[tri-med] Re: Love and marriage and disabled kids!

----- Original Message ----- 
From: "Michelle Wilson" <mewildflower1@xxxxxxxxx>
> Would anyone be willing to share any stories about their own marriages 
> with me?  One or off list is fine.  If you are still married, what made 
> you stay?  If you are divorced, what made you leave?  Are you happy with 
> these choices? I have to say that Faren has brought out the worst in Rick 
> and myself many, many times and when you don't have many 
> babsitters(practically zilch) and don't spend time together alone you tend 
> to only see this side of a person.  That makes it hard to have an actual 
> relationship together.  I will admit I've been idling at a crossroads for 
> a very, very long time.  I want to make well informed choices in my life. 
> It's hard to find the right path to take when so many other lives(spouse, 
> kids,my own) are at stake.  This must be where the >whole " Can't live 
> with 'em.  Can't shoot em"  saying comes in..ha ha.

{{{{{{{{Michelle}}}}}}}}

Reading other's responses has been interesting. It's not something people 
talk alot about out in the open as a rule.

My opinions:
Marriage is hard. It's work. It has its ups and downs. For some people there 
are much higher and lower peaks and valleys. Not everyone can handle the 
ride.
There have been a few times that I've wondered if we'd make it or if I could 
take it. One of those times lasted more than a year.

Jim and I had some helpful conversations before marriage.
One of his points was that there would be no divorce after children were 
born.
He's the product of a divorced/fractured family and felt that it's not the 
kids fault that their parents are unhappy so they shouldn't be made to pay.
His experience was ugly and he really resented becoming the 'man of the 
house' at age 15 and being expected to curtail his 2 younger teenaged 
sisters who were VERY rebellious and being caught in the ping-pong mode 
between feuding parents and actions/situations that he didn't morally agree 
with.
He felt that  parents must have a commitment to make it through 
childrearing. He said, "If this is a problem for you we should rethink 
marriage".
Interesting follow-up note on that one. Friends (with divorced parents)of 
both our children have commented on how 'lucky' our kids are to have parents 
still together. I can still remember Molly expressing awe at how envious one 
friend was of her and her intact family unit.

Another important conversation we had was when we were talking about 
starting a family and discussing some of the big issues and our opinions and 
feelings. It helped 'set the stage' so to speak as we knew somewhat where 
the other was coming from and planed to go to. Somewhat.
As you know what you think/plan on how to raise children BEFORE having 
children doesn't always pan out.......reality is somewhat different than 
that mental image.  What an understatement!

We had bumps BEFORE kids. Some pretty rough.

We had some bumps AFTER kids. Some pretty rough.

It's hard to be with someone day in and out for years and not have that. I 
believe that anyone who says they have the 'perfect' marriage with 'no 
problems ever' is a liar, delusional or quite simply unwilling to see the 
world with reality shaded glasses. Just as there are no 'perfect' people the 
same can be said for relationships.

Dealing with an atypical infant/ toddler/child has put different and unique 
strains on our marriage. It's a HUGE added stress. And Jim and I responded 
to that stress in different ways but for the most part, we were working 
together as a team.
But we did back off from each other to some degree personally. Esp in those 
early 'typical trisomy' years with Alex.
There were times I felt that it was lopsided in its division (think that's a 
real man/woman thing that many people experience typical child or not) and 
felt beaten to a pulp by the demands of it all. But bottom line was my baby 
was worth it.

We weren't as good about getting out as a couple as we should have been. We 
did have some help from my folks and Jim's Mom with watching our offspring.
We have more 'us' time now, sometimes just because neither child is home 
(those busy teens/young adults). But a lot of the time we do things as a 
family or with whatever child is not busy at the time. We really enjoy 
spending time as a family unit (most of the time because those teen/young 
adults can have attitude).

After 26 years of marriage I can say we had times that I didn't know if we'd 
make it intact. We've been fractured a few times but never completely 
broken. A few times the fracture healed stronger and we reached a new place 
after.

In some areas of childrearing Jim and I are on the same page perfectly.
On others.....well, we each have different opinions. That can cause grief 
and confusion. Esp for the kids. But the little darlings can sometimes 
figure out how to work that to their advantage. So now Jim and I are better 
about trying to keep it FROM the kids when we don't agree.  :0)
Not always successful there..........

We never sought counseling. Main reason most of the time was finances and 
not sure that we'd be honest enough with a stranger.
Sometimes I wonder what, if any, difference we might see now if we'd done 
that. Wish maybe we'd have tried it.

There are days my heart melts because Jim does something that just makes me 
think, 'what a great human being'.
There are days his breathing or chewing makes me want to throw something at 
his head.

We are now in that 'comfortable' place that many longer term marrieds talk 
about. The bloom of early love/passion is passed and we're more into the 
comfortable mode now.

I do wonder if Alex will ever leave home and how that will affect us. I am 
also aware that in terms of trisomy children we are not in the same 
situation as many.
Alex does have some autonomy and isn't dependant on me/us every 24/7. He 
requires a lot and it's stressful, frustrating and hard at times, full of 
worry and despair others, but it's not constant.

I'll admit I've wondered over the years whether we'll ever get that empty 
nest feeling that we can fill with doing what we want, when we want, with no 
considerations for anyone else. Guess I'd like that chance to be 
selfish......sometimes you get tired of giving/accommodating others all the 
time.

Michelle, the list idea is a good one.
Check into counseling and see if it's something you and Rick could do 
together. If not together maybe just you.
I know respite is an issue. If there's any stone you've not left unturned in 
that area toss it over.
Have you talked to Rick about your feelings? And his?

It's easy to talk about action/changes but it's like pushing a boulder up a 
hill many times to actually make a move. We get caught in the routine, the 
rut or the hole and it's hard to shake it up.
Sounds like you need to shake it up in some fashion to help you decided what 
you want and how to get it.
Make a move, even if it's a small one, to try and switch things up. And see 
what you want and what will work/be best for you.

Thinking of you,
Michelle mom to Alex (20, partial trisomy 14 mosaic) and Molly (17)
MichiganUSA 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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