Saturday, December 12, 2009

The Reality Of It All

Here is an little bit of a post from a long time ago...but still feel that it explains things:

It is said that parents attach to children through core-level dreams, fantasies, illusions, and projections into the future.
Disability dashes these cherished dreams.
The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning.
Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions.

Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being.
Recovering from such a loss depends on one's ability to separate from the lost dream, and
to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task.
They must raise the child they have, while letting go of the child they dreamed of.
They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams.

To do all this, the parent must experience the process of grieving.

Although its been 4 years, I still think I am in the process of grieving, trying to do this, to learn to survive this. One would think I'd be past this stage, and sometimes I am, but I often revisit it. As much as I'd like to be done with it, there are things that just make the whole reality check thing come into play.

I read from another parents blog once and it stuck with me -"We some times have to take the opportunity to step out of the situation and to be by ourselves, and then just lose your emotions for a few minutes. Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their minds, to cry hard,and just stop being the brave little soldier for a while".

So true. Sometimes the reality of the situation is all consuming. It doesn't mean you don't love your child, because if you are any type of parent at all you can't help but love them. You want to protect them with ever ounce of your being. That is one of the struggles, one of those things that creep into your brain at night and keeps you awake at night. Will I be able to protect my child? Will I be able to provide for my child in the way that he needs? Who is going to care for my child when I'm gone? These are just a few of the mind games that go on at night.

Then once you're done with the struggle of fighting yourself and your own demons, you need to address the reality that the stress and emotions of having a SNK makes marriage difficult.

A large number of parents with a child that has a disability end up in divorce. Some people think "oh gosh, we're strong that would never happen to us." Well guess even the best, it sometimes happens. The divorce rate among special needs parents is almost twice that of parents without a special needs children.

Then there are the fights. The fights with schools, the insurance companies, the doctors, therapist, the list is endless. Sometimes you even have to face challenges from your spouse, families and friends about what the diagnosis is or what it means, how to pursue the correct treatment and environment for your special needs child. Sometimes sharing that you have a SNK, friends tend to become "to busy" or do not understand what you're going through and that friendship seems to fade away. (to that I say listen to this song)

The stress of raising a SNK begins to take a toll on a marriage. You end up feeling alone. Its difficult because each parent grieves/deals with issues in their own way.
I get consumed with researching the hell out of everything trying to figure out the future (wishing for a crystal ball), while my husband just would rather not know all the scary details, and is more of a day to day issues guy, accepting thing. He's famous for saying "It is what it is"

Don't get me wrong, neither of us is wrong for the way we go about things, but it adds stress and resentment on the relationship. We are both very committed to Daniel, we both love him with all our heart. BUT we often disagree on issues, and how to go about them. But the end result we both want, we just have different ways to get there. I am more aggressive, he is more passive.

So sometimes in marriages when these types of things arise, it is one parent that ends up taking care of the day to day care of the child, the fights with whoever , while the other parent is making the money to support the family. Sometimes this cause the resentment of 'being stuck'/'not having adult contact', or the parent that is working feels resentment because "all the pressure is on them".

Its a difficult time needless to say. Here are a few points I found on another article; although some are hard to do when you're in the middle of the argument.
  • Use empathy with your partner
  • Reflect back what you understand
  • Avoid dangerous comments
  • Compromise with each other
  • Be flexible
  • Keep arguments from escalating
  • Fight fairly
  • Make repair gestures
There is also this link to a post a few years back: HERE
I am sure that most of it still applies.

Sometimes all you need to go into a room and have a good cry.
And take some time away to just regroup and get that smile back on your face.

Now all that being said, don't think that either of the parents regrets the child or resents the child. Its not the child that they resent, its the disability that sucks.

Here is another link for ways to try to save the marriage.


beauty obscure said...

I definitely don't think you should "be over it by now". One of the things that makes that hard is that perspectives change when the child gets over. It's one thing to be holding a 6 month old baby and thinking they will never walk...6 month old babies aren't supposed to walk... It's another thing to have a four year old who doesn't walk...
Good luck to you and your family in your struggles. Your little boy is adorable and so smart and I can't make your life better... but I promise to try and make the world a better place for Daniel to grow up in.

Jacqui said...

I think hubby and I are close. We have to be because we not only live together and deal with the whole special needs thing as parents together, but we work together as well. What a recipe for disaster! I keep hoping that we go against the stats.

Thank you for all the great resources.

C said...

A couple of book recommendations, to springbooard from your very good post...

"The Mood Cure" -- supplements and etc. that can be helpful when one mustn't lag in energy and focus and yet... one lags in energy and focus -- emotional as well as physical.

John Gottman's "The Seven Principles for Making Marriage Work" is, in my opinion, the best out there on this subject -- sounds like you may have encountered some of his writing already from what you wrote.

Glad you wrote, Melanie. Hard things sometimes screw up the best and most beautiful ones -- here's to slowing that up.

blogzilly said...

I've been struggling lately, hence my lack of presence on the net. This post, and even the one you wrote before, really sums it up. Very well written.

I'd say that I hope things can improve for you, but you already know I feel that way and already know that I wish the same for me but can't achieve either.

Anyway...good post, thought I would poke my sorry head up long enough to tell you that.

Dawn said...

I can't even imagine the number of emotions you go through on any given day. But you seem to handle it with a finesse so few have. And the first pic of you and your lil man, is one of my fave pics. Ever.

Wherever HE Leads We'll Go said...

Very well said. I am not sure that we will ever "get over it". There will always be something that comes up and makes that grief fresh again (just my opinion). I am only 2 years in and I defintely have a WAYS to go. I have dealt with some things, but I know there is work to be done.

And you are so right about marriage. It is hard work when everything goes smooth. Having a SNK makes the road a bit bumpy and definitely causes friction between spouses along the way. For us, we don't have it all figured out we just know that divorce is not an option that we are willing to consider. It helps to know that on those days when things are looking bleak.