It's amazing how where we always go, we feel His presence so strongly.
This is the second Wednesday where we spend our afternoon up on the third floor of a shophouse in HongKong Street to do our physical program with Jere. I remember the first time when we stepped out of there, my dear husband said, it felt like the apostles worshipping up at the attic. Somehow, we were led here to spend our afternoon every Wednesday. The place is run by a church ministry. All very kind people doing it out of love. The children and parents we have met there are really amazing. They also got a really beautiful name called CLOUDS OF PRAISE. They start and end each session with a prayer and a song of praise in chinese and the cutest thing is Jere sings with them. Jere will go 赞美主(Praise the Lord!) Alleluia! and 因主爱我! (because He loves me!)
After the session, I went one street down and bought the boys a plate of hor fun and fed them their dinner. After feeding them, I took a walk with them to Peninsula Plaza to buy the organic eczema oil for Jere. It seemed to be the only oil right now that is working for him. Jere's eczema flared up so so bad after I used the aqueous cream prescribed by the drs. Usually I would have tested whatever I was using on a small segment but when I applied that cream on Jere, somehow, I don't know why, I just heeded the advise from the dr and pharmacist of applying it liberally all over and the next thing I know, Jere's skin flared so bad that he looked like he was burnt from head to toe. If his urologist had seen him, she would have immediately got me locked up and not just accuse me of neglect and abuse. We prayed and prayed about it. We were so worried but yet we did not dare to make any appointment with any dr to review it as we were afraid they were just gonna give more steroids and things that would do Jere harm. Then last Tuesday, someone told me to go to peninsula to look for a timer that I needed for Jere's program activities and somehow instead of finding the timer, I ended up at this organic shop called Eden and got my hands on the eczema oil that did wonders for Jere. It was the only oil that Jere would allow us to apply on his face to clear the eczema. Thank God for that! Yesterday when we were at the Eden organic shop to buy the eczema oil again, the boss and his wife so very kindly suggested praying for Jere. Frankie the boss started the prayer saying, "Lord, it's by no coincidence that this mummy here brought in her son to get something for her son's eczema..... " then they laid hands and prayed over Jere. Tears welled in my eyes as they prayed. It just made me feel that every step we were taking, God is with us. People always asked me, "What do you mean you don't have peace to do it?" It's this. God's peace just transcends when He's with you.
After that, Tim came to fetch us and the kids all fell asleep in the car after a tiring day. I rushed to the supermarket once I settled the kids at home and when I entered the supermarket, yes our local supermarket, the Fairprice, there was this song playing so so quietly in the background that it melted all my anxiety, my fatigue.... It was a song that we sang at praise and worship at healing mass last Saturday at St Michael's.
"You Raise Me Up"
When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
You raise me up... To more than I can be.
I knew then he was right there beside me.....
Thank You Lord!
Showing posts with label Jeremiah Update. Show all posts
Showing posts with label Jeremiah Update. Show all posts
Wednesday, August 20, 2008
Wednesday, July 2, 2008
The night after the urologist follow-up
That night, Tim and I went down for a walk to 7-Eleven on the pretext of buying bread so we could have a good chat. He seemed heavy. I know it bothered him.
Tim: Is there something you are trying to prove?
Me: No. What do you mean?
Tim: Are you trying to prove something on Jeremiah's expense?
Me: No. I know God has plans for Jeremiah. Plans to prosper. Not to destroy. He will be exalted of the Lord.
Tim: I'm just afraid. If making the decision is for myself, I won't be so afraid.
Me: What are you afraid of? Jeremiah blaming us like the doctor said?
Tim: Yes.
Me: I believe, Jere would not blame us for anything if we bring him up to believe what is right and what is wrong. If he chooses to blame us for anything, then we must have failed as parents and definitely deserve whatever blame there is. I believe that God will heal him.
Tim: So you are trying to prove something?
Me: No. I just feel that God has His purpose in making Jeremiah so and making us journey this life with Jeremiah. Jeremiah was made so that God's works can be seen in him. We will definitely meet with persecutions. Jesus, himself also met with lots of persecutions. No? Did He give up? No. Mother Mary saw her son suffered, but still she had absolute faith in God, our father. Mother Mary surrendered everything to our Lord. I just feel that we should just pray and have faith and surrender ourselves to Him too. Be not afraid. God goes before us always. I know there is nothing beyond our God. He is a faithful God and we just gotta stay faithful to Him.
Tim was really silent for a long while.
Me: Are you ok? So are you still worried? Disturbed?
Tim: No. I am at peace now after hearing what you said.
Me: You know what? The doctor gave us 2 weeks! Two weeks from the 26th June..... 10th July.The doctor told us to go read up on neurogenic bladder and come to a decision of a vesicostomy or do the 3 hourly Clean Intermittent Catheterisation (CIC)
When I left the clinic that day, I've already had this in mind. Read up on neurogenic bladder? No! That's not where I gonna find my answer. I had this prompting to read the book of Jeremiah and that's where I gonna find my answer. Shall we read it together and discuss about it? We should find our answer in God's word.
Tim: Ok! Let's do it!
I know this may sound almost insane, crazy, ridiculous, absurd to many of you... How could we find the answer in the bible you may say. But this is what we've decided to do so if any of you wanna join us on this journey, pick up your bible and read the whole book of Jeremiah and we can all share our thoughts about it.
Lord, help us to find the answer in your word.
Open my eyes that I may see
Glimpses of truth Thou hast for me;
Place in my hands the wonderful key
That shall unclasp and set me free.
Silently now I wait for Thee,
Ready, my God, Thy will to see;
Open my eyes, illumine me,
Spirit Divine!
Open my ears that I may hear
Voices of truth Thou sendest clear;
And while the wave notes fall on my ear,
Everything false will disappear.
Open my mouth and let me bear
Tidings of mercy everywhere;
open my heart and let me prepare
Love with Thy children thus to share.
Open my mind that I may read
More of Thy love in word and deed;
What shall I fear while yet Thou dost lead?
Only for light from Thee I plead.
Tim: Is there something you are trying to prove?
Me: No. What do you mean?
Tim: Are you trying to prove something on Jeremiah's expense?
Me: No. I know God has plans for Jeremiah. Plans to prosper. Not to destroy. He will be exalted of the Lord.
Tim: I'm just afraid. If making the decision is for myself, I won't be so afraid.
Me: What are you afraid of? Jeremiah blaming us like the doctor said?
Tim: Yes.
Me: I believe, Jere would not blame us for anything if we bring him up to believe what is right and what is wrong. If he chooses to blame us for anything, then we must have failed as parents and definitely deserve whatever blame there is. I believe that God will heal him.
Tim: So you are trying to prove something?
Me: No. I just feel that God has His purpose in making Jeremiah so and making us journey this life with Jeremiah. Jeremiah was made so that God's works can be seen in him. We will definitely meet with persecutions. Jesus, himself also met with lots of persecutions. No? Did He give up? No. Mother Mary saw her son suffered, but still she had absolute faith in God, our father. Mother Mary surrendered everything to our Lord. I just feel that we should just pray and have faith and surrender ourselves to Him too. Be not afraid. God goes before us always. I know there is nothing beyond our God. He is a faithful God and we just gotta stay faithful to Him.
Tim was really silent for a long while.
Me: Are you ok? So are you still worried? Disturbed?
Tim: No. I am at peace now after hearing what you said.
Me: You know what? The doctor gave us 2 weeks! Two weeks from the 26th June..... 10th July.The doctor told us to go read up on neurogenic bladder and come to a decision of a vesicostomy or do the 3 hourly Clean Intermittent Catheterisation (CIC)
When I left the clinic that day, I've already had this in mind. Read up on neurogenic bladder? No! That's not where I gonna find my answer. I had this prompting to read the book of Jeremiah and that's where I gonna find my answer. Shall we read it together and discuss about it? We should find our answer in God's word.
Tim: Ok! Let's do it!
I know this may sound almost insane, crazy, ridiculous, absurd to many of you... How could we find the answer in the bible you may say. But this is what we've decided to do so if any of you wanna join us on this journey, pick up your bible and read the whole book of Jeremiah and we can all share our thoughts about it.
Lord, help us to find the answer in your word.
Open my eyes that I may see
Glimpses of truth Thou hast for me;
Place in my hands the wonderful key
That shall unclasp and set me free.
Silently now I wait for Thee,
Ready, my God, Thy will to see;
Open my eyes, illumine me,
Spirit Divine!
Open my ears that I may hear
Voices of truth Thou sendest clear;
And while the wave notes fall on my ear,
Everything false will disappear.
Open my mouth and let me bear
Tidings of mercy everywhere;
open my heart and let me prepare
Love with Thy children thus to share.
Open my mind that I may read
More of Thy love in word and deed;
What shall I fear while yet Thou dost lead?
Only for light from Thee I plead.
Times my husband stood up for me.....
At that moment of time when I walked out of the clinic after being accused of neglect and abuse of my child, not one, not two but I really can't recall how many times the dr threw the accusation at my face. I asked myself was it a mistake that I told my dear hubby, Tim to concentrate on his work and telling him I could manage the hospital visit all on my own when he had offered to go with us the night before.
I felt so lousy that on the impulse, I took out my mobile and dialled his number as I walked out of the clinic. Sobbing into the phone and almost crying my whole heart out, I must have frightened Tim. I related what had happened in the doctor's room with almost all the emotions I had, I think. Almost like an abused puppy that was rendered really helpless, I hung on to the phone as I walked my way up from the basement which was almost like hell on earth at that very moment. I walked to Macdonalds to get my little one a happy meal for his lunch as I was in no condition to try to get a hot bowl of noodles and feed him that. I hung up the phone when I reached Macdonalds and ordered the happy meal for Jeremiah in between my sobs. The staff very kindly told me to take a seat and served it to us in no time. I sat down with Jeremiah and looked at him. I cut up the nuggets for Jere and he started to eat while I was so affected that I did not feel hungry at all though it was way past lunch time.
Before I had realised, twenty minutes had passed and Tim called me back asking where was I and I said I was still in Macdonald's feeding Jere. Before I hung up the mobile, I saw him approaching us.
Tim: Come! I go and speak to the doctor!
Me: For what? They have given us an appointment to see her in 2 weeks.
Tim: No! I want to know what really happened.
Tim then walked towards the clinic, not realising that the clinic had moved to the basement. I then highlighted to him that the clinic was not where he thought and pointed him the right direction. Not really keen to go back there, I said I'll go to the pharmacy to collect Jeremiah's medicine.
We both then went different directions. I went to the pharmacy to drop off the prescription while Tim headed to the Children's surgery centre at the basement. After dropping the prescription, something in me just told me I should head to the basement, knowing how rash my husband can get and angry when his wife is being seen as bullied. When I reached the basement, Tim said the doctor was still there and they would squeeze him in to speak to the doctor. The staff nurse and the senior staff nurse then saw me and asked how come I was back. I explained that my husband wanted to see the Dr. Then they told me the doctor did not mean what she said and surely I understand that. They then brought me into one of their rooms and told me the dr was a good doctor and she was genuinely concerned and had not meant to hurt me at all and hope I would understand that. I then told them that if an educated person like me was intimidated by them, what more would the uneducated feel? Then I told them not to worry and I don't blame the dr but I really just did not appreciate the accusations at all. Then we went out of the room.
It wasn't too long before we were called into the room of the Dr.
Tim: Dr, what is this? what is this that I hear you don't want to see us anymore.... what is this about a court order? What is this about my wife being charged for neglect and abuse?
Tim almost sounded a little rude I felt in questioning the doctor on what is this.... what is this... what is this....
Dr: No Daddy... you guys gotta make a decision. I really don't know how else I could make your wife come to a decision short of threatening her. I feel I have really failed in what I am doing after 2 years you guys still not decided to do the catheterisation.
I was kinda shocked that the doctor admitted to threatening me.
Tim: No Dr, You definitely did not fail. Everytime I walk out of your clinic, I am very affected and would think of your proposal at least for the next few days.
Dr: Then what is holding you back daddy?
Tim: We are not at peace with it.
Dr: What is holding you back? Shall I arrange for you guys to meet other parents who has done it?
Tim: I must tell you first. We may come back with the same decision. NO CIC. NO VASECOSTOMY.
The doctor seemed kinder or rather a little more cordial and polite to Tim. Why? I don't exactly know the reason but maybe Tim was sounding angry and a little forceful.
It was the same conclusion anyhow to return in 2 weeks with the decision we should have come upon and meet with a parent of similar case of child.
We left the clinic and Tim rushed back to office to continue his important conference that he had left abruptly to stand up for his wife.
Thank You Lord for a husband who loves me so dearly
Lord grant Tim the graciousness, the humility and a forgiving spirit when faced with persecution, trials and tribulations. AMEN!
I felt so lousy that on the impulse, I took out my mobile and dialled his number as I walked out of the clinic. Sobbing into the phone and almost crying my whole heart out, I must have frightened Tim. I related what had happened in the doctor's room with almost all the emotions I had, I think. Almost like an abused puppy that was rendered really helpless, I hung on to the phone as I walked my way up from the basement which was almost like hell on earth at that very moment. I walked to Macdonalds to get my little one a happy meal for his lunch as I was in no condition to try to get a hot bowl of noodles and feed him that. I hung up the phone when I reached Macdonalds and ordered the happy meal for Jeremiah in between my sobs. The staff very kindly told me to take a seat and served it to us in no time. I sat down with Jeremiah and looked at him. I cut up the nuggets for Jere and he started to eat while I was so affected that I did not feel hungry at all though it was way past lunch time.
Before I had realised, twenty minutes had passed and Tim called me back asking where was I and I said I was still in Macdonald's feeding Jere. Before I hung up the mobile, I saw him approaching us.
Tim: Come! I go and speak to the doctor!
Me: For what? They have given us an appointment to see her in 2 weeks.
Tim: No! I want to know what really happened.
Tim then walked towards the clinic, not realising that the clinic had moved to the basement. I then highlighted to him that the clinic was not where he thought and pointed him the right direction. Not really keen to go back there, I said I'll go to the pharmacy to collect Jeremiah's medicine.
We both then went different directions. I went to the pharmacy to drop off the prescription while Tim headed to the Children's surgery centre at the basement. After dropping the prescription, something in me just told me I should head to the basement, knowing how rash my husband can get and angry when his wife is being seen as bullied. When I reached the basement, Tim said the doctor was still there and they would squeeze him in to speak to the doctor. The staff nurse and the senior staff nurse then saw me and asked how come I was back. I explained that my husband wanted to see the Dr. Then they told me the doctor did not mean what she said and surely I understand that. They then brought me into one of their rooms and told me the dr was a good doctor and she was genuinely concerned and had not meant to hurt me at all and hope I would understand that. I then told them that if an educated person like me was intimidated by them, what more would the uneducated feel? Then I told them not to worry and I don't blame the dr but I really just did not appreciate the accusations at all. Then we went out of the room.
It wasn't too long before we were called into the room of the Dr.
Tim: Dr, what is this? what is this that I hear you don't want to see us anymore.... what is this about a court order? What is this about my wife being charged for neglect and abuse?
Tim almost sounded a little rude I felt in questioning the doctor on what is this.... what is this... what is this....
Dr: No Daddy... you guys gotta make a decision. I really don't know how else I could make your wife come to a decision short of threatening her. I feel I have really failed in what I am doing after 2 years you guys still not decided to do the catheterisation.
I was kinda shocked that the doctor admitted to threatening me.
Tim: No Dr, You definitely did not fail. Everytime I walk out of your clinic, I am very affected and would think of your proposal at least for the next few days.
Dr: Then what is holding you back daddy?
Tim: We are not at peace with it.
Dr: What is holding you back? Shall I arrange for you guys to meet other parents who has done it?
Tim: I must tell you first. We may come back with the same decision. NO CIC. NO VASECOSTOMY.
The doctor seemed kinder or rather a little more cordial and polite to Tim. Why? I don't exactly know the reason but maybe Tim was sounding angry and a little forceful.
It was the same conclusion anyhow to return in 2 weeks with the decision we should have come upon and meet with a parent of similar case of child.
We left the clinic and Tim rushed back to office to continue his important conference that he had left abruptly to stand up for his wife.
Thank You Lord for a husband who loves me so dearly
Lord grant Tim the graciousness, the humility and a forgiving spirit when faced with persecution, trials and tribulations. AMEN!
Friday, June 27, 2008
The Urologist Follow-up
Blogging about the post still disturbs me and hoping that after having done so would help me to let it go.
26th June, Thursday - Jere woke up as usual, I fed him his breakfast, bathed him and changed him. He was really thrilled that he was going to go out. I took him on the train to Novena and then switched to the shuttle bus. We reached the hospital at 1130am in time for our appointment. I knew it was gonna be a long wait and I had bought some nuggets and soya bean for Jere. We then chatted with an enrolled nurse who was doing some administrative work on her computer in an open room. We were in there till about 1pm when finally the nurse stood up and said she will check on when is it gonna be my turn. However, Jere was kept really happy in there chatting with the nurse, given stickers, papers and pens to doodle with the I did not even realise one and half hour had passed. The nurse then came back telling me we would be the next in line so we went outside the room that we were supposed to go to and sat right there. Another 10 min passed and then we were called.
Inside the room of the urologist...
Me: Hello Dr
Dr: Mummy.... You have to make the decision today! 2 options 1. CIC (Clean Intermittent Catheterisation) 2. Vesicostomy (whatever that is!)If you still choose to do neither. You don't need to see me anymore!
I was quite taken aback coz she did not even return my greeting and straightaway told me about how I had to make a decision there and then.
Dr (looking at how shocked I was, carried on): Yes! You gotta make a decision now. Now and NOW! If you still don't want to do anything, I don't want to see you any more!
I was like.... but Dr......
Dr: No! You must make a decision today and we will do it NOW!
Was it that life- threatening???? This really scared me for awhile
Me: No, Dr. I can't make the decision now.
Dr: You have to!
Me: But Dr....
Dr: No! You have to make your decision NOW! CIC or Vesicostomy!My staff nurses has told you how Jeremiah pee right????
Me: No.... Your staff told me that you will speak to me about it.
Dr: Ok the thing here is your son pees only under pressure. He does not sustain a pee properly. He only dribbles. You told us he can pee so we did the 3 hourly observation but you see ( turning to her case notes as if I understood the graphs and numerical values) he can't.
Me: (peering over the case notes, trying to make some sense out of it) what do you mean he can't? so what's the outcome of the observation?
Dr: He cannot pee... mummy.... you gotta start your cic or do the vesicostomy. You gotta make your decision now. Otherwise you don't need to come back. I don't want to see you anymore.
Me: But Dr... I gotta discuss this with my husband. My husband is not here with me today and what do you mean if I don't make my decision now, you don't want to see me anymore?
Dr: I've never managed a case like this where my patient refuse my way of management and if this is so, I don't want to see you anymore
Me: Isn't this a state hospital? A public hospital? If you don't see me, where do I go? Don't a patient have the right to choose their own course of action?
Dr: You know mummy.... you don't want your son to have renal failure and he won't be eligible for a transplant. (sounding a little exasperated)Well, if you don't do the CIC or the vesicostomy, he will. You must know what are the consequences of a neurogenic bladder.
Me: No! He's not gonna have renal failure.
Dr: You don't want him to turn around one day and hate you and blame you for what has happened to him. Really... you have to make your decision today otherwise you don't need to make any more appointment to see me.
Me: What do you mean by that Dr? I can't make a decision today.
Dr: I've given you 2 years!
Me: Yes Dr, but I just don't have the peace about it. Look... just look at our last Urodynamic studies....if you a professional, a consultant, a paediatric specialist, a urologist and your 2 staff nurses and me, a mother.... that makes the four of us, all specialist in our own ways, the way the catheter was being handled then traumatised Jeremiah so much, how do you expect me alone at home to do this? even with the help of a helper, I can't figure how much better can I get.
Dr: Yes. That is because you should have started when he was a baby and accepted the catheterisation as a way of life. Then he wouldn't put up such a struggle. You should have started then mummy. Don't worry. You will manage. We will train you to manage.
I was not convinced at all.
Dr: You know mummy, we can have a court order and in cases like this the parents can be over-ruled. This is neglect and abuse.
Me: No. Dr. I definitely did not neglect or abuse my son.
Dr: Yes. This is neglect and abuse! Taking care of your child does not just mean giving him food to eat and keeping him clean. This is neglect and abuse.
I was trying to keep my calm and looked at Jeremiah as he was getting a little disturbed by the whole atmosphere. Not that I was guilty of the accusation but I definitely did not neglect and abuse my child. If I were to be accused of neglect and abuse, I think I have to be accused of neglect and abuse of myself. All those close to me would definitely agree with me. I have given all I could to my dear son, Jeremiah. I never wanted him to be born this way. But, God definitely has plans for him. Jeremiah is to be exalted of the Lord.
Noticing that this is getting at me as I was keeping quiet this time,the dr continued: Look at his skin! This is neglect and abuse! Why are you not doing anything about the skin??? This is neglect and abuse!
Amidst all this, Jeremiah has sensed the hostility of the situation and started to say, " Out mummy out! I wanna go home!"
Me: No Dr. I have done something. This is not neglect and abuse. I have never neglected or abused my son. NEVER! (tears were welling up in my eyes)
Dr: Look at the skin! It's worst than the last time I saw it! This means he has got no feelings and the abrasion on the floor has caused his skin to peel like that!
Me: No Dr. This is eczema. Jere's got a serious case of eczema and this is already getting better. Last time it was weepy. At least this time it is dry. and yes I am doing something about it.
Dr: NO! LOOK AT THIS!!! ( pointing at the skin and drawing her nurses' attention) You know you can be sued for neglect and abuse?
Me: (my lips already trembling and tears rolling down) Dr, on one hand, I appreciate your professional advice, on the other, I certainly don't appreciate this harshness at all.
Jeremiah was looking at me now and he said: Mummy cry! Mummy cry! Outside! Outside! I wanna go outside! I wanna go home!
Dr: You gotta make a decision today! Either the CIC or the vesicostomy
Me: No Dr, You know I can't. I am not at peace with the CIC and I can't do the vesicostomy. It's irreversible.
Dr: No, it's not irreversible.
Me: Then what's that about?
Dr: It's punching a hole in the bladder and the urine will just flow out into the diaper. He's on diaper anyway so it's very easy management
Me: but the child will be weaned off the diaper one day.
Dr: Not the neurogenic bladder. You gotta decide. You have to do something or this is neglect and abuse.
Me: No Dr. I can't make the decision today. My husband is not here.
Dr: Ok I give you 2 weeks. 2 weeks time, your husband come with you and you make a decision by then. Otherwise I don't want to see you anymore.
Me: But Dr, can we decide on not doing any of these things and just keep monitoring?
Dr: No! Coz that means I have failed in my duty.
Me: No Dr, you have done your part in giving us the options. It's just us that do not want to take up the options and don't patients have the right to decide for themselves?
Dr: Yes. Patients have the right to decide for themselves but you don't want Jeremiah to hate you for making this decision for him right? He's not going to be eligible for a transplant. This is neglect and abuse. We can sue you for this.
I was having quite enough of the same point being repeated to me... what about being sued... neglect and abuse, not eligible for transplant.... renal failure....
Me: Ok Dr. 2 weeks we will come back. Now, can I go if there is nothing else? It's 2pm and my little one is hungry. He has not taken his lunch.
Dr: Ok. 2 weeks time I see you and your husband. Mummy you gotta make a decision. What's the problem here? You need to see the MSW ( Medical Social Worker)? What do you need? We will give you all the support. You must do something! You must do the CIC. Go and read up this 2 weeks about what's the consequences of a neurogenic bladder. Go read up about the vesicostomy and decide.
Me: What if I still decide not to do anything and just monitor? Are you not gonna see us anymore?
Dr: You write here on my case notes that you refuse all options given and sign against it.
Me: (in between sobs) so you will still see us?
Dr: Mummy, you must do the CIC or the vesicostomy. You must do something about his skin. This is neglect and abuse.
Me: Yes I have seen the dermatologist that you referred me to and he's given me nothing but steroids and antihistamines. Dr, I did not neglect or abuse my son.
I was just short of saying... DR STOP ABUSING ME VERBALLY!
I took my bag and decided I needed to go.
Me: Thank you Dr. I think I need to go.
I left the room with the THIS IS NEGLECT AND ABUSE ringing hard in my head.
Still in tears, I made my payment at the counter.
I walked out of the clinic feeling so terrible but reminding myself that I should not hold it to heart and forgive what the doctor had just said to me I told myself if Jesus was persecuted and crucified and still his words while on the cross, he could say, "Forgive them Father for they know not what they do." What I just got is nothing compared to what Jesus had suffered. I was certainly upsetted and affected by what the dr said. Angry? No. I know she's just trying to do her job but can these drs realise we mothers hurt the most when something happen to our child?
Father, help me to put this behind me and move on. Bless the doctors that Jeremiah see and let every word that proceeds from their mouth be a blessing not a curse. AMEN!
I Thank you, Lord,
for the trials that come my way.
In that way I can grow each day
as I let you lead,
And thank you, Lord,
for the patience those trials bring.
In that process of growing,
I can learn to care.
But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.
'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.
I thank you, Lord,
with each trial I feel inside,
that you're there to help,
lead and guide me away from wrong.
'Cause you promised, Lord,
that with every testing,
that your way of escaping is easier to bear.
But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.
'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.
I thank you, Lord,
for the victory that growing brings.
In surrender of everything
life is so worth while.
And I thank you, Lord,
that when everything's put in place,
out in front I can see your face,
and it's there you belong.
26th June, Thursday - Jere woke up as usual, I fed him his breakfast, bathed him and changed him. He was really thrilled that he was going to go out. I took him on the train to Novena and then switched to the shuttle bus. We reached the hospital at 1130am in time for our appointment. I knew it was gonna be a long wait and I had bought some nuggets and soya bean for Jere. We then chatted with an enrolled nurse who was doing some administrative work on her computer in an open room. We were in there till about 1pm when finally the nurse stood up and said she will check on when is it gonna be my turn. However, Jere was kept really happy in there chatting with the nurse, given stickers, papers and pens to doodle with the I did not even realise one and half hour had passed. The nurse then came back telling me we would be the next in line so we went outside the room that we were supposed to go to and sat right there. Another 10 min passed and then we were called.
Inside the room of the urologist...
Me: Hello Dr
Dr: Mummy.... You have to make the decision today! 2 options 1. CIC (Clean Intermittent Catheterisation) 2. Vesicostomy (whatever that is!)If you still choose to do neither. You don't need to see me anymore!
I was quite taken aback coz she did not even return my greeting and straightaway told me about how I had to make a decision there and then.
Dr (looking at how shocked I was, carried on): Yes! You gotta make a decision now. Now and NOW! If you still don't want to do anything, I don't want to see you any more!
I was like.... but Dr......
Dr: No! You must make a decision today and we will do it NOW!
Was it that life- threatening???? This really scared me for awhile
Me: No, Dr. I can't make the decision now.
Dr: You have to!
Me: But Dr....
Dr: No! You have to make your decision NOW! CIC or Vesicostomy!My staff nurses has told you how Jeremiah pee right????
Me: No.... Your staff told me that you will speak to me about it.
Dr: Ok the thing here is your son pees only under pressure. He does not sustain a pee properly. He only dribbles. You told us he can pee so we did the 3 hourly observation but you see ( turning to her case notes as if I understood the graphs and numerical values) he can't.
Me: (peering over the case notes, trying to make some sense out of it) what do you mean he can't? so what's the outcome of the observation?
Dr: He cannot pee... mummy.... you gotta start your cic or do the vesicostomy. You gotta make your decision now. Otherwise you don't need to come back. I don't want to see you anymore.
Me: But Dr... I gotta discuss this with my husband. My husband is not here with me today and what do you mean if I don't make my decision now, you don't want to see me anymore?
Dr: I've never managed a case like this where my patient refuse my way of management and if this is so, I don't want to see you anymore
Me: Isn't this a state hospital? A public hospital? If you don't see me, where do I go? Don't a patient have the right to choose their own course of action?
Dr: You know mummy.... you don't want your son to have renal failure and he won't be eligible for a transplant. (sounding a little exasperated)Well, if you don't do the CIC or the vesicostomy, he will. You must know what are the consequences of a neurogenic bladder.
Me: No! He's not gonna have renal failure.
Dr: You don't want him to turn around one day and hate you and blame you for what has happened to him. Really... you have to make your decision today otherwise you don't need to make any more appointment to see me.
Me: What do you mean by that Dr? I can't make a decision today.
Dr: I've given you 2 years!
Me: Yes Dr, but I just don't have the peace about it. Look... just look at our last Urodynamic studies....if you a professional, a consultant, a paediatric specialist, a urologist and your 2 staff nurses and me, a mother.... that makes the four of us, all specialist in our own ways, the way the catheter was being handled then traumatised Jeremiah so much, how do you expect me alone at home to do this? even with the help of a helper, I can't figure how much better can I get.
Dr: Yes. That is because you should have started when he was a baby and accepted the catheterisation as a way of life. Then he wouldn't put up such a struggle. You should have started then mummy. Don't worry. You will manage. We will train you to manage.
I was not convinced at all.
Dr: You know mummy, we can have a court order and in cases like this the parents can be over-ruled. This is neglect and abuse.
Me: No. Dr. I definitely did not neglect or abuse my son.
Dr: Yes. This is neglect and abuse! Taking care of your child does not just mean giving him food to eat and keeping him clean. This is neglect and abuse.
I was trying to keep my calm and looked at Jeremiah as he was getting a little disturbed by the whole atmosphere. Not that I was guilty of the accusation but I definitely did not neglect and abuse my child. If I were to be accused of neglect and abuse, I think I have to be accused of neglect and abuse of myself. All those close to me would definitely agree with me. I have given all I could to my dear son, Jeremiah. I never wanted him to be born this way. But, God definitely has plans for him. Jeremiah is to be exalted of the Lord.
Noticing that this is getting at me as I was keeping quiet this time,the dr continued: Look at his skin! This is neglect and abuse! Why are you not doing anything about the skin??? This is neglect and abuse!
Amidst all this, Jeremiah has sensed the hostility of the situation and started to say, " Out mummy out! I wanna go home!"
Me: No Dr. I have done something. This is not neglect and abuse. I have never neglected or abused my son. NEVER! (tears were welling up in my eyes)
Dr: Look at the skin! It's worst than the last time I saw it! This means he has got no feelings and the abrasion on the floor has caused his skin to peel like that!
Me: No Dr. This is eczema. Jere's got a serious case of eczema and this is already getting better. Last time it was weepy. At least this time it is dry. and yes I am doing something about it.
Dr: NO! LOOK AT THIS!!! ( pointing at the skin and drawing her nurses' attention) You know you can be sued for neglect and abuse?
Me: (my lips already trembling and tears rolling down) Dr, on one hand, I appreciate your professional advice, on the other, I certainly don't appreciate this harshness at all.
Jeremiah was looking at me now and he said: Mummy cry! Mummy cry! Outside! Outside! I wanna go outside! I wanna go home!
Dr: You gotta make a decision today! Either the CIC or the vesicostomy
Me: No Dr, You know I can't. I am not at peace with the CIC and I can't do the vesicostomy. It's irreversible.
Dr: No, it's not irreversible.
Me: Then what's that about?
Dr: It's punching a hole in the bladder and the urine will just flow out into the diaper. He's on diaper anyway so it's very easy management
Me: but the child will be weaned off the diaper one day.
Dr: Not the neurogenic bladder. You gotta decide. You have to do something or this is neglect and abuse.
Me: No Dr. I can't make the decision today. My husband is not here.
Dr: Ok I give you 2 weeks. 2 weeks time, your husband come with you and you make a decision by then. Otherwise I don't want to see you anymore.
Me: But Dr, can we decide on not doing any of these things and just keep monitoring?
Dr: No! Coz that means I have failed in my duty.
Me: No Dr, you have done your part in giving us the options. It's just us that do not want to take up the options and don't patients have the right to decide for themselves?
Dr: Yes. Patients have the right to decide for themselves but you don't want Jeremiah to hate you for making this decision for him right? He's not going to be eligible for a transplant. This is neglect and abuse. We can sue you for this.
I was having quite enough of the same point being repeated to me... what about being sued... neglect and abuse, not eligible for transplant.... renal failure....
Me: Ok Dr. 2 weeks we will come back. Now, can I go if there is nothing else? It's 2pm and my little one is hungry. He has not taken his lunch.
Dr: Ok. 2 weeks time I see you and your husband. Mummy you gotta make a decision. What's the problem here? You need to see the MSW ( Medical Social Worker)? What do you need? We will give you all the support. You must do something! You must do the CIC. Go and read up this 2 weeks about what's the consequences of a neurogenic bladder. Go read up about the vesicostomy and decide.
Me: What if I still decide not to do anything and just monitor? Are you not gonna see us anymore?
Dr: You write here on my case notes that you refuse all options given and sign against it.
Me: (in between sobs) so you will still see us?
Dr: Mummy, you must do the CIC or the vesicostomy. You must do something about his skin. This is neglect and abuse.
Me: Yes I have seen the dermatologist that you referred me to and he's given me nothing but steroids and antihistamines. Dr, I did not neglect or abuse my son.
I was just short of saying... DR STOP ABUSING ME VERBALLY!
I took my bag and decided I needed to go.
Me: Thank you Dr. I think I need to go.
I left the room with the THIS IS NEGLECT AND ABUSE ringing hard in my head.
Still in tears, I made my payment at the counter.
I walked out of the clinic feeling so terrible but reminding myself that I should not hold it to heart and forgive what the doctor had just said to me I told myself if Jesus was persecuted and crucified and still his words while on the cross, he could say, "Forgive them Father for they know not what they do." What I just got is nothing compared to what Jesus had suffered. I was certainly upsetted and affected by what the dr said. Angry? No. I know she's just trying to do her job but can these drs realise we mothers hurt the most when something happen to our child?
Father, help me to put this behind me and move on. Bless the doctors that Jeremiah see and let every word that proceeds from their mouth be a blessing not a curse. AMEN!
I Thank you, Lord,
for the trials that come my way.
In that way I can grow each day
as I let you lead,
And thank you, Lord,
for the patience those trials bring.
In that process of growing,
I can learn to care.
But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.
'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.
I thank you, Lord,
with each trial I feel inside,
that you're there to help,
lead and guide me away from wrong.
'Cause you promised, Lord,
that with every testing,
that your way of escaping is easier to bear.
But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.
'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.
I thank you, Lord,
for the victory that growing brings.
In surrender of everything
life is so worth while.
And I thank you, Lord,
that when everything's put in place,
out in front I can see your face,
and it's there you belong.
Friday, June 20, 2008
How old are you?
17th June - Jere went for some observation tests at KKH.
One of the nurses asked, "How old are you?"
Jere went "Eighteen months!"
The nurse was so amused and asked if Jere was really 18 months?
I said "oh.. no! I don't exactly know why he said that but he's coming 2 in 2 weeks' time"
The nurse just could not get over it that she went to tell her colleagues. Soon we had like all the clinic's nurses coming to ask, "How old are you?" and Jere never failed them with "EIGHTEEN MONTHS!"
One of the nurses asked, "How old are you?"
Jere went "Eighteen months!"
The nurse was so amused and asked if Jere was really 18 months?
I said "oh.. no! I don't exactly know why he said that but he's coming 2 in 2 weeks' time"
The nurse just could not get over it that she went to tell her colleagues. Soon we had like all the clinic's nurses coming to ask, "How old are you?" and Jere never failed them with "EIGHTEEN MONTHS!"
Friday, March 21, 2008
Creeping aka Doggy crawl?
Well, actually he first started creeping when we were at Pattaya, Thailand. We were so excited to see him creeping then.
We were so so fascinated! That was 4th November 2007! Praise the Lord! Alleluia! He is doing very much on this now. Whenever he crawls on his tummy, we would tell him "Jere, up and creep!" and he would do just this! Praise the Lord for the strength that Jere is getting! and his accomplishments everyday!
We were so so fascinated! That was 4th November 2007! Praise the Lord! Alleluia! He is doing very much on this now. Whenever he crawls on his tummy, we would tell him "Jere, up and creep!" and he would do just this! Praise the Lord for the strength that Jere is getting! and his accomplishments everyday!
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