Too ill to have children

[Strawberry]

@Elleh After reading your heartbreaking story, I had a thought of something you possibly COULD do to have a meaningful relationship with a child and partially fill that void. There are many different ways, but I will try to say some to give you an idea.

I have a child in Africa that I sponsor. The cost is 35 a month USD for the foundation I use, and I am able to send and receive letters and pictures to/from my child. My original child just graduated, and I am no longer able to write to her. I had developed such a fondness to her that it breaks my heart not being able to communicate with her. There was a real bond there. So that is one option. And if the $ is difficult, maybe someone could sponsor in your name? Heck, I would donate on your behalf if it brings joy! I have 2 sponsored children that I am unable to write to any longer.

Another (maybe better) option, would be more local. Maybe you could write a letter and mail to local schools or fostering places. Maybe even a children's hospital. Let them know you are too ill to have children, but would love to help out with children in need in simple ways. If you can handle scissors, you could create valentine type hearts, winter snowflakes, spring flowers, etc. Write simple notes: "you are loved!" "Have a great day!" etc. Offer to be a penpal to a child in the hospital or foster care.

I am so sorry to hear you are unable to even watch movies with children without being sad, I am hoping that possibly this could give you some ideas of things you can do to fill that void.

 

[Belbyr]

Nice, Strawberry. My parents do this as well, it's cool to see the kids grow up in their photos and read their letters.

 

[wonderoushope]

That's an awsome idea @Strawberry . I'm going to look into doing this too.

 

[jesse's mom]

@Strawberry That is wonderful!

 

[pibee]

Don't rule out adoption, I have 6 adopted cousins and they are viewed just as biological family. Here is a pic of some of them. And like one leading CFS researcher said, she thinks there is a great Rituximab therapy for about 30 something % of CFS patients that fit that subgroup and she believes she has the answer for some of the other subgroups. Maybe in a couple years we will have those answers after these phase I and II trials...

Nice post, made me happy i opened this depressing thread.

As for the Rituximab, oh, the irony is that one cant get pregnant while on it!

I am 32 and very concerned if i'll be able to have kids, I am far from conventional type of person or female, so it was surprising for me that recently I got so big urge for it. All my older nieces and sister still have no kids, but they're healthy and it's mostly their choice.

 

[Mel9]

So very, very sorry - This is such a sad issue for all those dreadfully unlucky patients who became so ill so early in their lives.

Hang in there: we are all praying that there will be a cure for this dreadful illness before too long.

 

[jesse's mom]

I was 38 when I had my youngest daughter! She is a delight, but I often feel bad for her. She does not remember me well not healthy.

 

[sparklehoof]

I became ill in my early 20s and now I'm heading toward 40 with my health getting worse and worse all the time. I think I am now too unwell to cope with a relationship or even making a child! But I would have really loved to have a kid.

It's another massive layer that adds to me feeling my life has no purpose or meaning. It's on my mind a lot (that's why I'm writing this in the early hours) but I've never really spoken about it to anyone. I try to avoid children and people with children, videos/movies/stories about parents and their children because it makes me so sad to be missing out on such a huge life event against my will.

Of all the things this illness has taken and all the potential stuff that I've lost before I even could have it, this is the hardest.

I can completely relate.

 

[Insomniac]

Elleh, you have written exactly what I feel. I am 42.

I was even worse in my 20's then now and could not even date or care for myself, let alone a kid.

The main reason I don't try to become a single mother is that I don't want to have a baby in order to neglect it. No idea how I would change and feed a baby and deal with it crying on on a bad day. I am housebound 3-4 days every week.

I would be satisfied with a few healthy years before I die though. Be able to walk in the countryside and have someone to love and love me back.

I also comfort myself by remembering that it is not perfect for everyone who has kids. There are healthy people who have kids with very severe mental and/or physical disabilities.

 

[Shoshana]

@Elleh , the original poster of this thread,
and @sparklehoof ,
my heart goes out to both of you.
And to others who became too ill, too young, to be free to make more decisions on options they would have had.
It is so sad and difficult a life loss, when understandably like many people, having a child is something you wanted to do, and still might want, if you weren't so ill with this terrible ongoing illness. As @Mel9 said in her reply post, above, too.

And @redrachel76 , I do think of you often. And send my caring to you, at times you don't realize it.

 

[perrier]

If you contract this ME young, say in your twenties, the illness is actually a bomb: it blows up everything: career, finding a spouse, having a family, money, travel, and even the basics like food and sleep are a challenge. It is one of the most destructive illnesses on the planet, and yet, look how little money overall it gets.

 

[prioris]

People who do have children but get taken down by the disease may be unable to care for their children economically or otherwise. So just be glad you don't have that huge psychological burden to carry. Being older and being hit severely, looking back I am very glad I never had children.

With the earth grand solar minimum and earth magnetic reversal rolling in and maybe other things, i don't think it is a good time to have children anywhere on earth.

 

[gbells]

If you contract this ME young, say in your twenties, the illness is actually a bomb: it blows up everything: career, finding a spouse, having a family, money, travel, and even the basics like food and sleep are a challenge. It is one of the most destructive illnesses on the planet, and yet, look how little money overall it gets.

Funding is heavily influenced by billionaires looking for a fountain of youth.

NIH Budget 2019
Aging $3,480 million
Chronic Fatigue Syndrome $14 million (down from $16 million in 2018)

Health Insurance will NEVER pay for an anti-aging drug treatment so why is the gov pouring money into it? Billionaires.

 

[taniaaust1]

@Elleh After reading your heartbreaking story, I had a thought of something you possibly COULD do to have a meaningful relationship with a child and partially fill that void. There are many different ways, but I will try to say some to give you an idea.

I have a child in Africa that I sponsor. The cost is 35 a month USD for the foundation I use

Though I have two grown up children, I have had sponsored children too and one certainly does get a connection with them, I fostered two right up till they were adults. Depending on what organisation one goes throu, one can find ones at a third of the normal cost to sponsor then something more expensive like world vision.

At one point I was fostering .. a little tibetian monk boy in a monastery and that was only
$10 per week instead for his food and medical care.. compared with the $30 a month for other places sponsoring. Contacting a tibetian place may be able to connect someone to that.

I honestly end up feeling like my sponsored children are my own children.

 

[taniaaust1]

Elleh. I understand I think how you feel even though I did have two children before I got ME/CFS, the thing was I had all my life wanted a big family and then being left not able to care for my own children due to this illness was shocking and heartbreaking to me.

We did not get family holidays and my 9-10 year old had to become a child carer to me. So though I had the children, the situation was still heartbreaking to me. I never got the "happy family" kind of situation due to this whole illness

 

[taniaaust1]

It's not fair to children, and I can tell you from experience...they don't really give a fuck about that. What children do care about is....well,...whether or not their parents care about them.

this is not true in all cases. I too had children I was trying to raise, sadly as a single parent while I had ME/CFS.

This had a huge negative impact on my children and for one, has left her majorly affected as an adult. She has turned into a depressed and bitter adult who will not ever talk to her mother. She blames me for having her (she was born disabled) and blames me for her whole upbringing and her depression.

My eldest daughter at the age of only 9-10 years old, had to become a child carer to me (as I could not get the help elsewhere and I ended up completely bedbound) and also she had to care for her younger sister who was 2.5 years younger than her (6.5 to 7.5 years old)

I was so ill that the kids making noise could cause me seizures so they had to be near silent most of the time, I was left unable to communicate with them well (I was using basic sign language) and worst still I became unable to even hug my own children as touch of things on my skin severely hurt me.

This not being able to even chat with my youngest daughter, hold her etc .. she lost her bond with me and became a very angry child who had huge problems. She never recovered from this and we never regained a normal mother/child bond. Her anger went to hate and to this day even as an adult she hates me. (she has told me she wishes I was never her mother). She does not even see me for Xmas and I are not getting to see my grandchildren grow up, the whole thing really emotionally hurts.

My eldest daughter who had to became my carer at a young age while I was bedridden, though her and I still do have a good relationship. I think due to the fact she lost a couple of years of her childhood having to care for me (and raise her sister), she's moved far away from me as an adult .. I suppose on a subconscious level, to get away from all the sickness and to forget about those years when she basically did not have a mother but was forced to be like a mother.

Anyway, my youngest child did care and has been severely impacted by this and still at the age of 24? still is bitter and angry due to how I was sick when she needed me as a child. People who have ME/CFS can crash so badly that they are unable to even show the children that they truly care. Maybe a child who has had a severely disabled parent all their lives may cope better with it but a child who's parent suddenly crashes and can no longer look after them, can take this all wrong and end up feeling unloved and get bitter.

...........

Another thing my daughter blames me for is that she was born disabled (she has similar to spina bifida).. she's never accepted her own disability. Her disability is due to my MTHFR gene mutation (hence normal folate supplements during pregnancy were not good enough for me, back then this mutation was not even known about but my daughters blame and anger on me with her disability lies in the fact I did not abort her which in her views I should of done).

Some well known ME/CFS specialists have found that we actually have a higher rate of having a child with a severe defect then in the normal population so this is something that even the ones with ME/CFS not as bad should also consider before having children.

BOTH of my daughters had major medical issues due to things I had wrong with me but did not know about at the time. Cause of a virus got from me (which I was like a carrier of).. my eldest daughter (the one who was not born disabled) ended up having to have surgery 16-17 TIMES due to she caught it from me and it caused complications in her for years. She was lucky to have come through all that surgery without becoming permanently disabled herself (she's obviously got something not quite right with her own immune system)

............

There is also the additional issue of each child we have has a 25% chance of developing ME/CFS too according to the statistics.. thankfully so far my daughters have not developed this but my family has ME/CFS running through it with 3 other family members affected

 

[prioris]

people dream about having wonderful families but those dreams can turn into nightmares. society likes to celebrate bringing new children into this world but the birth of children is a double edged sword. parents don't necessarily have control who their children will become. they may give birth to children who are destined to hate them or do terrible things and there is nothing that will change that.

why is this. children were once adults in another past life. their personalities are partly shaped by who they were in their past lives.you throw in all the potential health problems that can beset a child or parent and that's another layer of problems to complicate the situation, i think about 20% of the population are psychologically unfit to have children. many people have children because of social pressure around them. not to love and care for them.

 

[prioris]

this is not true in all cases. I too had children I was trying to raise, sadly as a single parent while I had ME/CFS.


Anyway, my youngest child did care and has been severely impacted by this and still at the age of 24? still is bitter and angry due to how I was sick when she needed me as a child.

i would say the child is selfish, lacks empathy and detached from reality. i have seen that in many children over the years. children will complain about their parents who are struggling always working. a parents first duty is to provide food and shelter. my parent worked 7 days a week. i understood the economic reality at the very youngest age. there was no need to explain. complaining about their parent being sick is sinking even lower. i don't have sympathy for such children. they will bring those same attitudes into their adult life.

 

[Strawberry]

I honestly end up feeling like my sponsored children are my own children.

I know! I've enjoyed it for 12 years. So rewarding.