 21. Vic fell pregnant 6 weeks after the wedding. The prognosis: Vic would not survive the birth of her baby.
Vic survived the birth of Jared. When he was 7 months old Vic needed surgery to both her wrists. She had fractured both her wrists and torn the ligaments picking up her baby. When Jared was 13 months old Vic fell pregnant for the second time. The prognosis: Vic and the baby would not survive the pregnancy. Vic was on bed rest when she was 3 months into her 2nd pregnancy.
It was a difficult pregnancy. Vic survived and so did Jon-Daniel.
The pregnancies took a severe toll on her health.
At the age of 26 Vic had a hysterectomy. Age 27 Vic had her blotched pro-disc surgery. Life threatening sepsis resulted in 80, mainly abdominal surgeries. Now in 2012 there is no further treatment or surgeries available. Over the past 10 years Vic has bounced between life and death. She has certainly had good times as well as bad times over the past 10 years. She has loved and hated, laughed and cried. She has had good days and real bad days. She has raised two beautiful boys to be compassionate, caring, responsible young men. Boys that have brought so much joy to their mother’s life and that make us all so proud. Young men that we know will honor their mother and their upbringing for the rest of their lives.
The difference however is that this year I believe Vic went from chronic illness to terminal illness. This year the medical profession has given up hope. Brendon has categorically stated he will perform no further gastrointestinal operations on Vic, The orthopedic surgeon refuses to pin her arm and the physician cancels blood tests… On Friday we went back to the orthopod as her hand is so swollen and the pain is getting worse in the arm. The X-rays showed that the fracture has been aggravated. The displacement worse and yet he cannot do anything. The sepsis from the spine and abdomen will spread to the arm.
Everyone has given up on Vic.
It is so soul destroying that no-one is prepared to try anymore. This year every darn doctor has refused me. I have always been able to bully them into trying one more time…just one more time. I cannot take Vic to another gastroenterologist because someone who does not know the condition of her abdomen will certainly cause her death.
Tonight, after Vic’s 23:00 medication she just sobbed and sobbed. I know her arm is really hurting. She asked me to lay with her and I held her until her sobs subsided and her breathing became deep and peaceful. She kept murmuring “I am sorry Mommy…”
Sorry for what? Vic is sorry that she has “let me down”. That she has failed at surviving and truly bouncing back. Being able to maintain a “life” and assuming responsibility for her own household and family.
Gill gently suggested that I blog happy moments… So when I sat down tonight I tried to think of happy moments to share but I could not! Gill says my blog is sad and I suppose it is. The blog however mirrors my deepest feelings.
I am sad for my beautiful little girl. I am sad seeing Vic deteriorate and her suffering increase. I am sad for my beautiful grandsons and the despair in their eyes when they look at their Mom…
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Muriel posted this message on Vic’s Facebook page. Today it echo’s my feelings. I am so tired of living. I am so tired of this miserable existence that we call life. Surely, there must be more to life than breathing!
Today was a day out of hell. I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating. I got up with great difficulty, showered, and made Kreemy Meal for my family. Both Jared and Vic need soft foods. I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.
Within 5 minutes, I was stuck in terrible traffic. Five lanes reduced to two…
Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!! I phoned Vic to check on her only to be told that she had gotten ill all over herself! She had to bath and I was not home to help her! I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again. Once she felt better, she would have to ask Primrose, the helper, to help her bathe. I could not leave the test site.
Danie phoned to tell me – “No Morphine Syrup – come back next week”. Some good news was that Esther came to visit and helped Vic bath. That girl is an absolute saint! Esther also took Jon-Daniel to the movies. I am so grateful that he could get out of the house of gloom and illness.
Then the system failed… The shipment would be delayed by at least another 5 weeks!
Another traffic jam to my next meeting…
An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic! A 20-minute trip became a 1.5-hour trip! Arghhhhhh
At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00. In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him. I put it through the strainer and rushed off to his room with a tray and his pureed food. I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor! I just burst into tears.
I cannot believe that something that I would normally laugh off as an accident set me off. Poor Jared had to eat soup for dinner. He is so tired of soup!
Well today, I am fed-up with life. I am tired to the core of my soul. I do not want to hear that I am doing a great job or that I am strong. I do not want to hear anything! All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.
Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party? I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill. I do know I cannot afford to cry. It distresses everyone around me.
I need a stronger anti-depressant.
I am going to bed. I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives. Life is already so hard for them. Tomorrow is another day and we will face whatever life throws at us!
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Vic's Final Journey 