Thursday, September 15, 2011

special needs marriage.

Last night was our date night.  The first one in a long time.
We had a wonderful dinner with a huge dessert and just enjoyed having conversation that didn't involve having to keep the redheads quiet the entire time.  We walked around the mall, got some coffee and headed for home. 
I so enjoyed this time together.

At home awaited 2 wild kids and a baby in need of her seizure meds.  So back to reality.
Fighting to get Mabel to take her meds only for her to start her night crying and vomit them back up an hour later is extremely discouraging.  Daniel remained awake with her for most of the night.

I'm not sure that Daniel has come to alot of the same realizations that I have and I am certain he is not in the same place emotionally that I am.  We handle things very differently; men and women. 
He sees our baby--beautiful and smiling.
I see our baby--seizures, meds, doctors, therapists, etc and then our baby, beautiful and smiling.

It's been a different process for the two of us and Daniel made it very clear to me that it was somewhat intentional of him to let that happen.  If we were both to 'fall apart' with grief at the same time we may never make it through this time of our lives.  I agree but at times, it is so isolating to our marriage for us to be on such separate pages in the journey.

Do you know what kind of a toll it can take on the state of a marriage to have a child with special needs?  Although I hate statistics, I'd like to share some with you...
The divorce rate in the United States is about 50%.
The divorce rate for marriages with children is about 65%.
The divorce rate for marriages with special needs children is 75-80%.
The number one cause of divorce or marital problems in a typical marriage is money.

Marriage is tough.  It is tough in normal circumstances.  It is tough when you are raising young children.  It is tough when you are parenting teenagers.  It is tough when you suddenly have an empty nest, or addiction or infidelity. 
Let alone throwing an unplanned, unexpected disability in the mix.
It complicates relationships on many levels and I believe especially on the home front.

When you have a mom who is home taking care of their sick child, sitting through hundreds of therapy sessions, making dozens of Dr. calls each day, researching and educating and focusing on the disability and the process that it entails and have a father who is working because he has to provide for his family and these services--there is bound to be a disconnect.
My goal in this process is not to lose myself to the process and not to lose my marriage to it either.

At different times in the last year I have approached my husband and explained to him that I am not the same woman that he married.  I apologized and explained that this new woman was much different and much changed.  I asked him to stand alongside of me, whether he understood my emotional journey or not, and just be here. 
And he has. 
It's not always the way I want it to look or feel...but he is here and that is what matters.
He doesn't always get it right just like I do not but what counts is that we are sticking it out together.

I have mentioned this before but I often feel sorry for Daniel.  He didn't ask for this life.  When you say your vows to the person you love, you do so without imagining the true
"good times and bad..."
"sickness and health..."
And although we meant them, you just always believe that you will be the exception and that something like disease or disability will not happen to your family.  What I adore most about this man is that he hasn't given what I'm saying right now any thought.  He would never feel sorry for himself or for me.  This is what we have and we will deal with it and love through it.
And I am so thankful for his ability to think this way.  He reminds me that I didn't ask for this life either but that we are one; it is our life and it is going to be ok.

I realized awhile ago that I was going to have to step it up and give the last bit of energy that I had at the end of each day to this marriage.  I couldn't let it slip away into the backlight.  I used to hate when I heard people say that "Marriage takes so much work..." because until now, mine didn't feel that way. 
I understand it now.
It takes so much work.
And you have to be willing to work at it, even in the midst of so much chaos and change.

One of the ways that I've tried to purpose myself to not lose this spark of love for my husband is just to check in with him every now and then. 
He works long hours and we are apart often.  I could easily get so wrapped up in the things that are going on with Mabel that I forget to get a status update about our marriage.  So last night on our way to dinner, I grabbed his hand and simply asked,
"Are we ok?"

His response is always the same:
"We're more than ok...why would you ask?"
He's a man; pretty cut and dry.  Simple.  Easy.
He isn't reading into the disconnect like I am and I'm thankful for that.
I know that I just need to ask every now and then because I could easily get lost in the everyday without checking in with him and then months could go by until suddenly our marriage is long gone and I have much to do with it. 

I don't always feel like I have the extra energy to put into it.  I don't want it to be work and I don't want to have one more thing to worry about most days.  I wish that I could sit back and just trust that this marriage would be ok with very little nurturing as I go through this emotional journey and Mabel goes through this physical journey.  But I have seen a time too many that although marriages should remain in tact and strong in the weakest times, they often do not. 
And that's a shame.
Someone gets selfish and someone else suffers.

Our marriage has never really been 'normal.'
I mean we got married at 19. 
Daniel joined the military and deployed out of the country 
I moved all of our belongings out of state to wait on him.
He came home, we had a baby and he left the country again only to find out I was pregnant with our second child. 
He came home, we bought a house at the age of 23 and we had another baby.
Now that baby has special needs and here we are.

Not normal.
Not by any means.
But somehow we thrive. 
Grow.  Endure. 
Love through it.

And I am confident that we will continue to do so.  But I wanted to remember this time as a growing in our love as well.  And I wanted to use this time to bring awareness and some authenticity to how difficult this life can be in so many aspects.  It's very hard and very real.  And deserves to be talked about and not tucked away.

The nights where we should be enjoying one another and our sweet baby are spent much differently than most family's and most young married couple's. 
I watch my husband dispense meds to our baby and speak with Dr's weekly, not go golfing or watching the game. 
There is some of that, don't get me wrong.  But generally speaking he is not living the same life that most 26 year old guys are living.

I am thankful for nights alone with my husband even if we have to hurry home at 9 pm for meds and even if the time we meet up in the middle of the night is not for an intimate hour but more for prayer and gentle, knowing glances.  This time is also a maturing for us and I believe we'll be blessed. 
Although it is hard, it is absolutely worth it and I pray that he will fight as hard in this to make it through with grace and passion as I do.  If he does, we will surely be ok and hopefully in 50 years we can look back and laugh at this time that was so challenging and new.
Tonight is our Back-To-School dinner, as it was postponed on the weekend.  We decorated outside for fall today and I'm baking a fresh loaf of bread as I type, 
I am so enjoying this day. 
What is happening in your world?

1 comment:


Thank you for sharing. Looking forward to seeing you and Mabel on Monday! :)