partner isnt coming to terms that his daughter has SB

[kellymumof4]

Hi,
I,m kelly mum to 4 girls.Two of which were born with SBO and SB level 3/4 hydro clubfoot bladder and bowel incontinence and chiari II.
Grace who has SBO walks ok and has no problems apart from easily tired and achy legs.
Ruby has many problems and will need a wheelchair to get around.
My partner seems to be struggling.He seems to only hear what he wants to hear. Hes always saying she will walk.It seems to be a big issue for him.
On wednesday we were told that ruby will need to start being catherised and for some reason he thought this would just be for a year until the specialist said she will always have problems with her bowel and bladder.
Then the specialist said that many people choose to use a wheelchair as its easier than using crutches or a frame as they like there hands to be free.
He doesn,t seem to get his head around the fact that she may be a full time wheelchair user but i,ve pointed out to him that as she gets older she will make that decision she will know if it hurts too much to walk.
I will leave that decision to her and the team of medics its what is best for her at the end of the day.
I dont know if it is because we dont live together that he doesn,t realise the full extent of her problems or that he just doesn,t want to know about them.
He loves her to bits but doesn,t give me too much help with the 4 girls and didnt show much interest when the nurse showed us how how to use the catheters.In fact he said it would be me that would do that as it was such an intimate part of her body but i said he would have to do it sometimes if i,m not around.
I dont want to split up with him for our 4 daughters sake but i wish he would realise that even if ruby is not a walker it doesnt matter!!
She is our daughter and she will be loved and she is such a happy and content little girl.
has anyone else had this experience with there partners? some advice would be appreciated!!

[angel]

I haven't had this experience with a partner but my dad is a lot like this. I spent my whole life trying to prove to him that just cause I use crutches means nothing. I take care of myself, my husband, our boys, my home, etc...
I think I mentioned on list before that this past thanksgiving he griped at me because I took MY child to MS for thanksgiving to visit my family. We went on a plane by ourselves and apparantly he wasn't happy about it. I think he was more worried but that is needless. He didn't understand how I got our luggage checked in and how we got around the airport with our carry on's. He just went on about why my husband would let us go alone. When I told my husband about the ass chewing I recieved he laughed because if you know me and see me for who I am it makes no since to think that I can't handle it all on my own.
Lets put aside the fact that I live a thousand miles away from every single member of my family, that I raised my son alone from birth to the age of 8 years old, that I have always been able to hold a job, and my son and I lived alone (not with my mom or anyone else) before I got married.
Then after that subject dropped it went on to the issue that my husband travels for business and we are here alone and who takes care of me. I was just floored, I don't know what else can be done to prove to him that I am not sick, and that I am perfectly capable of taking care of myself or anyone else i need to.
I finally realized that I am just gonna go about my life. If he worries I can't do anything about it. If he can't see how capable I truly am then there is nothing I can do about it. I will just go about my life as I always have. I would like it if he would stop struggling with a false image of me. However if he chooses to struggle with it I obviously can't stop it.

Angel

[Gymp]

Hmmmmm...My dad was from the really old school of thought,if you have a crippled kid keep it in the closet.My Dad never once went to any of the doctor appointments,
never ever signed the release papers for my many surgeries.At home any care I needed was done by me Mom,Dad didn't pay attention to any of it.We never did any of the father/son things like horsing around,going fishing and stuff,perhaps he thought I was gonna break.He never gave me credit for things I did well,although I found out after he died that he used to brag to his friends about how good of an artist I was but that was done behind my back and I never knew.The only thing he did for me was yell at me and beat me when things weren't going his way.I always tried to please my Dad but never did find out how to do it,who knows,maybe I did and he was too stubborn to let me know.The two things that I did learn from my Dad was,was how to be a good scrapper and how to be independent.With all his faults I still love and miss him.

Gymp

[flgirl73]

I understand what you're going through. Our son has SB and my husband still denies it. He is almost 7 yrs old now. I guess for my husband it's easier to deny it because our son isn't in a wheelchair and is really active.
When we had our most recent clinic appointment (3 wks ago) - the doctor was explaining some new findings on his MRI tests and my husband decided to play on his ipod throughout our discussion. When the doctor walked out and I began to cry, my husband looked up and said "what's wrong". I was furious. I then explained to him that our son would most likely have to have another un-tethering surgery (major surgery might I add) due to some fatty tissue regrowing. My husband responded with "the doctor never said that". He always chooses to play some electronic device when it comes time to talk about our son or visit with a doctor. He might as well not even go.
When I mention anything to anyone about him having spina bifida, my husband interrupts and says something to the effect of "it's very minor, nothing to really talk about". It gets annoying.
Even this morning, when my son woke up crying b/c his legs were aching and hurting him my husband said to him "you're okay, just get up and don't run any today". I gave him some tylenol and he seems better now.
Just take care of your baby and don't let the other's stress you. That's part of my being in this forum, so I can better educate myself about SB and help my son. Even if the learning part is all on me. I just think sometimes it's easier for people to deny a birth defect than to talk about it. I know my husband feels it's scary and at times gets emotional with me behind closed doors...but yet he still does what he does.
Hopefully this will help some. Good luck.

[Dodger67]

Seems like I'm lucky. I've never experienced denial or rejection from anyone in my family.

[kellymumof4]

well thanks for the replys my partner spoke about it today and said that going to the hospital wednesday opened his eyes a lot more and that he thinks i am doing a wonderful job not just with ruby but all our kids and that hes glad that the docs were straight and told him how it is.
So hopefully we will just continue to stay strong we,ve been through so much.
Flgirl73 my partner has also said things like the "the doctors never said that" when i am relaying what went on at the hospital to family and friends he will often butt into the conversation and say that. My partner also worrys behind closed doors he just says that he stays strong because he doesnt want me to breakdown i guess some men just keep there emotions well hidden.

[bcain]

He waits too long to change a diaper, hoping I'll stop what I'm doing to go do it myself. But he does change diapers and can cath too! Just not very often.
He doesn't try to learn more about SB either. She'd need to be an HVAC system or woodstove, or boat to get that kind of interest to learn more. I won't complain too much, he cleans up the kitchen well, while I ready the kids for bed.

[XoBLoNDiE85]

My husband (Geoff) is VERY helpful with pretty everything except changing diapers,only because cathing is involved. But i don't mind it really....only sometime (very rare) He can if he HAS to but never has to cause Im always with Hannah!

[tanya]

when we first knew about addison having sb things went well my husband listen to everyone and what they had to say. as the years went along he became absent at the appointments due to work and when would come home from the doctor he would question everything that was said for the day of fun and gruling appointments. finally one month when it was time for the six month check up with all to specialists, xrays, ct,therapy, and blood work he took our son while I sat in the corner of the clinic room. By the time we were in the car for the one and half hour ride home he was apoligizing for acting like a dork and thanked me for the work and card I have done with both of kids.

[cadon's mum]

My husband michael has been fantastic, we have taken every step together, he is there for every appointment, he has learnt to catheterise must admit he's not keen on nappies or night feeds, but he has been my absolute rock and has stopped me from falling apart on numerous occasions. He is the one that says take each day as it comes and if and when things happen we'll deal with it then. really don'tknow how i'd cope without him.

[Theresa]

My husband is a stay at home dad, so he's had to do it all from the get go. But, doctor's appointments seem to be the tough ones. It's like we are in two different worlds. And I know he has never read a book or brochure on SB. But, we have different strengths and I think he makes up for me in the areas where I falter, and I do the same for him. I wonder how it will be when Flynn gets older though, right now it's not a big deal if we pick her up, etc. We don't have to explain it to everyone. But I imagine it gets harder when they get older.