Saturday, April 28, 2012

on hurtful people

We were in the middle of the greatest emotional battle of our lives {or so it felt like.} 
As my husband and I let go of one another's hands so that I could feed Mabel at the park and he could play with the big kids, I felt a sense of peace wash over me.

But it didn't take long before the peace was replaced with pain.  The two were separate. 
Peace in what we had worked so hard for over the past couple of days and pain in what I've dealt with for over a year now. 
She walked past me at least three times inside of the zoo.  Each of her children followed closely behind her.  Their ages looked to be 6, 4, and 2.  Her beautifully round tummy protruded with baby number four and she rubbed it with anticipation and great pride.  Her body was little.  So little that I thought to myself it would be impossible to walk through the zoo and not have back pain.  Her hair was long and it flowed graciously to the center of her back.  Her kids were calm and she was smiling. 
When she approached me at the park, she nonchalantly talked baby.  This was her 4th, she said, as if I hadn't noticed.  And it was a girl.  As she rubbed her belly I felt my own stomach tighten.  She laughed calmly stating that maybe she should be done after this but she doesn't know.  I carried casual conversation as I held my baby, tightened up and twisted in my arms.  I looked down at her for a split second only to feel myself pushing back tears of sorrow and guilt.  Such things that I hadn't experienced in a long time.  The pretty woman has such great hopes and in the next 6 weeks she will finally meet them face to face. 
I couldn't help but look at her and feel jealous.  I remembered being exactly 6 weeks out, knowing that I would see this beautiful little girl who I just knew was absolutely perfect and rubbing my large tummy the same.  I would talk to anyone who would listen about this gift that I had been given, knowing that everything was fine and she was healthy. 

When I looked around the park after she walked away I felt completely overwhelmed.  I started whispering 'I'm sorrys' to Mabel as I stroked the back of her neck while she was laying slumped over in my lap.  I don't know what I'm sorry for but I just can't help but feel responsible for her little life that is so uncomfortable and must cause her so much pain.  I'm sorry that she can't do the things that other children do and although she doesn't know any different, I still feel a tinge of guilt because of it.  I feel sorry for her.  I feel sorry for myself.  I feel sorry for her daddy.  I feel sorry for her brother and sister.  I just can't help but feel very very sorry.

On top of grieving the normal things that I have this year, I think in this moment with this beautiful expectant mother standing before me, I realized that somewhere in me I need to grieve the fact that I am not going to have any more children and I will never rub a growing tummy again.  I will never again feel someone grow and kick inside of me.  I will never again sweat, suffer, cry and pray my way through a delivery that brings a newborn child into this world. 
In this moment I grieved for Daniel and myself in a new way, once again reminding me that this process is long and complicated.
 People continued to go about their day, playing with their children on the monkey bars.  I describe these out of body experiences as 'zombieland.'  It happens in the grocery store, in the post office and this day it happened at the zoo park.  Moms walked by me talking on their phones as their children cried for their attention.  Dads answered their kids, but didn't really pay attention to them.  Life busied on all around me as I watched and felt the true stillness.  Everyone is so oblivious to what their lives could be.  I'm aware of what mine really is. 
Sometimes I just want to stand up and shout it out:
"Your child could be sick too!  You think you're lucky?  You think you're exempt? 
This could someday be you!  Wake up.  Wake up!  This could someday be you."

But I don't. 
I sit and breathe; feel hot tears and breathe again.
I hear my own breath and I whisper out loud to myself that it will be ok.  It's still ok.
I watch my husband push the kids from across the park and I realize that he knows it too.  Maybe he didn't fully grasp it until a few days ago and maybe it took something extremely painful to make him aware--but in this moment, he was present. 
He spotted me from across the park and gave me a smug grin. 
 A few minutes later as I began putting Mabel's bottle and the camera away under her stroller an older couple walks by me.  They weren't much older but I could see their age. Out of the corner of my eye, I notice them slowly look into the stroller.  Intrigued by Mabel's outstretched and flexible legs, they sat down close by.

"How does she get her legs to do that?" the woman asked.
'I don't know' I say, 'she just always has.'
This is the moment that I dread.  I never know if I will go into full, lengthy detail about the life of our daughter or if I will try to dodge the conversation altogether.  But people don't stop when they aren't satisfied.  We live in a world where no one knows their boundaries or even if they do, they don't care what they are.  In this moment they began to enter my bubble and although it's quite violating, you can't stop someone from prying once they have already begun.  And I try to remember that people are just curious.  It's starting to be obvious that something isn't right with Mabel and people just want to know.

The man continues, "Well look at those feet.  They're so soft!"
'Yes,' I answered.  'She doesn't walk or even sit up so they haven't been used much.'
Fake smile.  Trying to dodge.
"Well does she even crawl?"  asks the rude woman.
'No, she doesn't.  She has alot of medical problems so she is unable to do much right now."
I look away.  Sunglasses are on and I can't figure out if I'm getting more angry, more anxious or more upset.  I wanted to get up and walk away in this exact moment but my legs become quite heavy and in some odd way I want them to go on because I thrive on the opportunity to educate people about Mabel.  But they didn't.  I assume it was about two minutes before the rest of this story unfolded and I quickly realized how rough this world is going to be for our little girl.

Toddler girl runs by in front of us.
Rude wife says, "Oh look!  She's cute too!"
Rude husband says, "Yeah she is--and at least she can walk."
Rude wife smirks.

Still in this moment I don't know what that means.  I'm still caught so off guard even typing it.
 I was still sitting there.  It wasn't funny and it wasn't meant to be either. 
I could tell, but I am still confused as to what the intention of the comment was. 
All I know is that I slowly got up but quickly walked to my husband.  His eyes met mine and immediately he said, "do you want to go?"
I said that I did and through my tears explained why.  He gathered the redheads and we left.
In a blur.
I could have gotten through pregnant mom.  People are always going to be pregnant around me and life is such a gift.  And that is precisely why I couldn't handle rude couple.
Life is a gift. 
ALL life.
Why was cute toddler any more valuable than my sweet girl, all because she could walk?
And why in this awful world would you make a comment so harsh and hurtful?

I believe God uses these moments to strengthen me.  It lights a fire in my mommy heart to stand up and give voice where Mabel doesn't have one.  I should have had something clever to say but I was caught so off guard that there was nothing.  No words would have had the power to come against such ignorance anyway.  But I can't explain the hurt.  I can't explain the pain or confusion.
And Mabel is still so little and beautiful.  In fact, if you didn't know any better you would never know that something is wrong.  That is what is so devastating. 
What will her little future look like?  How do I prepare for moments like this?
I would expect questions and comments from children and would have been equipped to explain to them the correct way to think about somebody with disabilities.  But for an adult couple to allow such impulsive, mean, and disgusting behavior?
It's appalling.

I breathed deeply in the van for many minutes.  I looked back at my giggling girl, oblivious to her surroundings and thanked God in that moment that she is unaware.
I feel like it's a wonderful gift that she is so happy and content.

I have spent the last week taking a break from life in many ways.  I've been reading in the Word and leaning on God for new strength.  Hard moments like this have presented themselves many times over the past year but I know many more are coming.  I also know that unexpected hurt will come as well.  Hurt inflicted from people who love me and those who don't even know me.  I have built up many wall this year, hoping to protect myself from any kind of pain, afraid that I may die if I have to experience any more heartache.  But the truth is, this week I did experience some.
And I'm still breathing.
I made it through.

So I'm done putting up the walls and I'm going to depend only on my Jesus to carry me through. 
He is the only One who can and I know He will.
In the meantime, I'm riding this ride through til the end. 
Life is messy.  People are messy.
But God is so so good and merciful.  There is always room for redemption and grace.

Although they hurt me deeply, I forgave those strangers from the park right away for their hurtful words.  Shame on them for being so mean but I hope that they thought about it later and realized how hurtful it was to me...

God is using very strong, very gut wrenching circumstances in my life to teach me simple lessons of forgiveness and grace.  Inside of this home, there are things happening that are hard and deep.  I know that is true in all of our lives.  I want you to know that you aren't alone. 
We all have our battles and hurts.
I'll pray for you if you pray for me?
Somebody's turning two tomorrow.....!
Photos of Harper's party will be posted soon.


Kristi said...

Ramee - I am so sorry...sorry that those jerks will never know how precious Mabel is. Sorry that they had the audacity to say such hurtful things about your sweet girlie. I will never understand why people think they can ask the questions they do - or make the statements they do. We get the comments & questions all the time about Piper -- were we not able to have anymore of our own? how much did she cost? why didn't her real mom want her? And now that we are bringing Presley home -- are they "real" sisters? I understand that our struggles are not the same but I do feel your pain.

Elizabeth said...

I am so, so sorry Ramee. All life is precious, and those people are just jerks. I am sorry you had to cross their path- hopefully never again.

McKenna said...

Ramee, I don't follow your blog closely, but I feel as if I should. I learn so much from you every time I read. I pray your situation improves, but not because i feel sorry for you, because i feel you've earned it. You are such a strong, beautiful, wonderful mother. I've never met such a strong woman! I am proud for you. Your children are lucky to have you as a mother, as you are lucky to be their mother. You are incredible Ramee! Stay strong and keep your faith in god! He will guide you on this difficult path!

Mark Bradshaw said...

I came across your blog via Pam C. I'm not even sure what to say regarding the heartless people you encountered... it's hard to believe people can be so cruel, yet they are. All I can say is this: The moment I saw the first few pictures of Mabel I found her to be one of the most beautiful little girls I've ever seen. Her eyes are sheer sweetness and love. I know this road is not easy at all, but she is so worth loving. And you love her well. Thank you for teaching us about kindness, unconditional love, priorities, and the Lord.

dianneford said...

Beautifully written. You inspire me in so many ways. Please do not pay any attention to ignorant and rude people. They are all around us and they always will feel a need to comment on something they no nothing about. Keep your head high. You are a great mom and wife.
I have been following your blog for a while and praying for your family. Keep writing, you have a gift!

CSKennedy said...

Ramee- I have fallen in love with your blog. At times it has been a remembrance of my children's antics and at others a spiritual uplifting message to help me get through my day. So"thank you"! Now maybe I can help have to grieve Mabel. The Mabel you dreamed about and pictured. You have to grieve hard and long as it takes. Don't feel guilty wishing she was what you dreamed. You are not wishing her away - you are adapting and preparing for the fight to come. You will have to be Mabel's advocate; her champion; her voice; her legs...this is not an easy undertaking but God knew you could handle it. He will give you the grace and strength to be a mother of a special needs child. Your dreams for Mable will change and adapt and one day..I promise...the guilt and pain you feel now will be replaced with pride! And next time you will be strong enough that when someone is insensitive and jealous (yes, that was a jealous commment)to hold Mabel out to them and say "She is beautiful and perfect because God made her that way." And he did...she is beautiful and perfect and a miracle! God Bless you and your family Ramee!!!

Pam Allen said...

If I could hug you in person I would. Ramee, you don't deserve to hear hurtful words from those who are ignorant. Neither does your family or Mabel. While some couples share in catty humor and hatefulness, you and your husband share a bond of mutual winks, nods, and adoration for each other. That is a blessing above all. You are in my prayers. Mabel is so beautiful.

Lukesmommy25 said...

People are so insensitive. I wonder how they would feel if people were to ask them rude questions about their children? Adults should know better than to act like that. I also agree with one of the previous posters, the first time I ever saw Mabel on your blog I thought she was a strikingly beautiful little girl. Those eyes of hers are just gorgeous!

Heidi said...

Tears... I could of wrote this. Jack was still lying on his back at 18 months, doing little of nothing. I remember taking him to one of those mall play climbers with my older 3 and I caught people just staring at his frail little body, probably mostly trying to figure out how old he really was and why he wasnt up running around like all the other toddlers. Then a woman actually walked up to me and looked down at him and said "well get up, are you having a lazy day?" Seriously, I couldnt believe she actually said that to my little boy, without one thought that maybe he COULDNT get up... I think thats when it hit me over the head how obvious his delays were. It was all I could do to keep those tears from flowing, I felt sick to my stomach.

Like you, I felt very sorry for him and maybe for me to. This was well before our Mito diagnoses, we didnt know what was wrong with our boy, I left feeling he was never going to walk or be "normal"

He went on like this for many more months and spent his 2nd Birthday in my lap, no steps yet. That was one of the toughest days for me.

Im sorry for the lack of ignorance and compassion that day. Mostly Ive gotten use to be being forgiving, thinking most dont mean to be so rude. A lot of times they just dont know what to say, and it comes out all wrong... and then sometimes the silence hurts just as much.

Even though Jack is walking today, I know I will still have days like this, maybe a little different but the same overwhelming feelings, worries and doubts now that he's been given this diagnoses. I find myself watching the Kindergartners in awe as they run in circles, screaming, laughing and chasing one another... and Ive forgotten what "typical" children are like, so much energy, so happy and carefree... and most importantly, no pain. I still have my dark days, but so glad theres such wonderful support in our cyber world.

Your sweet Mabel isnt much different than Jack at his age, and he IS walking today, we're still waiting on the eating and many others that may never come but he's here and Im enjoying every minute of him.

Youre one amazing ma-ma, your little ones are so blessed to be in your arms each night. Just one day a a time... or one moment, whatever you can do mom. Love and hugs and always prayers for your little reds <3

Heidi said...

... oh and pregnant women, it was like a death for me (its getting easier)regardless of whether we are dealing with a genetic issue or not, it was so hard to say goodbye to that part of my life. My pregnancies were never easy but it didnt matter, I loved every minute, every kick, every hiccup :) I will miss that amazing feeling and will always be so grateful I was able to experience it all 4 times in my life... I guess we had to stop somewhere :( hugs again.