Tuesday, March 27, 2012

Disclaimer:  I'm writing this post openly with the hopes that it might possibly encourage some of you.  If you have been through or are going through some of the same struggles that I describe here, I hope that you feel a little less alone.  Parenting is difficult and marriage is difficult.  Special needs adds a wicked twist to the two.  You aren't alone and if you would like someone to talk to about any of it, please email me: rameelin@hotmail.com
Daniel and I have had a hard couple of weeks.  No matter how hard we try, there is something that separates the two of us in this journey with Mabel.  There is slight separation in this journey of parenting alone but even more so when it comes to special needs and all that it involves to care for our daughter.  He is a great set of hands and a huge physical help to me.  I am grateful for his ability to step in, with very little sleep and exude patience and tenderness to Mabel.  After many hours, it isn't quite so simple for me.
 But emotionally, I have had to grieve parts of my marriage as well.  I love this man and will forever fight to be passionate about him in most ways.  But when it comes to taking care of Mabel and fighting for her, my priorities look different than those involved in an average marriage. 

Men seem to be able to suppress their feelings and distract themselves from life with meaningless hobbies or adventures.  Women are not as fortunate in this way.  I can't distance myself from our situation.  It is my life.  It is part of every single thing that I do.  All that is involved in caring for Mabel would overwhelm even the best multitasker (and I believe I'm pretty good.)  There are phone calls, papers to be filed, therapies, appointments, prescriptions to pick up, insurances to fight with, medicine to give, baby to hold, and 2 other children's needs to meet as well.  Each day is a circumstance unlike the day before.  It can be daunting.

Often it feels like we're living two separate lives. 
He's living his old life; unchanged, unaffected, and carefree.
I'm living this new life; one that I didn't choose.  One that I didn't desire.  One that I wasn't prepared for.  One that feels lonely.  One that is terrifying.  One that is desperate.

As he walks out the door, heading for work, I feel envious of him.  He will have adult interaction and be able to focus on something different for 12 hours straight.  And it feels, sometimes, as if when he leaves this house he forgets all that is going on inside of it. 
I pray daily that I would not feel resentful of him in these moments.
I know it pains him to think of our future with Mabel.  It takes alot, but at some point his breakdown comes and we experience a few minutes of utter sadness together.  Of course, we often experience moments of complete happiness together too.  Like when Harper says quack, for instance.  Or when Braden wears his sister's leotard and we can look at one another and laugh hysterically over this life that God has given us.  When Nora is tucked tightly between us in our big bed and our hands meet as we hold her, I feel cautiously normal.  I feel at ease and calm.

When it comes to Mabel, however, our processes are different.  We haven't quite got a grasp on our own feelings or fears so we are unable to help one another with them either.  I pray that in this time we will find ourselves and one another in new ways and be able to pull through it victoriously.  But part of me thinks that some of that is not possible and we will be left with this metaphorical void between the two of us. 

Daniel lets me make the decisions about Mabel's care.  I am so thankful for that.  Often, though, it feels like a lose/lose situation because I want him to be more involved and I want him to feel more involved.  I don't think that I'm alone in feeling this way.  Many special needs' moms express anger towards their spouse because underneath the anger they feel great fear that they are the only one making choices for their child and taking responsibility for each detail of their lives.  It is overwhelming and instead of expressing it as such, I tend to get angry about it.  Instead of just expressing how scared I feel that everything falls on my shoulders, I often react in anger. 

Daniel and I make a great team.  We can fight and yet interact really well logistically to take care of our kids.  We have the ability to make up quickly and move on.  We tend to come back to the same arguments but for the sake of peace, we always make things right.  This is a true gift that time has bestowed upon this marriage.

Just because we do not see eye to eye, or because one of us feels lonely and the other doesn't know how to help doesn't mean that we will give up. 
It's a little less full.  It's a little less exciting. 
But it's still ours. 
We know that God gave us Mabel and has placed us here together for many reasons.  My constant prayer is that we are being strengthened together through these times.  That God would bind us fully and completely.  That we would be like the thick of a braid, tangled together in the many strands of chaos around us. 

And the Lord does fulfill that time and time again.  It doesn't always feel like it, but the fruit of this marriage is evident in so many areas.  I am grateful every day for a marriage; for this man.  I have seen the destruction of a family first hand and know that what I have is a gift.  Even the worst days are not taken for granted.  Somehow, no matter what-we always make it through.  I'm thankful for a husband that will fight with me through to the other side...
Today as I was doing the dishes, Daniel stood behind me without me knowing.  When I finally saw him and was afraid, I burst out in manic laughter.  I laughed for minutes straight as he held me. 
It was a sweet, gentle release that came in an unexpected form-usually tears; today in laughing. 
It's all part of the process.  It's all 'normal' in the not so normal.
I'm learning to just accept that as it is and be content in this moment.
As I've told others so many times before, "You're still breathing...it must be ok."
And it is.  It's all ok.

"He will keep in perfect peace all those who trust in Him, whose thoughts turn often to the Lord! Trust in the Lord God always, for in the Lord Jehovah is your everlasting strength."
 Isaiah 26:4

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