I found this amazing post from an "Unknown Author" thanks to a reader found the original author Jess Wilson shared on my facebook page. I needed to keep it in a safe place as it is written so well of the journey with my daughter. It made me return to places in my head and tears fell of the struggle and the joy she has brought me. I wish I had had someone to show me something like this when I began our journey. (Here is her original post as I do want to credit her with this fantastic piece. https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club
So I am sharing it and keeping it on my Blog to not lose it. I share it for those who need a advice from someone who has walked the walk before them. I share it with love ....
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.
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 she needs you to be. You do. I promise.
When you became a mother, you held that tiny baby
girl in your arms and in an instant, she filled your heart. 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 blue 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
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. Hell, 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.
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
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 her strengths. They will feel like family.
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.
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 girl be far better than OK. You will show her
boundless love. She will know that she is accepted and cherished and
celebrated for every last morsel of who she is. She will know that her
Mama’s there at every turn. She will believe in herself as you believe
in her. She will astound you. Over and over and over again. She will
teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
And continues to amazing me and I continue to learn from her as she grows in the interdependence of adulthood with all of her challenges. She is my heart. I am so blessed to still have her in my life. God gave me a miracle. I have been blessed and changed by my daughter, my teacher, my heart.