Letter to Angel without wings - Royal Alex

julia.ganesh

You are a great nurse, I wish I could run into you when delivering my 2nd child.
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My own experience with Royal Alex is quite …... September 29, 2008, I delivered my daughter (2 months pre-mature) through c-section in Royal Alex. My doctor Dr. Langton, 65 some years old and he is awesome.

' ?" ~! C4 R. [& ^7 J6 A; qMy husband and I were told that the child might have some issues 2 hours before the delivery. But we never imagine that the baby was late diagnosed with a very rare genetic-linked brains malfunction. I am a Chinese and my husband is originally from south America; what an odd to run into such a rare genetic disorder.
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The baby was immediately taken to NICU and stayed there for over 2 months. My husband and I had no relatives in town; our life were living in hell during those days. We were told the final diagnose by Dr. Lee on Oct. 18, 2008 in a small conference room outside the NICU. “You two are great parents and I am very sorry to tell you that your daughter is never going to talk, walk, eat by herself and she might never know who is mother and who is father. Kids with LSR Type 1 usually only lives 2-3 years. You will still get enough support from NICU and follow-up clinics from time to time; however, there is no treatment available for this disease.”  I can’t recall what exactly my husband and I did after hearing that bad news. All I can feel is pain! A pain until this day is still hunting me day in - day out.
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Because my daughter’s condition is so rare, lots of nurses in the NICU don’t know how to handle. The head nurse had to print out a paper to educate young nurses about this particular disease. Most nurses were quite nice to us and tried to comfort us as much as possible. But there are still some mean ones; who I don’t understand why they become nurses at the first place. One day, I was holding my daughter and crying (I cried non-stops for the first 3 months). A nurse came to me and said, “I know it’s hard to accept. She looks so beautiful and normal. Imagine it’s just like I am saying you are a retard. But you don’t look like one. So it's even harder for you accept the fact that you are a retard. ”

5 C: g# q( f, p7 Z5 |I was ready to kill her at that moment. But I simply said, “I have been living in Canada over ten years; I have a great job and a master degree. I am pretty sure that I am not a retard. My husband is quite successful in his field too. And our daughter has a genetic disorder; she is not a retard. As a health professional working in the infant care unit, shame on you for not having a heart.”  That nurse (prefer not naming her) never shows up my daughters’ bedside after that.

0 l+ X2 o- Z3 v" ]" W" EThis is the first time I share my special baby story; it brought back too much sorrow and pain. Today, my daughter is under my husband and my great care at home; despite all her sickness, she is beautifully growing. I always believe in love and respect life. My daughter is wonderful and I am so thankful that she teaches me how to be a better mother everyday with no condition, no return and no hope.
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Thanks for being a great nurse and please keep the good work going for mothers, especially unfortunate ones like me. We rely on your skills and care to live through the darkest moment in their life.
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& `% [9 K+ [/ L: HJulia

今夜无眠

刚下夜班， 习惯性的打开电脑。你的信跃入我的眼帘。 看完你的信， 我久久不能平静。 我克制自己不让我的眼泪流出来， 它还是不争气的流了出来。 非常感谢你的信任， 非常感谢你能与大家分享你的故事和经历。这一切都需要一个妈妈多大的爱和勇气啊。我感受到你内心的痛。我的任何语言在你面前都是苍白的。一个妈妈怀胎十月， 有着多少的欢乐和期望，却被深深的失望和刺骨的痛取代着。 而这痛， 正是源于你对女儿的最无私的爱。 你和你的丈夫是天下最伟大的爸爸， 妈妈。 也许你的女儿永远不会开口叫爸爸， 妈妈， 但她的哭， 她的笑， 都会牵动你的心。 她，是另一个我们并不了解的世界里的精灵。
再一次感叹生命的神奇与脆弱。昨晚， 当我从医生手中接过一个没有呼吸的小宝宝（脐带绕颈）， 我的心跳在那一刻也近停止。我STIMULATED THE BABY， 我叫着COME ON, CRY... 我不能形容当我听到他的哭声的时候的心情， 我只知道当我拖着沉重的脚步走出医院大楼的时候， 我欣慰的看到迎接我的一缕阳光，小鸟在飞， 小草在努力的拱出草地。。。 生命真美好。

朝阳

every story is a beautiful one.

julia.ganesh

Don't know how to post photos here; otherwise, I would like to post some of my daughter's pictures. People say one picture is more powerful than 1000 words. My daughter could be a living proof of how much the difference a loving doctor or nurse can make in a most fragile life.

[ 本帖最后由 julia.ganesh 于 2009-4-12 15:50 编辑 ]

今夜无眠

原帖由 julia.ganesh 于 2009-4-12 15:48 发表
Don't know how to post photos here; otherwise, I would like to post some of my daughter's pictures. People say one picture is more powerful than 1000 words. My daughter could be a living proof of how  ...

2 L# n9 W# W* T$ O! |) @' ^期待着看你的小精灵的照片。 不知道哪位能帮帮忙， 看看怎样能把照片传上来。

西子妈妈

加油

Eunice.kk

我是一只鱼

睡懒觉的闹钟

回LZ，要是你愿意，你可以把照片发给我，我帮你传 ylsnphh@hotmail.com

julia.ganesh

My daughter had another seizure yesterday, so I got completely tied up. It terms of posting my daughter's photos, my husband has a different point of view. He is a very protective father and I have to consider his feelings. Therefore, I can only thanks for all your understanding and support.
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6 @& q6 J  [7 p, DIn addition, I would like to ask for some advices about safe pregnancy. Is there any tests can be done to rule out potential gene-related diseases at early pregnancy (9 - 12 weeks)? Thanks a million!

julia.ganesh

Thanks for the flowers!

今夜无眠

原帖由 julia.ganesh 于 2009-4-16 18:41 发表
# f" u5 M2 v. X! fMy daughter had another seizure yesterday, so I got completely tied up. It terms of posting my daughter's photos, my husband has a different point of view. He is a very protective father and I have to ...

% N3 |: K2 T* b- N! c3 Q/ O3 u当知道你的女儿又一次SEIZURE后， 我也一样很难过。 这几天一直很关心你和你的宝宝怎样了。 尽管我们没有看到她的照片， 我一样知道她很漂亮可爱。我同样理解你的老公， 他是一个好丈夫， 好父亲。 关于你问的另一个问题， ROYAL ALEX 有GENETIC CONSULT. 我连续两周的夜班， 下班时， 他们还没上班。你的OBSTETRICIAN 可以帮你们约一个APPOINTMENT. 我会在这一直支持你。

今夜无眠

原帖由 julia.ganesh 于 2009-4-16 18:41 发表
My daughter had another seizure yesterday, so I got completely tied up. It terms of posting my daughter's photos, my husband has a different point of view. He is a very protective father and I have to ...

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这几天在网上没有看到你， 你和宝宝还好吗？我希望你可以把我当作一个没见过面的朋友， 我很愿意分享你的快乐和伤心。 我昨晚查了一些资料， 又咨询了有经验的医生和护士。希望这些信息会对你有帮助。
, B9 ?1 J4 S7 x+ N2 B( @1.        建议在怀孕前去见你的家庭医生或妇科医生， 他们会推荐你去见GENETIC COUNSELLOR。记得是怀孕前。 PERINATAL GENETIC COUNSELLOR 在ROYAL ALEX MATERNAL FETAL MEDICINE CENTRE, 一楼。地址和电话如下：
Royal Alexandra Hospital
10240 Kingsway
Edmonton
T5H 3V9
$ C+ j2 E4 |' z4 b. F. FCanada
: J/ E4 X3 l/ d5 b( `7 `Phone: 780-735-4813
Fax: 780-735-4814
提供两个COUNSELLORS 的INFORMATION:
5 O/ e, L1 H7 p7 rCynthia Handford
Phone: 780-735-6948
Fax: 780-735-4814
Email: cynthia.handford@capitalhealth.ca

Susan Christian
7 r$ p8 \1 U3 z/ jPhone: 780-407-1015
Fax: 780-407-1761
Email: susanchristian@cha.ab.ca
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4 A" u/ R/ a+ o. L( q7 d3 y! B- l2.        若怀孕的情况下， 尽快见你的专科医生， 最大的可能， 他们会做一些TESTS, 包括羊膜穿刺amniocentesis。
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若有其他疑问，我可以同你一起找出答案。 若你想找个朋友说说话， 我随时恭候。

julia.ganesh

I really appreciate all your help and support!

julia.ganesh

My husband doesn't read any chinese and he only looks at photos while I am checking up some chinese website. He saw your daughter's photo under your ID earlier and insisted me to tell you that your daughter is very very beautiful. (As the matter of fact, my daughter looks a bit like your daughter but much thinner. And she has excately the same pink outfit you have on the left photo.)

julia.ganesh

原帖由 今夜无眠 于 2009-4-19 14:51 发表
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0 m3 H& ?- ~* t这几天在网上没有看到你， 你和宝宝还好吗？我希望你可以把我当作一个没见过面的朋友， 我很愿意分享你的快乐和伤心。 我昨晚查了一些资料， 又咨询了有经验的医生和护士。希望这些信息会对你有帮助。
. ~6 a' ?4 f+ X1.        建议 ...

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Following your advices, I started making CVS and ultrasound appointments through my doctor. Yesterday, I went for genetic consultation at U of A hospital and was told the risk of having another baby with Lis I is quite slim since both parents are non carriers. Since there is no extra helps available; my almost 7 months daughter follows me everywhere I go. I feel really guilty of putting  her in the car seat and stroller running around all the time. But she is such a good baby and doesn't complain much. The bonus part is my daughter continues gainning weight and making sounds.  
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% A# m) X1 A5 Q( G$ bThanks again for all the help, I'll keep you posted.

西子妈妈

原帖由 julia.ganesh 于 2009-4-24 17:21 发表
  ?: d; W& o' nMy husband doesn't read any chinese and he only looks at photos while I am checking up some chinese website. He saw your daughter's photo under your ID earlier and insisted me to tell you that your da ...

真的吗? 赫赫,帮我家的小TEALA谢谢你老公哦, 你啥时也把你家的给发上来,我也给我家大熊看看
小姑娘都是爸爸的心肝宝贝,对吧
TEALA 的这套粉色小洋装,是一位可爱的小阿姨送的

今夜无眠

原帖由 julia.ganesh 于 2009-4-24 17:40 发表


Following your advices, I started making CVS and ultrasound appointments through my doctor. Yesterday, I went for genetic consultation at U of A hospital and was told the risk of having another ba ...

/ O- [. \/ f8 R6 E4 p6 a关注中。 怀孕的时候注意心情和身体。 小心病毒性感冒。。

julia.ganesh

原帖由 今夜无眠 于 2009-4-19 14:51 发表


( M! T! ]2 e3 j这几天在网上没有看到你， 你和宝宝还好吗？我希望你可以把我当作一个没见过面的朋友， 我很愿意分享你的快乐和伤心。 我昨晚查了一些资料， 又咨询了有经验的医生和护士。希望这些信息会对你有帮助。
" W, v7 p; u. g1.        建议 ...

4 i# Z1 }2 C7 K. A  E1 u9 S# DMy daughter had two unusual seizures earlier this morning. Her face actually turned blue for a good 10 seconds even through I opened her airway. It was obvious she was struggling with breathing. I immediately made several calls to her pediatrician and neurologist; unfortunately, her pediatrician is on vacation until May 6; both neurologist and his assistant are not responding my calls. Checked with my daughter's home care nurses and decided to pay a visit to emergency.

, u4 O: ]; @2 _* |. mIt was a good morning turning bad. I guess I am going to spend the rest of day in the UofA emergency now. 今夜无眠, do you know any side-effect for putting a 7 month old on seizure medicine besides slowing down the brain activities. I am concerned about the dose amount which will have a negative impact on her brain.

西子妈妈

原帖由 julia.ganesh 于 2009-4-28 12:23 发表
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My daughter had two unusual seizures earlier this morning. Her face actually turned blue for a good 10 seconds even through I opened her airway. It was obvious she was struggling with breathing. I ...

" Z9 k2 G  Y5 b4 v: X; t希望小姑娘感觉好起来

麒麟电视

原帖由 julia.ganesh 于 2009-4-28 12:23 发表
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: m$ c3 W" r- NMy daughter had two unusual seizures earlier this morning. Her face actually turned blue for a good 10 seconds even through I opened her airway. It was obvious she was struggling with breathing. I ...

: }' X& M+ y' P2 q3 l6 j" e看了你的信息, 我真的很难过. 不知到怎样回复才好.父母明天要回国了,今天拉我聊天聊到了现在, 我才有时间静静的坐下来回复你. 我想关于宝宝的病情,你比我更清楚. 大脑的神经传输有阻碍, 宝宝才会SEIZURE. 你做了一切你可以做的, 包括OPEN HER AIRWAY, 保证他的安全. 你真的很了不起. 若再有这样的情况, 你不用打电话给医生和护士, 直接打911. 急救人员在需要的情况下可以INCUBATE BABY RIGHT WAY. 关于你问的药物问题, 所有的药物都有副作用, 特别是对宝宝. 但不用, 她的损害会更大. 也许SEIZURE会越来越频繁, 一定多关注她的呼吸系统. 我想你一定很累了. 也要给自己一个BREAK. 我想很多姐妹想帮你分担一下, 我也是其中的一个. 另外, 你不妨联系一下respite CARE. 自己去呼吸一下新鲜空气, 你另一个宝宝也要有一个健康的妈妈. 我一直在关注你, 下星期我上白班, 下班后看你的消息. TAKE CARE!

julia.ganesh

Regarding to 911, my daughter is not currently covered by blue cross and her coverage was declined by blue cross when she was 45 days old because of her medical conditions. Therefore, every 911 call costs us around $300 to $350. We have called 911 several times since my daughter came home in Nov 08 and slowly found out 911 wasn't that beneficial to us both financially and speed-wise. Most EMS staff never heard of Lis; it usually turned out to be that my husband and I lecture EMS staff about my daughter's disorder.

. H+ Z8 d3 b& ], o- G3 [She is now hospitalized at UofA after taking her to emergency yesterday. Meanwhile, she feels much better and under close monitoring by docs and nurses. I just came back home to get her staff and also finish my work (due today). My husband is away on business trip, basically I'm on my own this time. My husband was crying on the phone and calling me non-stops since I took daughter to the emergency. It's quite heart-broken to hear a tough guy tears up thousands miles away! Anyway, long story short. I had to play the strong one and fight with emergency nurses to get my daughter enrolled ASAP. They gave me hard time at the beginning and telling me to clam down.
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& Y& C7 z. C* ^0 m. J: L7 v"Seizure is ok, you have to wait in line!"  
( R9 S4 m+ d: O* @: ~: y; h" M; T"Fuck that! She has a rare brain dis-order and her seizures are abnormal today! I need to see a doctor right now!"
"Clam down! You need to clam down!"
: P* Z! o( ?" n+ l! G8 @& C; M$ h* H"Believe me! I am living with her seizures everyday. Here, She is getting another one!"
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# U4 u) X# Z5 c( q9 C! O2 K! HI wonder what takes to make a nurse to trust parents' instinct. Anyway, everything is under control now.

" c- Y) D* \( T5 AThanks for all your help as always. Later!
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! q; `/ O  {5 Y; T9 Y4 [[ 本帖最后由 julia.ganesh 于 2009-4-29 19:42 编辑 ]

今夜无眠

我真的不敢相信BLUE CROSS 会拒绝提供宝宝的保险. 而U OF A 的急诊是出奇的慢我是知道的. 因为医生和护士,加上病房的短缺造成了现在的局面, 这是加拿大医疗系统的弊端. 你一个人在家一定很辛苦. 我今天送走了父母, 希望可以为你做点什么. 我老公明天在家, 若需要的话, 他可以开车接送你. 希望宝宝平安无事. 希望你们一家人能快乐健康的在一起.
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你尽可能的休息, 医院的环境不好, 你的抵抗力也一定很弱了. 病毒性的流感对你和胎儿都有影响. 一定要预防. 你有我的电话吗? 欢迎你随时来电话.

julia.ganesh

Again, I can't thank you enough. Everything is under control now. I even found a way to get access to internet and continue working at stollery hospital. A big bonus!

People in my situation do pray a lot; but I am pretty much a non-religious person. I recently found out that coming here and writing down a few sentences makes my day lighter; especially after reading you and others' encouragement.

6 a5 ^9 h: F2 v: c# W# a5 oThanks for the number, I am saving it for a raining day. I will only phone you when it's absolutely necessary. Everyone is busy these days, I should not brother you too much. Human's survival ability is quite amazing sometime. I am getting there slowly!
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In terms of Canadian health system, I can't bad-month it too much and it does have tons of advantages. (I can't even imagine what will happen to my family if my daughter was born and living in China right now.) But Blue Cross, they are not quite reasonable in my daughter's case. I was sick and the baby was even worse for the first 30 days at hospital; and I can't expect my husband to get everything straight out plus taking good care both mum and new born. Somehow, we missed the 30 days deadline for adding a new-born to our current health coverage without any medical exam. Policy is policy, you miss the bus, your sick kid got kicked out of the train. It sucks big time; my husband and I have complained so many times; the answer is certain. Blue cross feels sorry for us but rule is rule and my daughter is not covered! Period! A lawsuit with blue cross - will be a big waste of time, energy and money.  

Here we go again! Life! As troublesome as my life the way it is; it still brings the best side of my charaters once a while - wishful and trusting which I lost in a very competitive world at those younger years. Of course, being rude to emergency nurses when necessary does get you what you needed. Stongly recommand my very soft-spoken friends do practise this tip at emergency when you are dealing a real emergency.
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Until this day, my father hates me for bringing a sick baby to this world and he told me repeatively that my career ended the day my daughter was born. Somehow, I wish one day he realizes that my daughter made me a much better person which I could never be without. (Don't get me wrong, I love my dad to death; he is the one who dedicated his life and career to support my every dream. I guess nobody wants to see dreams crashed and it's hard for him to accept any imperfection.)
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Talking way too much this time! Maybe after seeing so many sick babies and young children here; I am getting moody.
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9 Z# I; M9 W6 U, B0 n  |Thanks again! Later!
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, C9 T9 V9 ?1 `+ @% ]8 q+ h[ 本帖最后由 julia.ganesh 于 2009-4-30 05:07 编辑 ]

西子妈妈

原帖由 julia.ganesh 于 2009-4-30 04:56 发表
+ d! A4 h, ~# Y' E3 ?" JAgain, I can't thank you enough. Everything is under control now. I even found a way to get access to internet and continue working at stollery hospital. A big bonus!

People in my situation do pra ...

真正当了母亲的人,才深刻体会到父母对自己的爱和自己对孩子那种特别的情感
) @6 k) ~$ E9 a+ A5 X2 d+ L4 ?你是个坚强的妈妈, 你女儿有你这样的妈妈,很幸福也很幸运, 加油

善行无辙

很久了，看帖子没有被触动得这么深。对不起，我不了解你女儿的病究竟是怎样的。我想说的是，所有的妈妈都会为你感动和骄傲。我钦佩你的勇敢和坚强。不要介意你老爸说的话。像你说的，我也相信他只是爱你，就像你爱你的女儿。
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7 \+ ]$ i( g# A; V5 l又如你所说，是你的女儿让你现在变得这么好这么坚强，以一颗无私的母亲的心。没有你们一家人一起经历的这些痛苦的磨练，也许你从来都不会有机会认识到这一点。所以，谁说所有的这些没有回报，没有希望？ 什么是希望？你们一家人现在所作的一切，不就是在向希望奔走吗？Life is no guarantee itself, right? 纵使是健康出生的孩子，谁都希望但谁能保证做父母的没有心碎的一刻？当在你们的精心呵护下，你能看见她点点滴滴的成长，能抚摸她，能亲吻她，能感受她的呼吸，十月怀胎之后终于能有这样亲密的接触，纵使你身心疲惫，纵使可能听不到她叫你们爸爸妈妈，看不到她将来跟你分享她的成长，这样的经验难道不会让你微笑，哪怕只有一刻，哪怕伴着泪水？我相信它一定会成为你最珍贵的记忆。

我们国内原来有一位邻居，再普通不过的家庭。儿子6岁的时候误吞了笔帽，因为抢救延误成了植物人。就这样有如身陷地狱的父母，坚强得挺过最黑暗的一年又一年，儿子甚至都没有生过一次褥疮。7年过后，儿子终于醒了过来；又过了2年，终于叫了妈妈！虽然听说现在他还是像个小孩子，但是我们从妈妈脸上看到的，永远是微笑和希望。

心累的时候，来这里说说吧，把你的痛苦和压力放在这里，然后坚强上路。想让你知道，这里这么多姐妹都乐于倾听，乐于分担。有一天如果你需要很现实的帮助，我们会在这里。

' L2 K$ u. b! W/ H( C; y; |2 d你和你先生珍重！替我亲亲你的宝贝！

今夜无眠

当了父母， 更能理解父母对子女的感情。 我每天下班， 都会先检查你的消息， 关注中。。。

julia.ganesh

Thanks for all your support and encouragement! My daughter is back home now; her seizures is also under control by medication. The side effect is kinda of worrisome; she sleeps most of the time; I simply wish she could tolerate the medication soon.

/ Y, \: Z+ l8 r- A7 f  p7 {" p, kMother's Day is around the corner; I phoned my mum earlier this evening. Here is our conversation.
: G3 O. y4 m% e- w& m1 p+ \"Is the baby ok?"
"Yes, she is getting better!"
3 e6 b1 A% k* o( P"How are you?"
"I am good."
. `9 o" k; Y- r2 f( x8 H+ s) ^* ["What are you doing?"
"Cleaning the house and doing the laundry......"
, h! y4 [8 \9 X: v/ S( B- @3 r$ V4 I"A full-time housewife now..."
! C  g) n* L' @6 p) f, a- a# u"What do you mean by housewife?"
"What a waste! All the education, all the hard-working..."
"Mum, did I ever ask for any kind of help from you and dad since my life took down-turn? Did I ever use a penny from you and dad?  Tell me, what do you want from me?"
"I just want you to be happy!"
6 l/ v, @* w% S+ ^9 r0 d  H"You want me to be happy in your way or my way?"
".......You never listen!......"
"I'll call you another time, you take care! Bye!"
"Kiss the baby for me!"
"Sure! Take care! Bye!"

4 O- m0 {% V- r5 A; f) k+ \9 MHere is the thing about Chinese parents! You love them and you hate them; but you can never live without them! My cousin used to joke about this painful love relation with parents, and concluded - just let parents know "First of all, You are a human-being; Secondly, You are a woman. As strong as you are, don't assume you have a pair of iron shoulder; you will crash if they keep adding pressure."

今夜无眠

一直在关注你的一切！ 很高兴宝宝已经回家了。理解今年的母亲节对你来说不会是一个轻松， 愉快的母亲节。 但没有人会否认你是最好的母亲。
1 ]( a) I$ X# L& v: }这么久以来， 我知道你是个非常坚强而细腻的女人。你想用你的肩膀去扛起一切。 JULIA， 不要拒绝关心你的人。 让关心你的人走进你的生活。 在我20几岁的时候， 我同父母也很难沟通。 我的生活方式和生活目标都与他们背道而驰。可同你一样， 我知道他们是最爱我们的人， 就像你爱你的女儿。 阳光这么好， 哪天我们一起出来散散步吧。 我对这不熟， 你来做我的向导好吗？

西子妈妈

一直在关注你的一切！ 很高兴宝宝已经回家了。理解今年的母亲节对你来说不会是一个轻松， 愉快的母亲节。 但没有人会否认你是最好的母亲。
这么久以来， 我知道你是个非常坚强而细腻的女人。你想用你的肩膀去扛起一 ...
# ?5 }* C4 V* W( n  c0 M  p3 ^) M+ k7 I- i& R今夜无眠 发表于 2009-5-7 11:55

8 i( Y' X# ]" P. c) }Julia，我也一直想说，如果你有时间，宝宝情况也好的时候，我们可以出去走走，不知道你住哪边