Struggling with stepson & new disability + lazy BM
- New to this site!
- feeling guilty ☹️
- SS is 9 years old
- Relationship: 3 years
- BM is ignoring most of the advice from hospital
- have no children of my own
I am new to this site but so pleased I found it after a weekend of crying my eyes out getting overwhelmed with the changes we're going to need to make!
I've been with my SS father for 3 years and noticed that SS wasn't developing as expected at the start, suggested possible dyspraxia (which was a hard conversation) but turns out after 18 months of hospital visits he has a very rare genetic, generative muscular disease which will ultimately leave him wheelchair bound and shorten his life.
freaking out and feeling guilty/selfish but can't help wonder if this will stop us having children of our own, also always (since I was 13) worked and dreamed of buying a bigger house, now it means we might have to change everything to buy a house that accommodates for SS and I'm just freaking out a bit, feeling really guilty because I'm not gelling with SS
i obviously care about SS but just get so angry because BM and my partner (BF) just seem so laid back about all of the important hospital advise on how to care for things like his development and nutrition moving forward, I know SS isn't getting any decent meals at home with SM because he's telling me, it's so frustrating because I can't call out SM as my partner feels like she would revoke his access to medical appointments - its soul destroying making so much progress with him for a weekend and then he goes back to his SM and it's all undone again, diet/physio/manners etc. i want to curl up and run away
anyone else in a similar boat?
It sounds as if the parents
It sounds as if the parents in complete denial about their son's diagnosis. This is not an uncommon reaction. They're trying (consciously or not) to convince themselves that he's going to be OK. I suppose there will be regular check-up and treatment visits so I would think that your SS's progress is being closely monitored. The lack of following doctor's orders will come to light sooner or later. All you can do is follow the "rules" while he's with you. I don't wish to rub salt into the wound but when the doctors said his life would be shortened, did they mean dramatically, or predictably, or just possibly? (I have a child whose life expectancy is about 20 years less than mine. I've learned to come to terms with that.)
What does the custody order look like? Who makes the legal decisions? Maybe BM cannot legally cut him out of his son's medical appointments? Does your DH get his information directly from the doctors or does he get it from BM? IF from BM, he can go directly to the hospital and demand reports of the appointments, results of tests, any other information relevant to his son's conditions.
Finally, do not despair of having that big beautiful house! It will simply need adjustments made to accommodate your SS's issues and, for the time being, he isn't yet in a wheelchair. There's time to adapt the house, bit by bit, as needed. As for having your own children, please make an appointment today with a genetician to discuss the possibility and the risks of your baby having the same condition. A genetic condition does not necessarily mean that it is hereditary (for instance, Down Syndrome is only hereditary in fewer than 1% of cases). So, speak to a specialist ASAP. Not all of your dreams have to be shattered!
so sorry, it's not letting me reply to your message :(
so sorry, it's not letting me reply to your message
Reply 1
Thank you so much for taking the time to write such a kind and thorough response, I signed up to this site this morning and was a bit anxious but to see your response it felt like such a breath of relief, thank you. Also, sorry I totally mistyped my abbreviations at the end and put SM instead of BM!
You’re totally right that they could be in denial, I know my partner (bf) wants to avoid any form of conflict wherever possible as BM made custody very difficult in the first months of SS life, she was only 17 and very malicious at the time, thankfully she’s very grown up and tolerable these days! In terms of his lifespan, we’re really not sure - the average life expectancy for most people with his condition is under 3 years old, however we know his particular strand of the disease is incredibly rare and there’s potentially <5 patients in Europe who have made it to 20-30 years old, it’s very much an unknown at this stage but what we do know is that this will be degenerative and ultimately he will lose the use of his legs and coordination significantly in the coming years (he already struggles with things like walking, stairs, can’t climb in any form/getting in and out of the bath/shower is a challenge
Some random thoughts
Oh my goodness, that must be incredibly hard. BM's behaviour might not be due to laziness; it's possible that she isn't following the doctors' recommendations because she wants her so to be as comfortable and happy and hassle-free in the time he has left. She perhaps hasn't realized that she can improve his quality of living and maybe lengthen his life by following the guidelines. She may also blame herself for her son's condition and is trying to "make up" to him for that...
Fair points / perspective
I wish it was something wholesome like her wish for him to have the "best time ever" with his time left, but everything he says just makes it sound like she's too busy to pay attention to his existence, she has another son with her new partner and it's almost like he's cuter/smaller/more fun.
For example on social media: she will regularly post photos of her younger son but hardly any acknowledgement of her first born (my Ss)
Reply 2
The custody is in favour of BM, we have him 3 days in every 14 as a minimum but it seems that he spends 50% of the other 11 days with his BM’s mother (grandma). Unfortunately the doctors have been very poor so far with keeping BF in the loop with appointments, decisions and results which we’ve provided feedback on, so we have to thank the relationship we have with BM as she does share that info at the moment
Thank you RE: comments on the genetician, we’re very fortunate that the NHS have asked BF to have thorough testing in the first instance so that will happen first (hopefully in the next couple of months and then after that, we’ll review what steps to take for my fertility checks) for the moment, I’m on birth control and intend to be for another year or two.
I hope this is just a wobble and I’ll find my happiness and spark again, ready to sell my home and create a beautiful new home with both of the boys
Sorry for having to break this message into 3! Tried to post it last night but it kept crashing
How old is your bf's son?
How old is your bf's son?
9
Hey, he's 9 years old
It is always sad when the babies are ill.
That said, even critically ill kids need structure and to be held to comply with standards of behavior and performance.
For this kid to have any chance at his optimal quality of life your BF is going to have to grow some balls and keep his foot up BM's ass any time she fails to adequately care for SS on her time and any time she interferes in BFs parental rights. If he doesn't, this kid is screwed and so are you.
Good luck.
Wish it was that easy!
Thank you, just wish it was that easy to have a very frank and honest conversation with BM but she's defensive and knows she holds the power.
On the flip side of it, whilst we want her to buck her ideas up, we also don't want her to lose custody as we
a) know SS loves his mum and his step brother/step dad - we wouldn't want to pull him away from his 80%of-the-time family
b) honestly don't think we can commit to taking him on 100% of the time; I would end up despising BF if it affected my career and I know it would cause a huge void on our relationship, but I also know that's really selfish of me
Not selfish at all.
Take care of yourself.