Monday, June 25, 2012

slight ranting.

I was up with Mabel in the night.  She was seizing for an hour.  Her new meds clearly aren't helping like we hoped they would.  Therefore, this post was derived out of frustration and exhaustion.  It's truthful and I am publishing it because...
it's my therapy, it's my blog and I can.
Hope you'll love me still?
I spent part of yesterday writing a post that I probably won't publish.  Just writing it gave me the release that I needed from some of the hurtful things in this journey.  The truth is, I have never been more deceived, more ignored, more questioned, more alone, or more hurt by people than I have in the past 18 months. 

But in that, I have also never been more strong, more wise, more confident or more able than I am now.  To me, it goes beyond balancing out.  It has obviously been worth it.
But I am still shocked to look back on the things that have been said, the way people have acted, the remarks, the glares, the absence and the lack of compassion that has been shown in certain situations. It is heartbreaking to know that in some one's hardest times, people can still be very cruel.  They are still not capable of truly considering the feelings of the person hurting.

One thing I have found is that people are either oblivious that their statements or questions are hurtful or they just downright do not care that they are.
How many times have I posted that Mabel doesn't sit on her own?  And yet someone who I know reads here regularly feels the need to ask me while out to dinner, "Is she sitting now, Ramee?"
It's probably going to ruin my dinner because it's ignorant and I don't deal well with ignorance.

How many times have I posted that Mabel is delayed (to a 3 month old level).  I don't know many 3 month old's that speak and yet someone asks me what words she is saying.
 "Is she saying ANYTHING?" As if appalled that she isn't.
[and may not.]

Probably the hardest part is that when I started the process of acceptance, other people started pushing me for hope.  That is such a hard thing for a mom who has grieved aggressively for a year. In my own time, in my own way I went through this process that is hard yet natural. And now when I am at a phase of accepting that my child may not ever walk, talk, eat on her own, stop seizing, or see...
others are telling me that I should be hopeful and they look at me as if I'm an alien when I abruptly and without shame tell them something that makes them feel uncomfortable.
I am hopeful but my hope is not in these things.  My hope is in the Lord.
Many of you believe that the Lord's answer is always, "Yes and Amen."
I have accepted that sometimes His answer is quite simply, "No."

I know people are curious. I know that when you see me out with Mabel that questions arise or you want to talk about it with me face to face.
I want that too!  Don't get me wrong. I love to talk about her but sometimes it's nice to talk about her like the beautiful, precious child that she is instead of all the things that she is not.

She is not sitting.
She is not rolling over.
She is not seeing.
She is not crawling.
She is not reaching for toys.
She is not holding her bottle.
She is not seizure free.
She is not speaking.
She is not doing anything more than what she was doing as a swaddled infant baby almost 2 years ago.

So now that it's out of the way, let's talk about how she is taking bites of food and she is smiling constantly.  Her hair is getting so long and she loves music.  Ask me about how we plan on getting her from place to place as she gains weight (because she is finally doing that!  One pound in a month!) Talk to me about how she has the sweetest spirit and how she is the light of our lives.
Because she IS much more than her sickness or lack of common abilities.
And I'm sick of focusing on her inability.

I'm tired.
I'm really tired of dealing with people and their own insecurities about spending time with us or not knowing what to do or say when they are around us.  I'm just tired of it.
You're either going to force yourself into our lives because you love us or you aren't.
I've accepted that too.

If you do love us, we want you to force yourself upon us.  We need love, time and friendship too.  Probably more than most people if I'm being honest.  We need connections and normalcy without worrying if we are being good enough friends in return.  We are giving all of our energy to Mabel and these kids and this marriage and we would LOVE nothing more than to be able to expand that into our past friendships and relationships but it is just too much most of the time to pursue those things.  What we need is low maintenance, nothing-much-in-return friendships because that is what we would do for you if the tables were turned.  And I think most of you know that.
End of rant.

Just needed to blow that off. 
I also want to take a minute to publicly say that I am well aware that there are so many of you who are constantly praying for us and being there for us in unique ways.  Even though we have been hurt by lost friendships, mean comments, absent church family, and other things...we have sure been blessed by people who have surrounded us that we could have never dreamed.  It is a brilliant example of how God uses each of us to bless one another at different times in our lives. 
Those people and the things that you do-big or small-do not EVER go unnoticed by me.

Tori, Janna, Kaysi-I know you are reading faithfully.  You always participate in whatever we have going on whether it be scentsy, fundraisers, my new business ventures, etc.  You are faithful friends and I NEVER get to tell you how thankful I am for that.  I appreciate you all.

Michelle-I got your email.  I always do.  I don't have alot of time to respond but I am thankful for your heart and your determination to just keep writing me.  Thank you.

Natalie, Pamela, and all my other 'special' moms-your strength saves me most days.  I love you for it.

Abrian and Rachelle-I've told you both.  To know that you have stepped up for me this year in ways that were really crucial and important was so unexpected and yet so necessary.  I am blessed GREATLY by your friendships and know I will need you even more in days, months and years to come.  Thank you for just being here and loving me in the ugly.

Kristi-Your journey inspires me.  I know you're reading and although I know we don't talk often (and really not at all) I am humbled that you take the time to visit here and think of our family.  Thank you.
I know there are many more.  If I didn't type out your name it is NOT because I don't appreciate the things you do for us or the way that you love us.  It's simply because I could never name everyone.  Some of you should know how greatly I love you.  You've been my friend forever and it frees me to be able to just live and know you will always surround me and support me.  Some of you became my friend in the thick of this and with that came a whole lot of days that are very tricky. You've stood by me and been gracious as I have tried to be the same. 
I love you all in so many different, deep, powerful ways. 
The kids got a sand box that they are playing in now. 
I am going back to pulling weeds.
Grocery shopping and dinner cooking tonight.
And maybe taking a run in the cool breeze of evening.

Feeling and letting go of our frustrations is a good thing.  We can feel, breathe, exhale, and then move on.  It's a powerful tool.  In order to be ok every day, this is what I have to do.
It's all I can do.


Unknown said...

Sweet momma I hear you loud and clear.To feel so alone in this and to never have anyone sit down and say I know what this is like and hold your hand and cry with you, but also to rejoice with you on the HUGE success of our very special children.With Zoe I always say she has issues and leave it at that . People dont understand and frankly I dont really know if they care.. I am here and I know how tough this road is. Would you take my hand and walk this road with me? we can carry each other when the road is to hard

Maywine said...

Oh my dear ---

Please do not pay attention to the mean and STUPID people who send you awful and insensitive messages.

You are doing God's work and should be rewarded in this life and after.

Best wishes to you and your family. We will keep all of you in our hearts and prayers.

C. Garson and family

Lukesmommy25 said...

I think of you and your family often after finding your blog. I pray that you will find answers regarding Mabel. I can't imagine what you go through, but you are a wonderful mother to your children. Your blog is so beautifully and honestly written.