# Completely deprioritized



## TheStranger (Jan 14, 2013)

Not sure if this is solvable but it will help me vent. 

It's our two and a half year old son. He has a minor birth defect, his intestines are not properly positioned which are causing severe constipations and regular cramps. After three hospitals and several experts we have a therapy now which helps him poop at a regular basis but cramps are still there and they say that is something we have to learn to live with. Because of that he sleeps less than other kids on average (8-9 hours typically) and wakes up often and cries because most cramps happens while he's sleeping.

Because of all that my wife quit her job and she stays with him all the time. She struggles to get enough sleep almost every day since his birth and in order to keep her sanity she usually sleeps with him during his afternoon naps. That in effect means she is with him 24/7.

The sex only happens during afternoon naps if she decides to skip sleeping. Sometimes she just wants to unwind and cuddle so not event that means sex. Also, she is almost never horny. She kinda just switched herself off faced with this situation.

And it's not just sex. She doesn't have the time for me at all. We didn't go on a single date since he was born. I tried last month to get her to see that Gravity movie since it's short and sweet but she declined. She isn't comfortable leaving him even for a short while.

I know she is tired and scared. So am I. But I feel our relationship is slowly sinking under the weight of all this. She just hopes that things will improve in time.


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## TikiKeen (Oct 14, 2013)

Do you all qualify for professional respite care? If so, insist upon it for her own sanity and for your marriage. Go to MC if you need that help to get the point across to her.

Trust me, if one parent checks out, especially with a special needs kid, the marriage goes downhill quickly.

Other ideas: let her sleep and you handle nighttime kid care; alternate days and schedule it so she knows you're committed to giving her uninterrupted sleep.

Pay for a sitter that you both train on your child's care together. Have the sitter come over (paid) for four hours a day or two before date night. Make sure all care instructions, emergency contact info and schedule are written down in a notebook for the sitter to reference. After that first night, the sitter is set to continue without further training unless medical care changes.

Look into Butterfly Respite Programs at local churches. Worldwide, the Methodist Church is very active in that. I used this when I was an agnostic; they don't care. They just want people to use the service.

Persuade her to go to IC, and you go too. It's essential for all parents of special needs kids as we make the adjustments through grieving the loss of the ideal kids we wanted. That's normal grieving. It also empowers us to move forward and maintain as great parents. Things will not improve if she is stuck in fear. Same goes for you.

My ex checked out when our youngest was born. He was in denial about the severity of the birth defect (and brain damage), and was resentful that he got less time because of my fear of trusting others. (He was also an all-around jerk, but I digress.) He made little effort to help, and I slept 4 hours per night. I didn't have a nurse or respite care back then, other than my family. exH never asked to go on dates, and I wasn't about to.

While my current H slacks on marriage care (other than date night with little conversation or touching), he does step up and care fully care for that son. We have the medicine and daily schedule blocked onto a spreadsheet for him to use if he's unsure. 

Push her; she's in fear. Care for the kid some to ease her fear so she can move into confidently going on dates. Note that none of this is sex-specific; it needs to happen so sex can happen.


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## Anon1111 (May 29, 2013)

Sorry to hear that about your son. That is a tough situation.

I have two special needs kids. I would say that your wife needs to figure out a way to accept help from another caregiver. You should be trying to help more with the caregiving too if you aren't already. You have probably already realized this though.

I tried to solve a similar situation in my family with money. For the past two years we have had a live in nanny. My wife is a SAHM too. I hoped that the nanny would relieve my wife enough so that she would find time to enjoy herself outside of the special needs mom role and that our relationship would benefit as a result. It has not worked out that way. The presence of the nanny has not reduced my wife's intensity one bit regarding our kids. She has used the nanny to increase the amount of therapy she is able to coordinate with the kids-- it has in fact become a leverage mechanism that has allowed her to increase the overall investment in her mother role. There has not been any benefit to our marriage.

So on the one hand I would say that you definitely need help, but on the other I would say that you need to be firm that your marriage has to be a greater priority. The help cannot just be about further servicing the children.


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## Rowan (Apr 3, 2012)

I'm so sorry about your son. Dealing with a child with medical problems can be utterly draining. 

I spent the first 3.5 years of my son's life getting a max of about 5 hours of (interrupted) sleep per night. There's a reason they use lack of sleep as a torture method. It makes it almost impossible to think clearly or maintain your equilibrium either physically or emotionally. And then, you have to deal with a tiny person who screams a lot and can't be comforted reliably. Plus, there's all the medical stuff to deal with. If the parent of an average infant/toddler gets something minor wrong, it's usually no big deal. If the parent of a medically fragile kid gets something minor wrong, it can mean hospitalization, even death. That's a lot for a sleep deprived person to manage. 

After 2.5 years of this, your wife's not just "tired". She's physically, mentally and emotionally exhausted in a way that can be hard to conceptualize if you haven't been there. I would imagine you're exhausted as well. And I believe you may find that you both feel completely deprioritized - by life in general if not by each other.

Can you find a competent nurse, nanny, or respite care provider to give the two of you a few hours of alone time? Realistically, normal babysitters and childcare centers are often out of the question when there are special needs. And not everyone has family who are really capable of properly caring for their special needs child. I did not. Our families kept making those 'minor mistakes' that were potentially deadly, so I needed to hire competent help.

How much of the childcare are you managing when you're home? When you ask her to go on dates with you, do you already have your son's care arrangements made - so that a date with you doesn't actually create _more_ work for her?


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## TheStranger (Jan 14, 2013)

Luckily, my son doesn't need special care. His therapy consists of a powder which is mixed into his juice and that softens his poop.

His cramps are problematic but we can't help him expect comfort him when they happen. It's usually over after a few minutes. Because of that he was from day one a horrible sleeper.

Another interesting thing is that he goes to sleep really late from birth. Almost always after midnight. Any attempt to correct this worsened his condition so doctors advised us to let it be for the time being. 



> Other ideas: let her sleep and you handle nighttime kid care; alternate days and schedule it so she knows you're committed to giving her uninterrupted sleep.


I'm still trying. The thing is, he doesn't want me there, he wants his mom and I can't sleep consistently with him because I can't manage to sleep more that 4 hours usually. Besides she will wake up every time when he wakes up and she will wait outside if I need any help which kind of defeats the entire purpose.

We have a nanny which we use when we must and we have my family who are competent to take care of him. She just doesn't want to be away from him. If anything happens to him, even a ordinary fall, she'll feel guilty for not being there.


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## Rowan (Apr 3, 2012)

TheStranger said:


> Luckily, my son doesn't need special care. His therapy consists of a powder which is mixed into his juice and that softens his poop.
> 
> His cramps are problematic but we can't help him expect comfort him when they happen. It's usually over after a few minutes. Because of that he was from day one a horrible sleeper.
> 
> ...


Ok, it sounds more like maybe she has become really over-protective of your son. If he doesn't need specialized care and you have a nanny, then there isn't any reason the two of you can't get out of the house for some couples time. It may be that she feels guilty about his issues. Even if she rationally knows there's nothing that she could have done to prevent it, there's something about a birth defect that makes a mother feel guilty. Whatever the cause, your wife is too consumed with your son's needs. And it sounds like she's lost sight of your needs, and even her own. 

Have you considered marriage counseling?


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## nogutsnoglory (Jan 17, 2013)

Rowan said:


> Ok, it sounds more like maybe she has become really over-protective of your son. If he doesn't need specialized care and you have a nanny, then there isn't any reason the two of you can't get out of the house for some couples time. It may be that she feels guilty about his issues. Even if she rationally knows there's nothing that she could have done to prevent it, there's something about a birth defect that makes a mother feel guilty. Whatever the cause, your wife is too consumed with your son's needs. And it sounds like she's lost sight of your needs, and even her own.
> 
> Have you considered marriage counseling?


try this:
write down a priority list for her and she for you.
It is simple. the time we are awake is considered 100% of our time. Write it for one another. You hers and she yours. dont do your own, just hers. She just yours.

Wife:
cleaning 15%
working 10%
hobbies 10%
time bonding with husband 0%
time being with the kid 65%

you get the picture.It can make you guys mad if you let it, but it is a good honest way to express a lacking in the partnership.


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## TheStranger (Jan 14, 2013)

Rowan said:


> And it sounds like she's lost sight of your needs, and even her own.


Interesting thought. She changed because of this, she doesn't do stuff that she liked before. I ask from time to time does she have all that she needs and she says she is happy considering the circumstances.

The biggest change is that she never takes time to be alone. Literally never. She wants to spend every waking moment with me, him or both of us and I can't remember when was the list time she chose to do something on her own. I asked ofc, she just doesn't want to be away from us.

It's a bit strange considering she liked to be alone before she met me. Not sure what to make of it.


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## TheStranger (Jan 14, 2013)

nogutsnoglory said:


> you get the picture.It can make you guys mad if you let it, but it is a good honest way to express a lacking in the partnership.


I get it. It could be a interesting conversation.


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## Theseus (Feb 22, 2013)

Rowan said:


> Ok, it sounds more like maybe she has become really over-protective of your son. If he doesn't need specialized care and you have a nanny, then there isn't any reason the two of you can't get out of the house for some couples time. It may be that she feels guilty about his issues. Even if she rationally knows there's nothing that she could have done to prevent it, there's something about a birth defect that makes a mother feel guilty. Whatever the cause, your wife is too consumed with your son's needs.


:iagree: Amen to that!

Stranger,

It might help if you frame the problem this way: every professional child care expert out there says that time away from the child isn't just an option, it should be *MANDATORY*. An exhausted mother isn't a good mother, and so getting away is not just for her, it's for your son's welfare too!


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## schrenkbl (Oct 30, 2013)

I would say that your wife needs to figure out a way to accept help from another caregiver. You should be trying to help more with the caregiving too if you aren't already.


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## TikiKeen (Oct 14, 2013)

Dude. She *needs* at least time alone, if not therapy.

I know for me, the entire experience of the first two years with mine triggered every single underlying trauma I had. I felt completely incapable of successfully doing anything, even though I logically knew I was rocking the caregiving/mom gig, and even though I did carve out time for myself. I had to have therapy to begin to unwind some old tapes of unworthiness.


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## DTO (Dec 18, 2011)

TikiKeen said:


> Trust me, if one parent checks out, especially with a special needs kid, the marriage goes downhill quickly.
> 
> Other ideas: let her sleep and you handle nighttime kid care; alternate days and schedule it so she knows you're committed to giving her uninterrupted sleep.
> 
> ...


Dude,

Tikikeen knows exactly what she's talking about. My ex was willfully ignorant of the pressure of caring for our son with cancer. She did spend weekdays with him in the hospital, but to be honest the nurses do everything and you're really just keeping him company.

Making sure you put in your time providing care is important but it might not be enough. More specifically, you both need to accept that your lives are going to be harder (to a greater or lesser extent) than most others. We on TMB implore people to take a position of selflessness (within reason) with their spouses, and that goes extra for you two.

You might just have to grin and bear it when your wife makes you the butt of her anxieties. Your wife might have to address your needs even when she's had a bit of a long night. Just shifting stuff between your respective plates might not cut it. For instance, my ex just could not deal with the business of being sick - frequent (and lengthy) doctor's visits, physical ailments, insurance issues, emotional health, etc. So I took all that over. One day my ex is chewing me out for paying more attention to the sick child than to her (in front of him, no less).

MC and IC to keep the marriage (and yourselves going) is a great idea. Truth - my doctor said 2/3 of marriages don't survive the loss of a child. Now your condition does not appear to be that serious, but that stat should underscore the toll that constant stress and health issues take on a marriage.

I'm assuming that you at some point have been to a children's hospital for specialist care and the like. If so, that would be a great place to start for respite care resources and perhaps even training for caring of your child while you are away.

Hope this helps. Wishing you all the best.


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## hackbornyu (Nov 2, 2013)

They just want people to use the service.


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## TikiKeen (Oct 14, 2013)

Whaa?


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