Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Sharmin on October 12, 2008, 05:37:28 PM
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Almost as much as the thalassemia patients themselves, their family members are affected by the disease.
Parents are often consumed with their child's illness. The illness requires a lot of physical, mental and emotional energy from caretakers. As parents are usually thal minors themselves, experiencing mild to moderate symptoms of being carriers, dealing with thalassemia can be very demanding and can take its toll. Worrying about blood tests, their organs that we cannot even see, their futures that we cannot predicts (only influence) it seems to be endless.
A lot of juggling is required in the family with the thal child, other siblings, careers, and family relations. Raising a family, keeping up with a child's treatment and the latest research can put strains on all relationships within and outside of the immediate family. Siblings, as they grow, also feel the stress and the worry of having a thal major/intermediate sibling.
Sometimes families settle into roles where one parent takes on most of the worry and responsibility for the disease - although both parents want what is best for their child - it becomes a routine and a habit for one person to take on everything. As a thal minor, this parent can become quite run down and weighed down by the responsibilities of seeking out information and making the difficult decisions. One parent sometimes has a very hard time delegating responsibility and ends up doing a whole lot by herself/himself.
As thal patients grow and find partners, the spouses and partners are then affected by the thalassemia. I have heard many times that the well being of a thal patient can improve drastically if they find a supportive partner. A partner who encourages chelation, proper nutrition and increases the patient's self esteem can make an enormous difference.
Our priority is our children, but in order to take good care of them and to make the most of the lives we have been given it is important for family members to take care of themselves. I would love to hear how families of thalassemia patients find balance. It would be great help for everyone to learn different ways to manage the disease of their loved ones, while being healthy and happy themselves.
I am very eager to hear from everyone!
Sharmin
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Hi Sharmin
Very valuable observation. You are right in saying that one partner actually takes on everything. Most of the times it is the mother. We all are an example of this manal, mariam, you , zaini, dimple me and many more names which I am mising out.
Also one more thing whch we always miss out is thal minors have a lot of problems themselves. Andy was telling me a case about a thal minor how she suffered. We are all optimising ourselves on low hb as we are all thal minors
. In fact we as minor should make it a point to take take folic acid and also as most of us our low on iron a multi vitamin will not hurt.
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Hi Sharmin,
I'm still new here but I have to say this is something I will be following as I am still learning how to manage. Sometimes I feel so desperate. My son is still very young and doesnt understand what is happening but when my other kids ask questions I wonder what I will tell him and how I will handle it all when he does. How do you get small children to comply with transfusions and chelation? My other kids couldnt even sit still a few minutes. My husband is still in denial even though four seperate doctors have said they are confident he has beta thalassemia as his Hb A is nearly zero in both electrophoresis. Whether its major or intermediate isnt known yet. Still waiting for the gene tests results.
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Hi Zahra,
If Exjade is approved for children over two years of age where you are, it will make chelation much simpler if needed. Do you have the electrophoresis results?
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Dear Zahra,
I know how you are feeling right now. We have all gone through that stage where acceptance is difficult. The only thing you can do right now is to gather as much information as you can and then take it one day at a time. At this time you don't know if your child will present as a thal intermedia or a major but regardless of the diagnosis you will do a great job with him. We are all here to help you through it, so you are not alone :hugfriend.
In the beginning it is always difficult, the first few transfusions can be a nightmare because the child is not aware of what is going on and does not know what to expect. Over time, if you are relaxed and matter of fact about it, your child will surprise you. Since the age of two, my son sits very still to get his IV and cooperates very well with the doctors and nurses. In fact, he does not mind having thalassemia at all - I probably have a harder time with it than he does. My daughter also thinks of it as part of our routine and does not seem to be bothered by her brother's treatment (she is extremely supportive). My son says that this is a part of him and he is proud of being a brave thalassemia major, he does not think of it as an illness or a weakness in himself. Just remember to trust your child and he won't let you down:)
I think that you will do a great job Zahra, don't forget to take care of yourself and to enjoy your children. My son has posted on the site before, he is eager to post again - I will let you know when he does.
Take care, :hugfriend :hugfriend
Sharmin
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Zahra,
see this link for a post from my son - one from a few months ago and one from today:)
Thank god - he's a pretty happy boy so far. Hope it helps you.
http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0
Sharmin
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Hi Zahra,
Can i ask you where are you from,it's very hard to accept every thing,but once you accept it,it becomes easy to fight,and remember,your attitude would set an example for your kid,i know it's very hard for moms to sit still and not cry when there kid is in pain and crying,but believe me if you'll present a brave and calm face in front of him,he'll also learn to be brave and calm.
We are all here for you. :hugfriend
Zaini.
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I want to thank you all for the great support. Sharmins sons post is so encouraging.
Andy I dont know the names of medicines used here for chelation but I do know they are oral now. The hospital my son is going to has 55 other Thalassemic patients. I dont know how many are taking the oral medicine but the doctor explained that the availability of this has been like a revolution in treatment b/c patient compliance is so much more. They also said they have very safe blood b/c its double tested first by the Abu Dhabi blood bank and then the hospital itself and have never had any issues of anyone contracting disease through the blood transfused. My son had two electrophoresis done . The first at 7 weeks by his paed had Hb A 0.3% Hb A2 0.3% HbF 78.1% . The second one had Hb A2 0.9% , Hb F > 40% and no mention of Hb A at 10 weeks. Initially I thought Hb F >40% meant 40% and was happy but the doctor explained that since ther is no Hb A > 40% means probably 98or 99% in this case. I dont know why they dont give exact values in this lab. I think they will repeat when he is 6 months old.
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Hi Zahra,
The hemoglobin readings are odd as normally they should add up to close to 100%. Was there any mention of any other hemoglobin type, such as HbE?
I know the UAE does have very good care for thalassemics. Al Wasl Hopsital in Dubai has an excellent thalassemia center. I imagine Abu Dhabi also has a good center. Exjade has really made a big difference in chelation rates and is making a big difference in the lives of many patients. Any parent who has had to administer desferal can tell you that Exjade will spare both the child and yourself a lot of pain. Now is a good time for you to learn about thalassemia and the treatment. It does help psychologically to be prepared.
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Hi Andy,
I thugght it was odd too that it doesnt add u to 100% . They did screen for Hb H but it was negative. What is the test for Hb E ? Maybe I can get it done next visit. Maybe i will get the bate thalassemia pcr report then also.
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(excuse my typing skills,i am not very good at capitalization or puntcuation)
to all my fellow thal moms,
wow!this is a subject (up until 2 yrs ago) i never, ever thought i could bring myself to discuss it....
most of you who know me,know my story....for those who dont.......please read.
*foot note-my husband and i knew we carrid the trait BEFORE we concieved our daughter*
it is soooo amazing how time really does heal!! (you couldnt convince me of this 2 yrs ago!!! NOTHING ANYONE WOULD SAY WOULD CHANGE MY MIND THAT MY BABY WAS GOING TO DIE OF THALASSEMIA).
I still remember that fateful day.Lauryn was 4 days old,i was pulling upin my driveway at about 5:30 pm, on a Friday night,mind you, getting ready to take her out of the car.(i was showing her off all day long to family and friends,i was so proud and happy and relieved we havent heard from the pediatrician with her newborn screen results).of course i thought she was fine,because if she werent we would've found out about the thalassemia before we left the hospital,right????)
WRong!
My husband ran out of the house with the phone saying"hold on dr. i dont understand,heres my wife."(he looked so confused and nervous
I took the phone from his trembling hand,and was told "hi.mrs. acosta,this is dr.askar....Lauryn has Beta thal major,she needs a hematologist right away.)
i remember falling to my knees on my lawn screaming in disbelief.i ran into my house like a maniac,paralyzed and basically dazed.
i took my baby from my husbands grip and cradled her as if she was dead. i was preparing to say goodbye.
this wasnt supposed to happen,i thought.we had great odds.75% chance of her NOT having thalassemia.I thought someone was playing a sick joke on us.
those next few days i was heavily medicated.i was already post partum and hormonal and needed to sleep.
we took lauryn to the best hemotologist in my city. UNTIL we found out she was his FIRST AND ONLY thal major patient!
Thats when we inquired about phoenix childrens hospital. They care for 11 majors and 5 intermedias.
She had her first tx at 7 months,and is starting chelation this monday. she just turned 2 this august.
if you wanna know how im doing??? i am not 100% ok with thal,BUT i am 100% confident my baby will live a long healthy life.
Ive researched and learned A LOT about thal these past 2 years,and i know NOW what is to be expected. We call her blood "her vitamins" and like anyone who wants to be strong and healthy,they also need vitamins.
she cries less and less each transfusion (but i still bawl like a baby). she is a vibrant,playful,loving,energized,sweet soul.
i have a 9 year old son who cherishes his baby sister, and i am so very inspired by HIS courage and support,when mommys having a bad day.
my husband has a harder time dealing with thal.he is more adamant to discuss it or even ACKNOWLEDGE thal. that is him. that is how he deals with it. i reassure him i am here to help him cope or to share the information i learn regarding thal.
all these emotions and feelings would drive any sane person nuts!!! I would always ask "WHY ME!!!???)...well,why NOT me?
my faith in GOD has been restored everytime i see my Lauryn smile or when she plays with her older brother.
my point to this obnoxiously long post is, time heals.time may heal you but not your spouse RIGHT NOW.TIME HEALS. KNOWLEDGE IS POWER.IT CAN MAKE YOUR LIFE A HELL OF A LOT EASIER!!!
HAVE FAITH IN YOUR GOD,YOURSELF AND YOUR CHILDREN. LIVE LIFE LIKE ITS YOUR LAST AND NEVER THINK THE FIGHT IS OVER... BECAUSE AS WE GET CLOSER TO A CURE,ITS SAFE TO SAY WE'VE ONLY JUST BEGUN THE FIGHT!!!!!!
:hugfriend
Christine
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Christine :hugfriend
Your story is the story of almost all thal moms,i remember our first days were like hell,going from one doctor to another,and really i couldn't believe that my 3 years old child,who was so healthy and so normal for three years,suddenly now have thalassemia? Doctor said you both carry thal trait that's why she has major ,we did our electrophoresis and i kept praying that our tests will come back negative and i'd shove the reports inthe doctor's face and say"huh ,you see my baby can't be a thal major,God just can't do that to me". But sadly and predictably they came back positive,Every doctor at that time seem like an enemy who wanted to expose my little baby to needles and foriegn blood.
I didn't know much about thal at that time and i used to sit by her side all night long and just cry,i felt like GOD forbid she might not wake up,my husband was even more confused,he didn't even know what thalassemia stands for,and why our daughter will need transfusions,i knew that little bit coz i had a cousin with thal major who died at age of 20 when i was a kid.
Any how,i can go on and on and on about this,but to suffice it,i am confident about my daughter now,she'll have her chances in her life and will live a healthier life Inshallah.And a big part of this confidence comes from this forum,so thanks to you all :hugfriend.
Zaini.
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Hi guys
Well. I don't know for sure whether I am thal minor or not but i know that i have blood results a little below the normal level ( for me below normal means below normal and not " not too low it's nothing").
At first it was very difficult to digest that my son's blood results are not so good, it came as a shock since i never encountered any health problem as a child, i never even went to a hospital. But I came to accept this fact.
When i came to know about my son's result, my husband and I did a cbc. His values were on the higher end of the range but mine were on the lower end and even below normal except for the platelets which were slightly above normal (similar to my son's results).
However what I have come to realise is that women come to terms with the facts and accept the condition but men seem not to be able to accept this. My father still maintains that I have nothing and my husband says that his children are healthy and they do not want to discuss it.
JAde
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Jade, you are so right in your observation and i don't know the reason for this. :dunno
Same is happening to me with my husband, at first i thought this could be a case of denial then i became upset that he is not sharing me what we have been through though i know how much he adores his son and ready to sacrifice his life for his, but at the end i came up that may be he belives that our son is in good hands (his mum's hands) and the best possible thing is being done. Still i always tell him that he has to be up todate with me cause who knows and who gurantee's his life, what if something happened to me, who will follow up the case and that really annoys me a lot especially that i am the one taking decesions and sometimes you need to have someone taking responsibility with you. So what i do is sometimes i write little notes on papers saying what trails i am following and what i am expecting from such and such and keep them in a seen place or just give them to him. He usually says that those information are so difficult for him to digest but he agrees to do whatever it takes to offer him something good.
The only good thing about this is that when comes times were i am totally depressed you find your partner calm enough to get you out of this situation , so we have to take the good side of it :biggrin
manal
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Yes, I understand your point but at times when you want to do something, the fact that they do not take it seriously, makes things more difficult to move forward. At times I feel restricted because of their frame of mind.
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Hi Christine, Jade, manal, Sharmin, Zaini, Zahra and Manal
How true. Christine your story is exactly like all of us. reality was hard and exactly the same for all of us.
However I feel mothers come to terms faster than fathers cos women are emotionally stronger. women are genetically stronger in terms of emotions than men , there have been studies and it has been prooved to be correct,.
Jade -it is not that they are not taking it seriously, they are not acknowledging it cos if they do for them to perform in their daily lives becoms difficult. I used to ask my husband "why u never even bother to learn what is happening in new researches". I used to wonder, he is so well read and is on the net reading about business, global economies and financial world, then why is that he cannot read about what is happening in new developments on cures for thalassemia. My husband said that "if I read about these things I cannot function, i cannot sit in office I dont feel good about things". I did not beleive him but after I read your posts I realise everyone is in the same boat like me. In fact it took him more than 6 years to actually start looking at thalassemia in a positive light. S'pore conference did help and now yesterday he joined our forum as well. It is a pleasent surprise. Also dont forget they are so emotionally
dependent on us that they think, it is ok my wife will be doing the best thing for our child and is doing the right thing and she is no all in this subject.
One has to be patient. Also time is the best healer, it will heal them as well.
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Hello to all of you,
as you know m thala major..my age is 26.
My family supports me a lot, they know all the things going through with me..
Sometime i dont feel comfertable to share my feelings..
I Just want to say to all Mother Keep trying to motivate your Child..nd as they grow they will face many changes in life,so try to understand them and keep asking from them if they want to share something.
I know you all are great Mother, I don't need to suggest you anything, but being a thala major
i just trying to manage my life in good way..
I wish our little angel do well in life..
GOD BLESS YOU ALL
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Non thal siblings of thalassemia patients are affected by their siblings disease. I often wonder how it affects their development and self esteem.
The siblings grow up around this disease, they sense their parents worry and sometimes their needs become secondary (despite parents best intentions). A flu or a cold in a non thal child does not mean a drop in hg therefore parents may not have the same reaction when the non thal child is sick, compared with the reaction they have when the thal child is sick or injured. So much time and energy is spent on observing the behavior, possible fatigue, blood tests, supplement and medication schedules, and appearance of the thalassemia child that parents simply can't spend on the non thal child.
These children also spend time around hospitals, medications, doctors, concerns and worries. All of this must also affect them in various ways - they must feel left out. At times they may worry about their siblings and have various fears about the illness. They may feel guilty, as their sibling is poked and prodded, while they themselves aren't.
The may also miss the praise that their siblings receive. Thal patients are often told that they are brave and wise. The siblings are watching wondering if they also are brave, how could they possibly display bravery as their siblings do? Also, when thal patients do well in life despite their thalassemia - again the parents and teachers are dually proud because not only has the thal patient succeeded, but they have done so despite their illness. The nonthal sibling, regardless of how well they do cannot compete with this - afterall they may have done well but there was no 'disease' or 'obstacle' that they had to overcome in order to succeed.
As families, I believe that it is important to incorporate the siblings' understanding of the disease, their growth and development as is pertains to their siblings thalassemia, and their importance regardless of their thalassemia status is very important. These children need more attention than a child who does not have a sibling inflicted with thalassemia because they are watching everyone give a lot of attention to their thal sibling - therefore their perspective on attention and love is different from the average child - who does not witness this.
I am interested to hear everyone else's views on this and ideas about how we can educate siblings of thalassemia patients
Sharmin
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Some of this crosses my mind as my daughter grows up, dealing with her brother's thalassemia. She has generally done well, and we involve her in everything as thalassemia is a family issue that we deal with together. We like to acknowledge that it has an impact on her too. There are times, like when she has an occasional poke or accident - and we tell her she is brave - but she very matter of factly replies - "no, my brother is brave because he doesn't cry when he gets his IV", or when she has a great accomplishment at school she will say "yes, but it is easy for me because I don't have thalassemia, but my brother can do this even though he misses so much school".
I wonder if others have dealt with this as well.
Sharmin
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As usual sharmin, you are touching very deep issues. I really don't have a similar expierence as yours since thalassemia is not yet introduced in my family, none of my children has yet known anything about it since there wasn't significant situations (like transfusion for example) that forced us to talk about it.
But actually your post made me realize how much i sometimes become unfair to my daughter. Though i don't overprotect or spoil Ahamd (which is not the case for his father by the way :-\), but i am very strict in many situations but deep inside me i really don't bother that much when my daughter catches cold or i am not keen in giving her multivitamins as i believe that since she eats balanced diet, no neeed for a daily multivitamin. After your post i can see myself from the outside and i really hate it, I hope that my daughter can not feel the difference and i hope that it is never late to correct my way :( I am dealing with my daughter as if there is a gurantee that she is always fine. My subconscious keeps her away from my attention, now i am so afraid about her
Sorry for changing the idea of your post but thank you fro making me realize how much i should take care that she shouldn''t feel any difference
manal
manal
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Manal my dear,
I am confident that you are being a very caring and supporting mother to both of your children:) Looking at you children's pictures tells me that you have pampered and cared for both of them very well:)
In your case, because you don't have transfusions etc. there is less opportunity for your daughter to feel left out. It may be a good idea when you think the time is right to begin helping you daughter understand your son's condition (in very very small increments) so that she does not ever feel left out or think at some point that you are less concerned about her. I know that you will continue to do a great job with both of your little angels.
Because of my son's transfusions, my daughter has needed to understand thalassemia from the beginning. By making her a part of everything including hospital visits has helped her feel like she has an integral role in all of this. She helps the nurses find a good vein, she brings him a healthy snack from the cafeteria etc. When my son takes his desferal off, sometime he bleeds just a little - my daughter's job is to bring him a tissue to wipe the blood. It is so funny, she can be anywhere in the house but once she hears that her brother's desferal is coming off - she comes running with a tissue. I think that this support and understanding between them will help them both. I make sure that when we are not dealing with thalassemia, that we give a lot of attention to her issues.
This summer however, when my son had the reaction to the IVIG - I had to stay in the hospital with him and she had to stay with grandma. Usually she loves this, but at that time she stayed with grandma for a week feeling like she was not a part of the family. She knew her brother was not eating - and she kept asking grandma "is my brother okay? do you think he ate something now?"
When she visited she would try to be comforting to him, but he had such a terrible headache that he would scream "take her away! make her be quiet" - I could see the tears in her eyes and the pain on her face during this ordeal. All of this has made her compassionate but very sensitive too. After this incident my son was quite grumpy, and I think some of that grumpiness affected her too. The situation shook her confidence, and we are still seeing some clinginess and anxiety in her behavior. Although she is very intelligent and brave, she does not give herself any credit saying that her brother does so much more - even though he has thalassemia.
I am just wondering how some others noticed these things in their children. I also think that it would be a great idea to share ways in which to involve and support our non thal children.
It is easy to understand how thal affects your thal child's life - because they have thalassemia. It is more difficult to understand how thalassemia affects your non thal child - because they don't have it. (My daughter does not even have thal trait - yet thal affects her very deeply).
Sharmin
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Sharmin, May God bless your children and keep them always supporting each other now and forever, it is the best thing that satisfay parents knowing that when they leave this world, their children are supporting each other. This would never have happened by chance ,but a really caring parent like you is behind all this for sure.
I salute you my friend and your sweet daughter, how caring she is. :wub :wub
And thanks Sharmin for your advice that i will definetly folllow, take care
manal
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Thank you Manal, your support and encouragement means so much :)
I am trying my best with her - and for many years things went very well. This has been a year of adjustment for her, as I have told you she has been bullied at school, little A has had a difficult year because of the antibodies and I sometimes feel like I haven't done enough for her. She is a very sensitive little girl.
Perhaps this is why I feel that families of thalassemia patients sometimes have a low threshold at which they can be hurt. We can get through so much with tons of courage, and sometimes someone's harsh words or cold attitude can break our hearts.
Sharmin
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Yes you are right Sharmin,
And it hurts more when people do such things deliberately ,and most of the times moms are the ones who face more hurt and depression.
Zaini.
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Yes you are right Sharmin,
And it hurts more when people do such things deliberately ,and most of the times moms are the ones who face more hurt and depression
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Isn't if strange how we let these people affect us? If only we could be as affected by the compliments and warm thoughts people send our way - as we do for each other on this site - we would be so much happier and more confident! Our heads would be so inflated with pride that we wouldn't be able to get through our front doors!! :rotfl :rotfl
The other day I was teaching my daughter to pretend that she is surrounded by a filter - and only circles with smiley faces can get through it (compliments and friendship) - but squares with grumpy faces (insults and rude remarks) cannot get through. I also told her to make sure that she was only sending out round smilies and no grumpy squares because they hurt other people. She came home from school happy to announce that she was covered with round smiley faces but one grumpy square snuck in - so we quickly removed it :) Now I have to work on my own filter! Too bad in the adult world there are a lot more shapes to hide from - like the grumpy octagons pretending to be round smilies ;D
Sharmin :wink
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You are amazing Sharmin :hugfriend
Zaini.
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Isn't if strange how we let these people affect us? If only we could be as affected by the compliments and warm thoughts people send our way - as we do for each other on this site - we would be so much happier and more confident! Our heads would be so inflated with pride that we wouldn't be able to get through our front doors!! :rotfl :rotfl
Sharmin :wink
I love the way you are teaching your children how to cope. It is another way to look at life. I applaud you. :clap
:rotfl :rotfl We would start carrying pin needles around to stop our heads from inflating :rotfl or should I say my husband would :rotfl
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Cherieann,
Thank you for inflating again - I think I will need that pin now :rotfl
When parents are in the situation that I am in it is amazing what they can think up - we all want what is best for our children and we all find innovating ways to achieve this goal. I am so glad that we are able to share our methods with one another - as parents. It is also very valuable to get the opinions of adult patients because you know what has worked best for you.
Thanks again,
Sharmin
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:rotfl I would probably need it before you :rotfl
You are right though, parents will always find a way to help their children.
My parents did their best by me through treating me no different to my sister but also picking me up and giving me a push when I needed it.
I know it was never easy for my mum having to be in hospital with me and having a sick husband at home and my sister. There were times that my sister and dad needed my mum more.
I learnt empathy not sympathy.