Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Wednesday, October 5, 2011

You Will Be Ok!

Read this on a friend's note!  It was while we were in PICU after some pretty upsetting discussion with the doctors this weekend.  This doesnt exactly fit our situation but it is definitly fitting in alot of ways. If you are a mom to a special angel then you need to read this, if you are a friend to a mom of a special needs child you need to read this!

My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what he needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby in your arms and in an instant your heart filled. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand his strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet boy be far better than OK. You will show him boundless love. He will know that he is accepted and cherished and celebrated for every last morsel of who he is. He will know that his Mama’s there at every turn. He will believe in himself as you believe in him. He will astound you. Over and over and over again. He will teach you far more than you teach him. He will fly.

You will be OK.

And I will be here for you. Every step of the way.


Sarah k said...

Thank you for sharing this Tami. I needed some of that for my own soul as we are fighting many fights here for our Jer and all our children that can some days be overwhelming. People on the outside just don't get why we don't push here or do this or that. They don't know what it's like to make decisions and second guess yourself or to need to see something or hear something. Thank you.

Terry said...

This is a wonderful story! So much truth in it!
Thanks for sharing it. :)

You are a strong person and a wonderful mom. :) Follow your heart {{hugs}}

THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year

Kisses in the Wind

I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.

May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.

When Love Takes You In!