Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Christine Mary on March 12, 2007, 08:50:39 PM
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hi to all.
it has been,what seems to be forever since ive posted on here. please know that i did not abandon you. i have started working again and been very busy.
Today we were told by lauryns hemo. that she needs to start transfusing. Her tx appt is for april 2nd. please believe me that even though she looks good, I knew something was going to go wrong at the drs appt. i was very anxious, and tense.(this was before the dr even saw her). i was paranoid and very irritable. i just knew something was not right. after the dr assessed her, he came back in and simply stated,"this is the time where we need to start talking about transfusing". My heart fell 50 ft into the ground. i was too in shock at first to cry. (i noticed my husband across the room,was trying his hardest to fight the tears from pouring out.)
Lauryns hgb fell from a 9.1 to a 8.3 in 3 weeks. her spleen is enlarged to 2 cm, and her blood pressure is lower than normal.
her coloring is ok, and her eyes are fairly white. but she is slowly showing signs of hemolysis.i dont know what to do?
i am so selfish. we have had the gift of seven months w/o transfusions, and now i am angry? why am i so shocked? did i really think this day wasnt going to come? am i in denial? is this normal? all the thal parents who read this(and any parent really for that matter),will understand when i say that my heart is broken into a trillion pieces. the love of my life will soon begin her journey of all the things i feared most.
the dr wants us to consult with a pediatric surgeon for the port! i refused.i think of all the thals ive spoken to, who have managed w/o one. why is my baby the exception? is it that simple? not as the parent its not! then he mentioned a picc line. then he said it will really hurt lauryn if we dont "make it easier". easier for who?! the nurses or my child?!!! he said i might not have much of a choice. I felt like shaking him and saying, how bout we take YOUR kid and cut her open and put a foreign object in HER heart?!
please help me! i am so lost, and desperate for strength. i am losing all faith and i need to be strong for lauryn.
i dont know why i am being so negative and short. it is not directed to anyone in particular by any means...can you help me find the courage to accept reality, and help me with the decisions we need to make???
like the title of the post states.... I am dying inside. I dont know where to turn....
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Hi Christine,
I know what you are feeling. This is a difficult time without having anyone pressure you to do something you are uncomfortable with. Our dr. encouraged us to not use a port etc. Our son fussed in the early years while getting his IV, but after the age of 2 he was fine.
I know that this is not what you wanted. To some extent us parents, even when we know that certain things are inevitable, we wish that miraculously things will be different in our children's case. I just want you to know that I know how you feel and I hope that you feel better soon. Your daughter will be fine, I promise. I hope and pray that there will be a cure soon for all of our kids. In the meantime, take care of your little one and yourself. Our miracle will come.
Sharmin :hugfriend :hugfriend :hugfriend
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Christine, I wish I knew what to say to make things easier. My parents are still in denial until this day, and I'm 30 years old. My mother is always crying about my illness and constantly worrying about me, but then she also blocks a lot of stuff. My father is completely in denial. He doesn't talk about it, never sat there with me when I was getting transfused, except for briefly when I was little. He still refuses to believe that I am sick. I don't think my mom was able to block everything like my dad because she was always the one by my side through everything, and still is. :dunno
I don't think it ever really goes away or gets better for a parent. What you have to keep saying to yourself is that there is nothing you can do about Lauryn having Thalassemia and it's not your fault. It's not like you wanted to give it to her. All you need to do now is love her, support her, and give her all the care that she needs. If she gets her transfusions and does what she has to, she will live a long life. Just keep in mind that these transfusions are going to keep her here with you. You had given birth to her for a reason. Lauryn is supposed to be here. I know that it's going to be hard watching her go through all this, but it's going to help her. You guys will be ok. :hugfriend
We are always here if you need to talk, vent, or whatever you need. We know what you are dealing with in some way, shape or form. It's perfectly normal for a parent to be in denial. It's a coping mechanism. :sadyup
Even though the port would lessen the amount of needle sticks, I don't think it's necessary. It has the potential to cause more worries than you already have, and it's not worth dealing with. You have to worry about infections, clots, heart issues from the catheter being very close to it. I just don't think it's worth it. :sadnope That's only opinion, though.
Please stay strong. Lauryn needs her mama here with her, and needs you to be a fighter along with her. :hug
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Hi Christine,
DO not feel sad. I know very well what you are going through right now ... we were at this juncture five months back ... in September, and our baby was only 2 months old at that time.
Over the last 5 months she has had a number of transfusions ..... initially it was once every two weeks and then once every three weeks and now, hopefully she is stabilizing at transfusions once every four weeks. Every time she goes in for the transfusion, it breaks our heart. But we steel ourselves with the thought that it is for her own well being. So, for Lauryn, both you and your husband have to be strong. Take it one day at a time and once you go through the first transfusion, I am sure you will be able to handle the future transfusions as a much stronger person that what you are now.
As regards the requirement of port, my daughter did not have to get one till now. I would like to thank the nurse at Children's Boston for that. He takes extreme care when he is inserting the IV in order to minimize the pain that our daughter may have to endure.
I may have mentioned it one of my earlier posts, make sure that the nurse who is inserting the IV takes all her time to locate Lauryn's vein and does not rush the job. Also, ask her to warm up the area where she is planning to insert the IV. It seems it helps in increasing the blood flow in that area, which in turn makes it easy to access the veins to insert the IV. Also, make sure that Lauryn is well hydrated the morning of the transfusion as that too helps to make the veins easily accessible.
I may not be able to alleviate all your concerns and your apprehensions about the impending transfusion, but I will surely take the time to share my experiences and thoughts with you. Please let me know if you need to know anything else and if I know I will surely try to help.
Love to Lauryn ...
Take care and be strong.
Bostonian
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:( Oh, Christine, sweetie...I know its hard to have a little one who is sick - albeit not thal major - but seeing them stuck with IVs and blood sticks and all that stuff is really heartbreaking. It does get easier, tho...with time. Like many people have said, with age comes patience and acceptance, with some parents...but mostly the patient. It got easier for me with age - all the blood draws, etc. I hope you find solace that because my Mom was with me the entire way, it made it so much easier, as I am sure you will with Lauryn. God bless you and yours...
Courtenay
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because my Mom was with me the entire way, it made it so much easier
This is exactly how it was (and still is) for me, also. :happyyes
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Hi Christine,
Your resilience has shown through over and over, and I know you know inside that it will do the same once again. Right now is a hard time because it's just beginning, but it won't be long before you're giving advice to other parents going through it for the first time. You and your husband have shown so much strength and you'll continue to find that strength.
If a port can be avoided, do so. I'd like to hear other's experiences with pic lines. I had one for about 10 days over 10 years ago and I can still feel the spot in my upper chest/shoulder where it apparently left some scarring. Also, when you have a pic line, you cannot have an IV or have blood taken from that arm where it is inserted. I do think it may be preferable to a port though. It does seem like it would be much less likely to cause infections or clots than a port would.
Christine, you know you'll find the courage. You'll shed some tears but you'll manage and still be the great mom you've been all along. :hugfriend
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Christine, I feel for you during this difficult time. You and Lauryn are troopers, and will get through this first time as best as you can. Children seem to accept things easier than we adults do. We will all be with you in spirit, our positive energy all around to help you. Love to you and Lauryn. Jean
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Hello Christine,
It is natural for any parent to feel the way you do. Even I can't believe that this day was going to come for Lauryn as she was doing so good with stabilizing her Hb.
You have to be strong from now on. It's not easy and the first step is always the most difficult one, but eventually you will manage it and hopefully it will get easier for you to cope with her transfusions sessions of the future.
I pray Lauryn the least discomfort for her transfusion. :pray
Love and :hugfriend to Lauryn
Take care, Peace!
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Hi Christine :hugfriend :hugfriend :hugfriend :hugfriend
My heart goes for you. I know how the word ''dying inside..'' really mean. But i am sure you will be fine and strong again. Remember you were the one who was encouraging everybody and giving a lot of support to everyone. Remmber your own words '' there will be a cure in our childrens' life'' and i am sure this will happen. So lets concentrate on this and i am sure that God will answer our prayers.
I have another point which is far away from what we are talking about, can the doctor confirm that Lauryn is not an intermedia?? All what she is expierencing can also be symptoms of an intemedia as well. i hope that, knowing the fact that you and your husband are carriers, wouldn't make you rush in the steps taken. I know that some doctors don't accept children HB to be less than 8 or may be 9. But there are some who can do it ( like my son ). If i knew like you four years ago , i might have transfused and have him diagnoised as a major while he is an intermedia ( confirmed by DNA test ). I hope youcan get my point. Anyway, i felt that i wanted to tell you this though my point may not be right.
Anyway waiting for old christine who is strong and optimistic
Love
Manal
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Manal has a point unless you know for sure your child has major. It is a hard decision to make, but you won't know the rate of transfusion until you start. It may not be as bad. I know everyone here has prepared you, but it is your baby and watching her get poked is a hard thing to take. My mom felt guilty that we were both born with thal minor and jaundice and had to be incubated. Till this day she feels bad that I am always sick and I am just a thal minor.
Early transfusions are important to keep development normal, but if you're not happy with her advising can you get a second opinion somewhere?
I am thinking of you. Be strong. :)
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hi to all.
it has been,what seems to be forever since ive posted on here. please know that i did not abandon you. i have started working again and been very busy.
Today we were told by lauryns hemo. that she needs to start transfusing. Her tx appt is for april 2nd. please believe me that even though she looks good, I knew something was going to go wrong at the drs appt. i was very anxious, and tense.(this was before the dr even saw her). i was paranoid and very irritable. i just knew something was not right. after the dr assessed her, he came back in and simply stated,"this is the time where we need to start talking about transfusing". My heart fell 50 ft into the ground. i was too in shock at first to cry. (i noticed my husband across the room,was trying his hardest to fight the tears from pouring out.)
Lauryns hgb fell from a 9.1 to a 8.3 in 3 weeks. her spleen is enlarged to 2 cm, and her blood pressure is lower than normal.
her coloring is ok, and her eyes are fairly white. but she is slowly showing signs of hemolysis.i dont know what to do?
i am so selfish. we have had the gift of seven months w/o transfusions, and now i am angry? why am i so shocked? did i really think this day wasnt going to come? am i in denial? is this normal? all the thal parents who read this(and any parent really for that matter),will understand when i say that my heart is broken into a trillion pieces. the love of my life will soon begin her journey of all the things i feared most.
the dr wants us to consult with a pediatric surgeon for the port! i refused.i think of all the thals ive spoken to, who have managed w/o one. why is my baby the exception? is it that simple? not as the parent its not! then he mentioned a picc line. then he said it will really hurt lauryn if we dont "make it easier". easier for who?! the nurses or my child?!!! he said i might not have much of a choice. I felt like shaking him and saying, how bout we take YOUR kid and cut her open and put a foreign object in HER heart?!
please help me! i am so lost, and desperate for strength. i am losing all faith and i need to be strong for lauryn.
i dont know why i am being so negative and short. it is not directed to anyone in particular by any means...can you help me find the courage to accept reality, and help me with the decisions we need to make???
like the title of the post states.... I am dying inside. I dont know where to turn....
Dear Christine,
I understand your worry as a mother. I have one little tot on the way and I am a mom with Thalassemia. Actually oftentimes it is normal to look at things in a negative light especially if we see our loved ones suffer, but always remember that your little one will also draw courage from you. I have seen from your child's picture that she seems to be a brave little girl. Find that strength from her and together you become pillars for each other. Acceptance is a gift that would open all doors of hope. You are lucky that you are in a country that all available options for treatment and management are there. Not all people in your case have the same luck. Just stay grounded and have faith. You have everyone in this forum for support. :hugfriend
God bless! You and Lauryn will also be in my prayers!
Sincerely,
Lei
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hi Christine
we too started the transfusion journey one year ago with our christian. i remember being in hospital for the 6th time that year with my son and the haemotologist came in and said it's time to consider transfusions. i cried and cried. you are so right - even though we knew it was coming it was nice living a nice 'normal' life for a little while. and the anger is part of realising that your child's life is about to change forever.
christine, we were amazed after christian started transfusions. we had a new child-= energetic, not sick, running around trying to keep up with his friends. we thought he was ok before transfusions, he just was weak and got sick more often than most kids we'd tell ourselves but we were wrong . we had a very sick little boy. he needs care and managing now but with the regular transfusions he is having a happy life because he is able to 'keep up'
the needle part never gets easier. my husband and i take turns taking him in because we hate the needle part as much as christian but when that's done we have a very special day together where it is just mum or dad and our little boy. Andy is right even if you put a port i know here in australia they cannot take blood from it for thr cross match, so she will still have to be pricked to get her bloods done.
it's hard and will be until you embark on the journey. facing the unknown is always scary. then one day, unfortunately it becomes a ritual in your family's life.
good luck and we are all thinking of you.
vicky
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Andy is right even if you put a port i know here in australia they cannot take blood from it for thr cross match, so she will still have to be pricked to get her bloods done.
I don't know about any other places, but you can have blood drawn from a mediport in the United States. You just have to remove the first 5 or 10 ml of blood from it first, to make sure there isn't any heparin mixed in with the specimen. Heparin needs to be put into most mediports after it's done being used, so that no clots form in the line. Andy was talking about a PICC line. :)
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Christine,
Tears start pouring down when I read your first post, denial is a fact and dilemma we still face. When my daughter start tranfusing for the first year we refused to accept she had thalassemia, we did not tell a soul about her situation. Things started to settle down after 18 months, but like Danielle said we did not talk about it, here is a shocker, our state of denail is so severe that except between the two of us nobody in my family, freinds or relatives knows about it. How we are keeping it secret like a holy grail. My parents visit us and stay with us they even don't know about it. We keep giving her desferal secretly when they are around.
I know there will be a day when things will come to open, at that point we have decided to refuse to discuss it further. We don't want any emotional stress on my daughter.
Please stay tight and go with the flow, my advice is don't discuss it too much, people are ignorant and they can only add stress unknowingly sympathising with you. But that's my opinion.
Regards
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Dear christine
After reading your post ,i remember my own satuation.my daughter sara was 6 months old when the doctor told me they had to transfuse her.i was so shocked,i fell down from chair i was setting on. when the time came to transfuse her i was scared of looking at blood.all the way with her first blood transfusion i could not stop criying.
after the blood they gave her she got her color back and she had more energy,that when i realised that this is what she needed.she is getting blood now from the last ten months.
i know that its hard for u right now but believe me u will get easier.
About the port,i have the same feeling as u. the doctors told me about hundred times but i said no.
At first it was hard to find her vain for blood as her vains where too small.they had pok her saveral time before they find any vain.she used was scream trough the whole process.she still doese but its much easeir to find her vain now.
i want u to know that i really feel for u. may got make this whole things easier on us.
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our state of denail is so severe that except between the two of us nobody in my family, freinds or relatives knows about it. How we are keeping it secret like a holy grail. My parents visit us and stay with us they even don't know about it. We keep giving her desferal secretly when they are around.
I know there will be a day when things will come to open, at that point we have decided to refuse to discuss it further. We don't want any emotional stress on my daughter.
Hello Canadian Family,
I don't think this is such a good idea. I know it is hard to explain our condition to the "Layman" but treating your child so conservatively will have even more negative emotional stress on her than what you fear. She will think that she cannot live a normal life and has to remain hidden and keep a big dark secret from everyone in the world. She won't share the little joys with everyone else. As a matter of fact we should do the total opposite of this. We should give all Thals. a chance to live a normal life. You should expose your child's condition to everyone else and tell them that it is not a curse or something. We should educate everyone that with proper treatment this is not such a big deal. Tell her grandparents and all her friends/cousins etc that your child can live a perfect life even with Thal. and I'm sure they will love her no less than they already are.
Well, this is totally my opinion that we should not be so scared of other people for things that concerns only us how to handle our children. What I mean to say is that other people should not worry about what we are doing to our children as we know much better what is best for them.
I'm not criticizing you or telling you to what to do; you better know what environment you are facing and will decide the best for your child. This is just what I think and you need not necessarily agree to it.
Take care, Peace!
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I agree with Sajid. I think that concealing her illness will put a lot of stress on her. :(
When I was younger, *I* didn't want anyone to know about my illness, because of a situation that happened to me when I was 6. I was in a popular newspaper, here in New York, and they did a story on me about Cooley's Anemia and insurance issues. There was a HUGE picture of me in it, with my pump on. When I went to school the next day, I was attacked with comments. No one understood what Cooley's Anemia was, so everyone just kept saying that I had "cooties" and many of the kids parents wouldn't even let me hang out with them anymore. So, I vowed not to tell anyone about it after I moved from the city. My family always knew, from the time I was diagnosed, but I didn't want any of my friends to know anymore.
Anyway, when I had to conceal it, it was very hard on me. I couldn't have sleep-overs, and I couldn't sleep over anyone else's house. Consequently, I ended up leaving my pump off a lot, just so that I could feel like a normal person, like everyone else that didn't need to use that darn thing. I had to constantly make up stories as to why I wasn't in school when I got blood and other stuff. It put a lot of stress on me. I eventually ended up telling everyone, and explained in great detail what it is, and why I have it. I realized that the only reason why I had a problem when I was a kid, is because all those ignorant parents didn't take the time to understand what Cooley's Anemia was, and didn't want to sit their kids down and explain it to them either. It all has to do with education. If those parents would have read about Cooley's, and realized that it's a GENETIC disorder, and not something contagious, maybe they wouldn't have made their children ignorant, too.
I know this is a long story, but I learned a lot from it. I learned that my life now is MUCH easier, ever since I started telling everyone about my illness. I started to tell a few close friends at first, but then after high school, I didn't mind who knew about it, as long as they UNDERSTOOD what it was all about. I even lectured about it a bunch of times while I was in college, because I knew more about it then my professors did.
I don't know what I would've done if my family didn't know that I have this illness, because they were always there for me, no matter what. I don't think it would do any good for a child to have his/her illness concealed from their family. It just decreases the amount of support that the child needs from their family to grow into an emotionally healthy individual.
This is entirely my opinion, and I wouldn't judge someone for something that I didn't agree with, so please do not think that I'm putting you down in any way. I just think that it will make things harder. If you are going to conceal the illness from people, I would at least tell your family about it. You'd be amazed at how much more support you'd probably get. :hugfriend
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Obviously this issue is up to all parents to decide for themselves, and as someone who spends a good part of his life educating anyone I can about thalassemia, I do have hopes that we all will try to make an effort to educate others, which can help remove the stigma associated with the ignorance about this disorder. But I also understand that this varies from country to country and from culture to culture, so each individual has to make this judgment as to what they will tell others.
I would like to mention something that illustrates the contrast between hiding it and being open and accepting as something natural. Lisa was brought up to never hide her thal and was very open about it. She liked to tell the story about how when she first started school, she asked the other kids when they took their transfusions! She just assumed it was something all kids did. She didn't feel odd about it and never thought people would act differently towards her because of it. This is something we should all be striving for. I have been very involved with thals from the Maldives and unfortunately they are often confronted with backwards attitudes about it, which only adds to their struggle. People there still don't realize that thals can survive past their youth and say stupid things like what I was told this week. A mom of a pre-teen thal girl was told by the child's tutor that her daughter won't live long. I was stunned! This type of mis-information has no place in today's world and we need to do all we can to battle these wrong perceptions. Yes, thals still have not reached the average life span but they are living much longer and are normal, contributing members of society, and shouldn't be treated any differently because of a medical condition.
I encourage all to educate people at every opportunity. I understand that this isn't possible for everyone, but when it is, please do so as it can only help to improve the lot of others.
Thanks.
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I agree with Andy, and I'd also like to reiterate that I was not forcing my opinion on anyone. I was just saying how hard is was for me when I concealed it, and gave some advice. It's perfectly ok for everyone to have different opinions. :)
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Actually it is often hard for parents to accept that their children are suffering from an illness not every one else is familiar about. Especially something that they consider life threatening like Thalassemia.
I remember 4 years ago when I was discovered with the Thal trait with my blood dropping to 5 gram, while I was at the same time suffering from a blood infection of Acinetobacter and a lung infection of Pneumonia, with all the IVs and tubes that are attached to my body my mom actually asked me: "If you die before or during your blood transfusion, are you ready?" I know that is a very painful question for my mother has to ask me, but she asked anyway. In fact, during that time, we are even having financial troubles which made the doctor's prognosis worse to accept for my family. I am an only daughter and I only have one brother, so we were very dear to my parents. I especially to my mom because we are also best of friends as a mother and daughter
My only weak answer to my mom is: "God is good mama and they say he is handsome so I am not scared, because I will be in a better place." My mom left my room after I said that, and I knew she was crying at the lobby with my dad and uncles.
After 4 years, here I am, I'm with child, and my family has never been more supportive. In fact I was so happy I survived, and I was able to share to my students, my co-faculty, my superiors and even to complete strangers that I meet that I have Thalassemia. I may be different and special, but I am still the same person like every human being created by God.
Sometimes my family would still feel the frustration knowing that I have Thal and my baby might inherit it, but still I know when my baby comes out that it is okay to talk about it and let people know. The response may not always be positive, but acceptance is always the key in coping up.
God bless everyone! :wink
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Hi Christine,
I hope you're doing better emotionally, all of us parents of thal patients understand you completely, and all the ups and downs and different feelings you go thru are all normal, there is no greater pain in the world for a mother than to see your child suffer in pain.
I want to share my experience with you regarding the med-a-port. My son has had three in his 18yrs. The first 2 were taken out due to staph infections, for which he was hospitalized both times to treat the infection. The last one was around 7 yrs ago, he had it for 2 mos. went in for his anual, routine echocardiogram, at which time they found a huge blood clot to his heart that had developed from the port, within hours they performed an emergency open heart surgery. The surgeon informed me that if he hadn't had this routine test done, as big as this clot was it would've killed him within one week. I'm sure many people have done very well with the ports and never have any problems, unfortunately that wasn't the case for us.
I was just 21 when my son began receiving transfusions and when they would poke him 3, 4, 5 times to access his veins I would cry rite along with him, for me that was so hard to go thru. But the way I see it is I rather cry with him during those painful pokes, than spend my life crying over him because of some stupid complication that can take his life. So just something to think about.
I also want to comment on the comment about keeping our thal children a secret, my personal opinion, I think that is so wrong, we need to educate people not make our children feel like they're different than anyone else, life is hard enough dont make our children feel theyre not normal. I raised my son in a town of 6,000 people, everyone knows everyone, I had many frustruations because people didn't understand his illness so many times people thought he had cancer. I know everyone deals with it diferently, and I'm not judging anyone for how they deal with it, but for the parent that doesn't want any family members to know about it, don't you want that emotional support from them. My son was raised very spoiled by my family because of it and I know it's not good to spoil your kids, but you know when a child goes thru as much as ours do, I don't see anything wrong with giving them as much pleasure as possible. And let your family be there for you and your child.
Take care Christine and you will do just fine with your daughter, believe me you are stronger than you think.
Lily