Need prayers

[anchor31]

I''m so sorry this is happening to you.

Maisie, sweetheart, this is not your fault. I understand that you might feel this way since it''s your egg that carried the defective X chromosome, but you didn''t "give" him this. Genetics is pretty complicated, and a lot of it is random. You never wanted him to have this condition, all you ever wanted for him is to be healthy and happy... And it''s certainly not your fault if you carry the defective gene to start with. It''s not your fault. It''s not anyone''s fault.

I will keep you and your son in my prayers and thoughts. I''m sending you tons of hugs too.

 

[ephemery1]

Oh Maisie, you are such a good mommy for caring so much about your little boy, but you have no reason to be feeling guilty about this!! You brought this little guy into the world and are raising him as his own, unique person... as a mom, that's the best thing you can really do... so I think he is lucky to have parents like you. Fragile X can cause autism-like behaviors, but it may instead just cause mild learning disabilities, so it is definitely not a death sentence. I have no doubt you and your DH will give your son the support and care he needs, just like you do for your other kids, and his life will be filled with love. And that is definitely not something to feel guilty about!! Hang in there and keep posting when you need some support yourself.

 

[Stephanie]

Maisie,

This is in no way anyone''s fault and of course there is no way that you could have known. I know that all of this is so intense and that you feel like blaming yourself, but you can''t. When does James go in for his testing? Are they just doing the testing by blood draw? If so, it''s might not be too terrible for him. Please, keep us posted.

 

[princesss]

Oh, hun, this is in no way your fault or anything to feel guilty about. You''re going to love James and take care of him the absolute best you can, right? There is no use feeling guilty about something you can''t control, when you''re doing so well with the things you CAN control: you''re loving him, taking care of him, and making sure he gets the best care possible. You''re being a fantastic mother. He''s a very lucky boy to have a mother that loves him so much.

 

[Skippy123]

Maisie,
Thinking of you. I am sending lots of prayers. Do not beat yourself; you have a family who loves you and friends who think the world of you (us). You have a beautiful family. Keep us posted and we are all here for you. Hugs.

 

[KimberlyH]

Maisie,

This is not your fault, this is nature (at its not-so-finest). Please do not feel responsible. Your son is and will continue to be an amazing human being, in large part because of who you and your husband are. You continue to be in my thoughts and prayers.

~K

 

[lumpkin]

I am sorry. I know the news is very difficult. You did nothing wrong, and this is not your fault. You are a great mom -- don''t ever doubt that.

You and your family will be in my thoughts and praryers.

 

[divergrrl]

Oh sweetie! I am sooooooo sorry you had to get this news....I''ve been reading up on Fragile X since you started your earlier thread & my prayers are with James that his will be slight -- he''s such a beautiful boy! I know he (and you & hubby) will make it through this stronger than you could have ever imagined. He''s doing so well, and with everyone praying for your family, well, that kind of love out there in the universe can''t hurt.

I wish I could make you feel better, but all I can say is that I''m here for you & hope you find peace & strength in each day.

{{{{{{big hug}}}}}}

 

[zoebartlett]

OH Maisie! I''m sorry you and your amily are going through this! We''re all thinking of you!

 

[Gypsy]

Oh honey! I''m so sorry. You are SUCH a good mommy honey. Please don''t beat yourself up over this. This isn''t a death nell. Your son is alive and could be only minimally affected by this. Don''t lose hope honey. And please, take care of yourself.

 

[Kaleigh]

Maisie,
Please don''t beat yourself up!! YOU are a great Mommy and James is lucky to have you. You''ll get through all of this. Right now, it''s hard to wrap your head around, I''m sure. But look at all the great strides James has been making. Hopefully this will be a slight case and his future will be bright. With the love and support that you and your husband give to him, he''s going to do so well. We are all here for you!!! Sending prayers and a big hug your way. Lisa

 

[strmrdr]

prayers outgoing and continuing.

 

[snlee]

Maisie, I''m so sorry to hear this news. You are a wonderful mommy. Please don''t blame yourself. You and your family are in my thoughts.

 

[Lorelei]

Date: 7/6/2007 6:05:49 PM
Author: Kaleigh
Maisie,
Please don''t beat yourself up!! YOU are a great Mommy and James is lucky to have you. You''ll get through all of this. Right now, it''s hard to wrap your head around, I''m sure. But look at all the great strides James has been making. Hopefully this will be a slight case and his future will be bright. With the love and support that you and your husband give to him, he''s going to do so well. We are all here for you!!! Sending prayers and a big hug your way. Lisa

Kaleigh said exactly what I wanted to - hugs to you and James Maisie.

 

[Ellen]

Date: 7/7/2007 5:59:27 AM
Author: Lorelei

Date: 7/6/2007 6:05:49 PM
Author: Kaleigh
Maisie,
Please don''t beat yourself up!! YOU are a great Mommy and James is lucky to have you. You''ll get through all of this. Right now, it''s hard to wrap your head around, I''m sure. But look at all the great strides James has been making. Hopefully this will be a slight case and his future will be bright. With the love and support that you and your husband give to him, he''s going to do so well. We are all here for you!!! Sending prayers and a big hug your way. Lisa

Kaleigh said exactly what I wanted to - hugs to you and James Maisie.

Yes, she said it best Maise.

I know the initial news has to be devastating, but it will pass, and you will go on loving James as you always have, maybe more.

We have some friends who have a daughter with Downs. She is very high functioning, but more importantly, the light of their life. She brings them so much joy, as I''m sure James has, and will to you and your family. Hang in there Maise, life''s just throwing you a huge curve ball.

And we''re always here for you sweetie.

 

[Girlrocks]

Your post brought tears to my eyes...NOT because of your son''s diagnosis, but because you are feeling guilty that you did something wrong. How could bringing a beautiful person into this world be wrong?? Instead of feeling bad about this, think of all of the wonderful, loving, caring, generous "give your own life for your child" things you have done for your son, and feel good about THAT. No one is perfect, everyone has "something" about them, so don''t judge yourself or label your son, he is who he is, he is who he was last week, last month, and he''ll be the same next month, in 3 months, etc. Just because now there is a "name" for this, doesn''t change who he is, who you are, and who you are as a family.

Take care of yourself and your son, you are strong.

 

[Joolskie]

Date: 7/7/2007 10:21:53 AM
Author: Ellen

Date: 7/7/2007 5:59:27 AM

Author: Lorelei

Date: 7/6/2007 6:05:49 PM

Author: Kaleigh

Maisie,

Please don''t beat yourself up!! YOU are a great Mommy and James is lucky to have you. You''ll get through all of this. Right now, it''s hard to wrap your head around, I''m sure. But look at all the great strides James has been making. Hopefully this will be a slight case and his future will be bright. With the love and support that you and your husband give to him, he''s going to do so well. We are all here for you!!! Sending prayers and a big hug your way. Lisa

Kaleigh said exactly what I wanted to - hugs to you and James Maisie.

Yes, she said it best Maise.


I know the initial news has to be devastating, but it will pass, and you will go on loving James as you always have, maybe more.


We have some friends who have a daughter with Downs. She is very high functioning, but more importantly, the light of their life. She brings them so much joy, as I''m sure James has, and will to you and your family. Hang in there Maise, life''s just throwing you a huge curve ball.


And we''re always here for you sweetie.

Oh Maisie... I am so very sorry. It is natural, as a parent, to feel responsible for our children. But this is not something you did. It is nature working in her always mysterious way. James is a wonderful, amazing and beautiful little boy. And he is so lucky to have a mom who loves him more than anything. No matter what happens, he will be your wonderful, amazing and beautiful boy.

A very good friend of mine has a son with Aspergers. He is an amazing kid who makes everything in life seem more interesting. My kids have always accepted him for who he is. He is just a part of the gang. Which is a HUGE reminder that we are all incredibly unique in our own ways with much to offer those around us. James is James. And with your love and support... he will continue to be the gift to the world that he already is.

((((((HUG))))))))

 

[pyramid]

Maisie

Sorry to hear your not so good news. You should not feel guilty that you gave it to him, if you were not his mother, he would not be James but another person altogether. As others have said it is genetics and not something we have a choice over so no guilt. I am positive if someone else was going through this and thinking as you are that you would be the first one to tell them not to feel guilty too. You are probably in shock just now and that is why you are reacting like this.

 

[Beacon]

Oh Maisie I am so sorry to hear this news. I never knew about Fragile X until I read your post. I totally sympathize with you. It is natural to blame yourself, but you cannot. After all, someone in your family gave this to you and then it went to James. It''s not your fault that this was given to you nor is it anyone''s fault. It''s just there. No one knew about these things in the past but now we have the advanced technology to tell people about things that otherwise they would never know.

Meanwhile you just have to take things one day at a time. Overall having this information is better than not knowing and you can use it to help make decisions.

Don''t beat yourself up, try and stay as calm as you can so you can help your family as best as possible. I am awfully sorry about this and hope that your son is only minimally affected.

Hang in there girl - you are a sweet and lovely person and everyone is rooting for you and hoping for the best.

 

[Maisie]

Thank you for all your responses. I feel truly humbled that so many people care so much about me and my family.

I have had 24 hours to think on whats happened. I spent yesterday crying. I ended up with a raging migraine.

After I made the call to the genetics centre I was sitting smoking at the back door. (I know - cigarettes are bad for me) I was so low - I couldn''t even see through my tears. James came to find me. He crawled up on my knee and cuddled me. He even kissed me. I just thought - ''my precious baby - what have I done to you''.

I was sent home from work. I was no use to anyone. My husband is in complete denial. He really believes James is going to be completely normal. I can''t get through to him. He couldn''t even comfort me. I don''t blame him - he has to handle things his way.

For now I am just trying to stay calm and rational. Not easy but I am trying.

I suppose this explains why I am so weird..... My word not anyone elses. I have anxiety issues and panic attacks. I feel shy when with a lot of strangers and apparently I have an early menopause to look forward to. Bring on the hot flushes and mood swings.... I pity my hubby!

Once again - thankyou for your concern. It has helped me immensely.

 

[Pandora II]

Maisie, I''m so sorry about the results.

You absolutely mustn''t feel guilty. There are so many known genetic disorders these days and a whole load still to be discovered no doubt. I remember reading the "Mutation" book after the series on C4 a few years ago and being amazed that so many people are born ''normal'' at all there is so much that can so easily go wrong.

My mother spends a lot of time feeling guilty that my sister and I have bipolar disorder and terrified that we might develop Multiple Sclerosis (she has had it for 22 years). I tell her that there are far worse things I could have - breast cancer or muscular dystrophy for example - and I''m actually very happy to be alive.

FI and I have discussed whether we should have children or not and have decided yes, knowing that there is a 50/50 chance that they will have a blood disorder that FI has and a similar risk that they will be bipolar (FI''s father is too.) I don''t feel that I am wrong to do this - but it is my responsibility to make sure they recieve the best treatment available if it is the case.

I would really recommend joining the UK Fragile X groups where you can meet others in the same position, and find out about sources of help. Often, your worst fears are so much worse than reality.

Thinking about you! Big hug x

 

[lumpkin]

I''ve been thinking about you, Maisy. I had a similar reaction as you when I got Ian''s Asperger''s diagnosis. After I had time to assimilate the information, I kind of felt glad for the diagnosis. It''s worse when you KNOW there''s something going on, but you don''t know what it is. At least with a diagnosis there''s a place to start. You can''t work with something when you don''t know what you are working with.

It also sounds to me like James is doing pretty well, beginning to really socialize and wanting to be with you. He sounds very loving. Perhaps he won''t be as profoundly affected as some kids, and I''m sure your nurturing is helping him so much. I hope that the affects of the condition will be as mild as possible and that there will be many resources available to you.

 

[Miranda]

Maisie, I just wanted to send a hug your way and let you know I was thinking about you!

 

[IrishAngel7982]

Maisie sweetie...I''m so sorry I missed your thread. I can''t imagine your heartache right now. All I can tell you is that just because you are a carrier of Fragile X, it doesn''t necessarily mean that James inherited it. If he did, I promise you it will be ok. He is young, and you and your husband are doing everything right. You are being wonderful, supportive parents to all of your children. I know you''ve heard many stories about how special needs children are wonderful blessings, but if it makes you feel any better one of my students was diagnosed with Fragile X at the age of 6 because her doctor did not test her until a specialist asked her parents if it was ruled out. She is now going into 2nd grade and her progress has been amazing. Since James is so young, you can meet this challenge head on right away. I work in early childhood education and research has shown that early intervention makes a huge difference in children''s lives, so if it''s any consolation to you and your family, if James is affected be grateful that you found out early in his life.

Also, please do not let yourself believe that this is your fault. It is no one''s fault Maisie. You had no idea this was even an issue. You have 4 other beautiful children...and you have not *done* this to James. You haven''t. What you have done is provided a nurturing environment where he is loved and cared for. Please let us know how you''re doing, and all I can say is I am so sorry for your pain but I promise you...this is nothing to fear. *hugs*

 

[diamondfan]

Maisie, I am so sorry and hope you are hanging in there. I wanted to clarify from your post that you said YOU were tested, and it was positive. Did I misread something? Are you saying you carry the gene and therefore James needs to be now tested? I just was a bit unsure. I am also not sure if two parents must carry the gene or just one.

PLEASE do not be tough on yourself. You did not cause this and you can only love him and help him as best as you can. You are a wonderful mom, that comes through your posts. Any pregnancy can be risky and a genetic issue is tough, if you did not think to screen for it how would you know? (and most people are not just randomly tested for all possible genetic issues, unless there is a reason why). You did not do anything to him and he is lovely and wonderful and you will take wonderful care of him. Random things happen, pregnancy is such a precious balance, and you had no reason to think anything would be different this time. Also, Maisie, please know you are not weird. I have panic attacks too, and a lot of what you describe is idiosyncratic at best, and certainly not the sign of something terribly wrong with you. So many of us have fears or have a tough time with strangers, etc. So do not be tough on yourself. Allow yourself to feel, but do not despair, and know, like you said, that hubby is having a struggle too. And if you do determine he has it, there are support groups and ways to really help him. A very dear friend of mine's first son has Fragile X. She has become very involved and raises money and awareness in the states for the Fraxa foundation. Please please know there is a lot of support for you whatever happens.

 

[Harriet]

Maisie,
I''m sorry. Please don''t blame yourself. You have a loving family who will help each other with this.

 

[monarch64]

Maisie, I haven''t kept up with this particular thread of yours but I just read it through and I''m very sorry to hear of the news. However, I''m with everyone else who''s thinking positive thoughts for you and your little boy...you''re such a great mother and you will deal with this just as you''ve dealt with other things--that is, with dignity, grace, and positivity. you are a very strong woman and you have a wonderful husband and family who''ll stand with you and help you and the little one all the while. You take care of yourself, you''ve been through so much! My heart goes out to you, I hope so much that thiings look up for you all soon.

 

[surfgirl]

Maisie, I''m sorry to hear about your son, but you know in your heart it''s not "your fault", right? You didn''t know anything about this. It''s not your fault dear.

 

[katebar]

Dear Maisie I am so sorry that you and your family are having to deal with this news and the potential repurcussions of such a diagnosis. Please please try not to be so hard on yourself. You had no way of knowing nor anyway to prevent this. I urge you to make an appointment asap with the genetics counsellor for her to give you the facts of carriers etc. She is trained to assist and advise and I''m sure you will feel reassured about your role in this after speaking with her.
In relation to James it certainly appears that he is functioning rather well and I''m sure again when you speak with the specialists they will be able to allay some of your fears. There are cetainly degrees of disabllity from Fragile X and it would seem that perhaps James has the milder specturm.
Again I urge to seek counsel from your doctors. Take care of yourself Maisie you are a good and decent person and I know you will able to cope with this. Have faith in yourself and have faith in James.

 

[snowflakeluvr]

dear maisie,
i am a lurker but wanted you to know that my heart goes out to you. i have a friend with a fragile x kindergarten aged son and he has done very well. he was in special pre-school classes(public school) and is in regular k now.
my son was diagnosed with type 1 diabetes on my last birthday in december. he just turned 17, healthy, bright, athletic kid. i still beat myself up for the 37,000 brownies i ate while pregnant and him being a large biirthweight baby(he''s tall and skinny now) but somewhere genetically the D was there and a serious flu bug "switched" his D switch. it was/is a diagnosis that needs immediate action. i didn''t have time in the hospital to cry/mourn/grieve because we had to learn and to act for jake''s well-being. it was HUGE to me and i am just wanting to tell you several months later, that my son is doing well, he''s still the same jacob i have loved and known his whole life. he is MY hero, for enduring about 20 needles into his skinny body a day. please let go of your guilt and know that your darling son will be ok. i have learned more about diabetes than i ever imagined and i am now confident that we(cuz jacob and i are a team in this) can handle it. my husband went to one educational class and has given very little attention to my son''s illness(denial still?) so you have to be the strong one, the mum who makes it all ok for james and YOU WILL.
i know you don''t "know" me as with five children, i am busy and don''t participate here other than reading and enjoying the sparklies, but i recognize that this community here is very welcoming, warm and loving. you''ll receive much support here as well as other online places. when i get scared or upset, i get on my diabetes forum and it always comforts me and lets me know that we are not alone in our struggles with these human frailties.
your family is in my prayers