Ever since I was a little girl I dreamed of having a family. A child. Children. Unconditional love for a little person. Even when I got ill, I was naive because I always held onto the fact that I would just get better, that is what doctors do, right?! I held onto this idea through all the years in hospital.
Now twelve years on, I can only ask myself the ultimate question…would it really be possible? Could I put my body through that when it’s constantly fighting to survive. My head answer is different to my heart by a long way. Is it possible to have a child when chronically unwell and mostly stuck in a bed?
In many ways I’ve conquered the world, I’ve survived when no one else thought it was possible. I’ve set up a charity, I’ve written a book (I swear there will be more information soon on that one). Yet it still will not answer my one big yearning in my heart: for Samuel and I to have a family. Even if it was possible, would be fair to be a mother that couldn’t go and do all the things a mum should be able to do. It would be a whole new level of grief. Would it be fair on that child to receive bullying because their mum is disabled and in bed a lot? It tugs on my heart strings everyday. Maybe it has something to do with the fact that I am listening to a track called ‘Mother’ from Lion Soundtrack? (Amazing film by the way).
Then there is the whole area of giving z child M.E too. I mean it is a long shot but until we know whether it is a genetic condition, I ask myself is this fair? Can we really play God in all these areas? It would be so much easier if it just happened and I wouldn’t have to deal with all the questions but this is the sort of thing females have to battle with when the ticking tocking time clock is doing just that: ticking time away.
You may think this is a silly blog, in my own world I have everything except my health. There’s the point, as one becomes closer to living a normal life, the more there is that is so close yet so far away. I was once told that it is harder to get better than it is to get ill. At first I couldn’t honestly believe it because being so unwell was incredibly hard. However, now i can see the point. As I slowly make progress, there is so much more in reach that I couldn’t have even thought about when I was so so very poorly. A child (?), when I could barely word a sentence? Having no chance, for me, was easier than having some chance… it could just be a personal thing.
In some ways, I feel my body is failing me. In fact, in all ways I feel this. I know that for a lot of people, I’m just pushing my luck. Some people have had children when they were well and have then got ill, some people say “sod it, I’m doing it anyway”, but the guilt is something I find difficult to come to terms with. The guilt that I may not be able to give the one thing that my husband deserves. Yes, there is adoption. Realistically, what adoption agency would allow a child to be adopted into a family where the mother couldn’t really get out of bed for very long?
Questions, questions, questions. They all haunt my dreams. ‘But you don’t know what is around the corner’. Maybe I don’t. However, I do know what is round the corner of ill health. Having had my sister become a young carer at the age 11 and seeing all the mental health problems that caused (and still does cause her), the niggling signs of grief towards what I might have and what I might not have can sometimes, like today, become overwhelming.
It might come naturally, and everything that was a worry will fizzle out. The truth is, I look around me at all the people moaning about their kids, moaning about life. Maybe, it is time to open our eyes to all the other people in the world, who are either fighting acute, life limiting or all you other spoonies out there going through much worse.
After all this, there maybe the possibility that I can’t have children…
it all seems to be a mess of emotions.
What would you do?
What a beautifully worded question.
From someone who went from being perfectly able to care for my boys to being dependant on carers myself and having others take my role as mum it’s been hard.
In one respect your child will grow up knowing no different just that mummy has wheels to get around and also will become a broadminded, well rounded accepting child as it will have great role models as parents.
The affect on you and your body , no-one knows. Having a chronic debilitating condition is hard at the best of times.
You know you, your doctors know you and can Only advise you on what they believe to be best for you.
Personally since becoming wheelchair bound my role as a parent has changed significantly.
How I see myself and how i think other see me is having an horrendous affect on me physically and mentally.
I feel I’ve lost my role and sense of purpose however every one, carers included, tell me that I’m still mum. Just doesn’t feel like it these days.
At the end of the day my love only you can decide what you think your body will cope with. You are an extremely courageous, loving young lady with a huge stubborn streak and you’ll do what you want any way.
Just know that you have our love and support in all you do decide and we love you dearly xxxx
Lovely Jessica!
I think you know that I got preferably when I was moderately ill with ME and going through labour made me severe and housebound. So in one sense I’m not a great advert for having a baby.
But many people with ME who’ve had a kid have not had my same experience – they’ve had dips but not a massive crash in the same way. My doctor suggested that it’s like pregnancy reshuffles the cards of the immune system – sometimes you come out with a better hand. (Sometime soon you don’t!)
Before I decided to take the leap, even with moderate ME, I had the exact same questions – not only the body ones but the guilt ones – ‘I won’t be able to do everything a mother is supposed to do’ and ‘my kid will be bullied’. Actually, now I realise that my kid is pretty darn lucky. He has two parents who adore him, and one who plays imaginative role play with him (me) and reads to him (me) and the other who shows him the outside world and navigates it. I never dreamed I would raise my child needing child carers and nannies in the early years but it worked out really well and I’m content that it’s been positive rather than negative for my boy. I had to leave behind the assumptions of what a mother ‘should do’ and start with this: ‘I will be there for him and I will love him.’ As a baseline this is a pretty good one. As long as there is someone in your child’s life (e.g. Relative or carer) who’s there for sports day, they can take a video for you and you can watch it at home together, for example. There are ways of celebrating a child and making sure they know they are loved.
I’d say in order to go for it
– you and Samuel both need to be content that the significant risk to your health/life is worth it.
– you need to have a money stream in place and a carer for the child, especially in the early years. (I.e. If Samuel needs to work then you need hands-on help from nannies or relatives). Or you need money for nurseries.
– you need to work out what being a mum would look like for you right now – and what it would look like if you had a relapse and were worse.
Re genetic diseases – it can happen, but at least you would be prepared for this one, and have some knowledge of the places to go for best treatment, whereas you might carry all sorts of risks for diseases you don’t know about too! That’s just the way of life. The question is not whether it would be too emotionally hard for the kid but whether you could cope emotionally if they got it. That’s worth exploring.
Re giving birth itself – I agree that adoption could be tricky – Samuel would probably have to stay at home with the kid. Given that some adopted kids have witnessed violence that they may then try to reenact in their family as they learn what appropriate behaviour means, this could also make you vulnerable. Is surrogacy an option?
The other thing to say is I hear you saying ‘I have deprived Samuel of something he longs for’. To that I’d say what our vicar told is when we got married: children are not a given. When you get married, you start a new family, the two of you. You are a family. If you have the opportunity and desire to add to your family with a child, that’s a privilege, but so many couples experience infertility for a number of reasons, and so you’re not alone if you end up in that position. Samuel chose you for you, not as a potential breeder. (I’m guessing!) I know it’s hard, but if you can work through the guilt, do please remember that you are a catch and that you and Samuel are both lucky to have each other, whether or not you have children. 🙂
Hi Jessica, this is such a personal decision, and ultimately, your family alones’ to make. I wanted to tag onto Dawn’s comment, my son is dx with Lyme and Fibro, and his condition presents very similar to ME. At this point he is mostly housebound. I am relatively healthy, but watching your beloved child suffer day in and day out is the most difficult thing I have ever done. I would not take it back for a minute, and as Tanya said, you will definitely need to be able to support a caregiver financially, as your child will need one if not sick, and if sick will need one long term. So i think there are 2 things in the “cost” column that I would especially consider in a cost benefit analysis: could you be OK with a child who was as sick as you- just a thought experiment, obviously no way to know- talk to your partner about what caregiving is like and if you could do it with your child, and caregiving includes dealing with all the emotions around caring for a sick child. Being a mother/caregiver is a completely different experience than being a person living with an illness. And 2) could you afford intensive in home help if you needed it. If answer to both of these is you can manage both, then you have what you need to go ahead. 🙂
Dear Jessica, we had 3 generations of ME in my family. My mum was severe and died last year after 39 years of the illness. I am relatively mild but it had stopped me doing a lot of things I could have done, my son is 25 and moderate. He cannot work not study. Before we started a family we asked our doctor if it could be genetic, at the time it was a resound no…. so we went ahead. Had I known what I was possibly letting a child in for I would not have gone ahead. It kills me watching him suffer and not being able to get his life started, being passed from pillar to post by medical ‘professionals’ Who do not have a clue. I cannot make a decision for you, and everyone is different. I have just given you my story. Take care, touvare an inspiration .
I really appreciate and admire you for sharing your story. Thank you – it means a lot xxx
It’s such a difficult and emotional subject. I have moderate ME and decided I would love to have a child, but I wasn’t sure if it was possible. We didn’t try or not try, but I was lucky enough to become pregnant. My husband was worried about how I’d cope but somehow we’ve muddled through and found our own “normal.” I understand your dilemma though, as if I was more severe I’m not sure what I’d do either. I think it’s such an individual decision and only you will know what feels right for you. It doesn’t matter what anyone else thinks. I remember feeling really upset recently, as someone posted on Twitter about one of my blogs, that I shouldn’t of had a baby because I had ME and the risk of passing it on. It still makes me cry typing it! However, we don’t know yet if it is genetic – and even so, how can you judge what’s right or wrong for someone else? If I thought too much about that side of things I’d never do anything! I do know that my little boy (now 3!) has brought so much love into our lives. Yes, it’s unbelievably tough and by the time he goes to bed I’m totally wiped out, but for us it’s most definitely worth it. I have a very “hands on” husband which is invaluable! I wish you all the very best whatever you decide xx
By the way the way I was blown away by your positivity in Unrest. To see you smiling despite how ill you were really touched me. Thank you xx
Hi J,
I am 26 years old and was diagnosed with moderate ME 1 year ago. Before I got ill I was in a relationship with a fantastic man, and that man has stayed and struggled along with me through all the grief and loss of life and my new limitations. I am mostly housebound, and yet I watch my friends have gorgeous children, that I regularly go to spend time with on good days. My partner works a lot, he is just building his career and in a way now is a terrible time for either of us to contemplate children. But I am broody beyond belief. I adore spending time with the children when I can, and I long to have my own. But I face all the same question as you describe here. I see my friends look tired and describe their lack of sleep and I think “I absolutely could not cope with that”, I hold their babies for mere minutes and my arms ache for days. I know that right now I just can’t. I just can’t. But the future holds my hopes.
Am I capable? Would it be fair? It absolutely destroys me to think that it will never be possible, that I will never have my own family. I can see that it pains my parents too (not that they would ever say it). There isn’t really an answer right now. But I hope for both of us that we come to peace with this in one way or another, or that it becomes a possibility in the future.
Thank you for writing so succinctly what many of us with this illness who got ill before having children must face.