During Xinxin's treatment, we are very fortunate to find two NB family group.
One is an international one--parents,relatives of NB and even including some doctors and volunteers.In this group, there are families who win the battle, who are doing treatment, who are you fighting the relapsed beast and who have lost their dear kids like us. You can find answers to any questions you can think of very fast and effectively because there are thousands of parents there, yes I forgot to mention about the patients--some long time survivor are as old as my age or even older.
The other group is made up of all the NB parents in China who are doing treatment. It's quite different, this group, I am the only one who lost the kid. Because parents will quit and never appear in this group once they lost the battle or give up treating.There are quite a number of kids were given up because of various reasons in China which I seldom see in other countries. I guess it must be very painful for the parents to make the decision.
I had a very busy day talking with NB parents in China through net.We were discussing why our kids have NB the whole day. Mainly they believe two reasons--genes and medication from abortion before the NB kid. I don't agree with either one. As for as I know,nobody had cancer in my husband and my family. Xinxin is our first and very precious baby. Of course every kid is precious of the parents, but to us, Xinxin is really precious, because my husband's blood type and mine will cause some problem if we try to have more later. I don't know what exactly problem it will be because at that time I never thought I would have more than one as China's family plan--one couple one kid.
We are still asking Whys and Hows, and my husband tells me that he would do research in childhood research if time could go back to ten years ago. I always laugh at him" who do you think you are? Can find a cure for NB?" "At least we could diagnose her earlier" Yes, what if Xinxin could be diagnosed earlier? Who knows? Time definitely cannot go back, we have to look forward,but we just can't help thinking...
April 13th,2009 Monday
There were two pictures in my brain every night when I lie on the bed. One is the picture my husband carried Xinxin in KKH with my father beside them.They were waiting me to come back from work. It was the first time in KKH before she was diagnosed with NB. Xinxin looked very pale and tired, but she was very happy to see me.
The other one is that Xinxin was sitting on the legs of an old man. It appeared one week ago when I was brushing my teeth before sleep. I tried to see how the man looked like, but I couldn't, I only remember clearly that the man is in white. I tried very hard to figure out what message it means.
Here is a nice sharing from my friend Jinyuan. Please read it and hope it helps you when you meet something frustrating. It does help me.
Have you ever observed the behaviour of birds in the face of adversity?
For days and days they make their nests, sometimes gathering materials brought from far away
And when they have completed the nest and are ready to
lay eggs, the weather, or the work of humans, or some
animal, destroys it, and it falls to the ground, all that they
have done with so much effort
Do they stop ?
Bewildered, and leave the work ?
No way. They start over building the nest again and again
until they have eggs in the nest again.
Sometimes,and very often before the chicks are are hatched, an animal, a child, or a storm destroys the nest once again, but this time with its valuable contents.
It hurts to go back to begin again… Even so, the birds do not ever stop, they continue to sing and build, and keep singing and building…..
Do you sometimes get the feeling that your life, your work, your family is not what you had dreamed. Do you sometimes want to say “enough”, the effort is not worthwhile. It is all too much for me!
Are you tired of it all? Do you feel that the daily struggle is a waste of time, your trust has been betrayed, your goals not reached just as you were about to get them?
Life strikes you down sometimes, but do you go on, say a
prayer, put your faith in hope, not darkness? Do not worry
if you get injured in the battle, that is to be expected. Gather
yourself together and rebuild your life,
so that it runs well again.
No matter what happens… Do not shrink back, but move forward. Life is a constant challenge, but it is worthwhile
to mostly accept it. And never stop singing
The other one is that Xinxin was sitting on the legs of an old man. It appeared one week ago when I was brushing my teeth before sleep. I tried to see how the man looked like, but I couldn't, I only remember clearly that the man is in white. I tried very hard to figure out what message it means.
Here is a nice sharing from my friend Jinyuan. Please read it and hope it helps you when you meet something frustrating. It does help me.
Have you ever observed the behaviour of birds in the face of adversity?
For days and days they make their nests, sometimes gathering materials brought from far away
And when they have completed the nest and are ready to
lay eggs, the weather, or the work of humans, or some
animal, destroys it, and it falls to the ground, all that they
have done with so much effort
Do they stop ?
Bewildered, and leave the work ?
No way. They start over building the nest again and again
until they have eggs in the nest again.
Sometimes,and very often before the chicks are are hatched, an animal, a child, or a storm destroys the nest once again, but this time with its valuable contents.
It hurts to go back to begin again… Even so, the birds do not ever stop, they continue to sing and build, and keep singing and building…..
Do you sometimes get the feeling that your life, your work, your family is not what you had dreamed. Do you sometimes want to say “enough”, the effort is not worthwhile. It is all too much for me!
Are you tired of it all? Do you feel that the daily struggle is a waste of time, your trust has been betrayed, your goals not reached just as you were about to get them?
Life strikes you down sometimes, but do you go on, say a
prayer, put your faith in hope, not darkness? Do not worry
if you get injured in the battle, that is to be expected. Gather
yourself together and rebuild your life,
so that it runs well again.
No matter what happens… Do not shrink back, but move forward. Life is a constant challenge, but it is worthwhile
to mostly accept it. And never stop singing
April 4th,2009 Saturday
Today is Tomb-sweeping Day in China. It is a public holiday for people to sweep the relatives' tombs-to burn some paper considered as the money for the dead. Usually on this day it rains,but not today since it rained a few days ago.But I still feel quite cold in the morning--wearing sweaters ad thick jacket still.
As Christian, I didn't burn any paper for my daughter, because I know she doesn't need it at all in heaven, and some more, she doesn't have a tomb yet.We keep Xinxin's ashes in HK now.As my husband's family think it's bad luck to bring it to his home (I can't understand why), and it's really hard to talk with them, we decided to keep Xinxin at our own home and bring her wherever we go later until the day my husband or I die, then we can be put together.
I got the picture of a coverlet for Xinxin with many friends' hands print on just now. It was sewn and put together by my friend--Anne from USA. It is very touching to have this gift. My friend Anne doesn't know any of this friends in Singapore, but she managed to contact my friend Emily in Singapore and sent all the materials to her. Then I guess Emily called and emailed some of my friends she also knows to do the hand prints and collected them and sent to Anne. The coverlet didn't reach to us as the friends had so much work to do, but I am sure Xinxin knows it and loves it. Thank you so much for taking your time to give us such a wonderful gift, I will keep it with me and bring it to her until the day I go to meet her again.
As Christian, I didn't burn any paper for my daughter, because I know she doesn't need it at all in heaven, and some more, she doesn't have a tomb yet.We keep Xinxin's ashes in HK now.As my husband's family think it's bad luck to bring it to his home (I can't understand why), and it's really hard to talk with them, we decided to keep Xinxin at our own home and bring her wherever we go later until the day my husband or I die, then we can be put together.
I got the picture of a coverlet for Xinxin with many friends' hands print on just now. It was sewn and put together by my friend--Anne from USA. It is very touching to have this gift. My friend Anne doesn't know any of this friends in Singapore, but she managed to contact my friend Emily in Singapore and sent all the materials to her. Then I guess Emily called and emailed some of my friends she also knows to do the hand prints and collected them and sent to Anne. The coverlet didn't reach to us as the friends had so much work to do, but I am sure Xinxin knows it and loves it. Thank you so much for taking your time to give us such a wonderful gift, I will keep it with me and bring it to her until the day I go to meet her again.
April 2nd,2009 Thursday
Last night, I couldn't fell asleep. I cried for a while, then I looked at Xinxin's photos and cried for more time. And yesterday for the first time I wrote a friend to tell her that I don't want to believe in God any more as He allows all these happened to a helpless kid. In the morning, I got an Email from another friend--Emily. Please read part of it:
Dear Joy,
I love Xinxin's baby photos. She's so cute. What Xinxin went through was a lot of pain and suffering but remember, her suffering is not in vain. She suffered for a good reason which sometimes we do not know. In her suffering, both herself and you got to know God. In her suffering, it might have planted a seed of Jesus in someone's heart whom we do not know. In her suffering, it drew your family closer and friends nearer too. It is not in vain and God will reward her greatly in heaven. It's just remind me like how Jesus suffered. Yes, he died for our sins but must he be tortired so badly and put through so much pain and shame and then he still die. but all these are for a purpose, to redeem us, to die for our sins. So what XinXin has gone through, it is for a purpose. It is very hard for a parent to bear and the helplessness.
.......
Xin Xin is special and she is chosen. It is heartbreaking for us as parents no doubt but I suppose that's how Mary must have felt when Jesus died on the cross. Maybe God want us as parents to go through such suffering with our children and hence, we can be more compassionate to others in suffering and need of help.
.......
Take care,
Emily
After reading the email, I feel guilty and it reminds me of the things that I almost forgot how God helps us during Xinxin's treatment. And it reminds me everything I should already learn from Xinxin's suffering.
Last year today(April 2nd,2008), Xinxin wake up every early in KKH without eating anything because I told her that she was going to have a "Check-Up". She looked quite brave and didn't complain anything.
We send her to the second floorof KKH at 8:00 am from the ward.
We met her like this at 9+pm in ICU.
Our dear doctor--Mr.Chui Chanhon did his best to do the surgery for Xinxin.A lot of friends were praying for Xinxin and some friends came to KKH to stay with us on this day.
My husband and I couldn't help crying to SEE her call "mummy,carry me", because she cannot talk, we can only guess it from the shape of her mouth.
Dear Joy,
I love Xinxin's baby photos. She's so cute. What Xinxin went through was a lot of pain and suffering but remember, her suffering is not in vain. She suffered for a good reason which sometimes we do not know. In her suffering, both herself and you got to know God. In her suffering, it might have planted a seed of Jesus in someone's heart whom we do not know. In her suffering, it drew your family closer and friends nearer too. It is not in vain and God will reward her greatly in heaven. It's just remind me like how Jesus suffered. Yes, he died for our sins but must he be tortired so badly and put through so much pain and shame and then he still die. but all these are for a purpose, to redeem us, to die for our sins. So what XinXin has gone through, it is for a purpose. It is very hard for a parent to bear and the helplessness.
.......
Xin Xin is special and she is chosen. It is heartbreaking for us as parents no doubt but I suppose that's how Mary must have felt when Jesus died on the cross. Maybe God want us as parents to go through such suffering with our children and hence, we can be more compassionate to others in suffering and need of help.
.......
Take care,
Emily
After reading the email, I feel guilty and it reminds me of the things that I almost forgot how God helps us during Xinxin's treatment. And it reminds me everything I should already learn from Xinxin's suffering.
Last year today(April 2nd,2008), Xinxin wake up every early in KKH without eating anything because I told her that she was going to have a "Check-Up". She looked quite brave and didn't complain anything.
We send her to the second floorof KKH at 8:00 am from the ward.
We met her like this at 9+pm in ICU.
Our dear doctor--Mr.Chui Chanhon did his best to do the surgery for Xinxin.A lot of friends were praying for Xinxin and some friends came to KKH to stay with us on this day.My husband and I couldn't help crying to SEE her call "mummy,carry me", because she cannot talk, we can only guess it from the shape of her mouth.
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