LIFamilies.com - Long Island, NY


RSS
Articles Business Directory Blog Real Estate Community Forum Shop My Family Contests

Log In Chat Index Search Rules Lingo Create Account

Quick navigation:   

Did anyone see this on the Autism Speaks facebook feed this morning?

Posted By Message

lbelle821
Arghhhhh

Member since 2/06

5285 total posts

Name:
Lisa

Did anyone see this on the Autism Speaks facebook feed this morning?

It was a link to a blog "a diary of a mom"...I haven't read any of it yet other than this entry but I was touched by this letter she wrote to a new mom whose child was recently diagnosed...it's long but worth the read:

(link on the bottom)


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 she needs you to be. You do. I promise. You will.

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 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. 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.

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 her 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 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.

With love,

Jess


Link to Blog Entry

Posted 2/1/11 9:24 AM
 

dpli
Daylight savings :)

Member since 5/05

13973 total posts

Name:
D

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

I knew I shouldn't have read this at work about 5 seconds after I started because I have tears.

Thanks for sharing. Chat Icon

Posted 2/1/11 10:40 AM
 

maybebaby
LIF Adult

Member since 11/05

6870 total posts

Name:
Maureen

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

Wow...started crying a minute into reading. It's crazy how when you go through a diagnosis, everything is so raw, so much is unknown and you just feel like nothing could get better. At least that is how i felt when we went through our hardest time.

I love how she writes to always remember to take care of yourself, to put YOU first. It's so so true. When i started returning to the gym, concentrating on my own needs, it helped me be a better mom and to get through things better.

Thanks again for sharing. i passed this on to friends...

Posted 2/1/11 12:27 PM
 

Diane
Hope is Contagious....catch it

Member since 5/05

30683 total posts

Name:
D

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

LOVE it. ThanksChat Icon

Posted 2/1/11 12:48 PM
 

sapphire
LIF Adolescent

Member since 6/06

568 total posts

Name:
Elizabeth

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

Absolutely beautiful ! Thank you for posting this !Chat Icon

Posted 2/1/11 2:34 PM
 

smdl
I love Gary too..on a plate!

Member since 5/06

32461 total posts

Name:
me

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

It's amazing the bond mommies of special needs children have for each other and how much empathy we have. We all go through that. Aches for those new moms going through it. It reminds us of our own pain and how we learned to carve our way out.

I wish we could shelter all mommies going through the pain and fear.

Posted 2/1/11 2:59 PM
 

islandersgirl74
Love Being A Mommy!

Member since 6/06

5804 total posts

Name:
Michelle

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

In tears.....that was powerful!

Posted 2/1/11 3:50 PM
 

mom2aidan
2 boys & 1 girl :)

Member since 11/06

1874 total posts

Name:

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

I feel like she could have written that letter to me. I'm bawling.

I've felt everything she's said.... and I'm sure you all have too Chat Icon

Posted 2/1/11 5:44 PM
 

lvdolphins
My Loves!

Member since 5/05

46292 total posts

Name:

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

Amazing! Thank You!Chat Icon

Posted 2/2/11 1:22 PM
 

whyteach
LIF Adult

Member since 8/06

2697 total posts

Name:
Christina

Re: Did anyone see this on the Autism Speaks facebook feed this morning?

This is one of the most beautiful things I've ever read and all so true. We have our days when we do feel like we can't breathe because all we do is worry. Then there are the days when what seem like is nothing fir some kids does become a big milestone for us. I know that I do look at things so differently. If I see a kid in a store having a tantrum I never again think he may be spoiled or the mother can't parent. I now think maybe there's a reason. I teach kindergarten and I gave so much more patience because I realize no matter how hard some kids try...they just might not get it. This really was touching!

Posted 2/2/11 8:29 PM
 
 

Potentially Related Topics:

Topic Posted By Started Replies Forum
FACEBOOK IS CHANGING IN THE MORNING!!! RothschildNY 12/5/10 11 Families Helping Families ™
Hamlet - Facebook News Feed Edition Jax430 1/26/09 13 Families Helping Families ™
Do not feed your child Morning Star Broccolli and Chedder nuggets justthe4ofus 7/11/06 16 Parenting
Spinoff to Autism post- I got an email from Autism Speaks looking for participants for research study... groovypeg 10/22/08 1 Parenting
Facebook - speaks pirate nrthshgrl 4/29/09 22 Families Helping Families ™
Autism Speaks walk on Sunday Melbernai 10/11/07 0 Families Helping Families ™
 
Quick navigation:   
Currently 845181 users on the LIFamilies.com Chat
New Businesses
1 More Rep
Carleton Hall of East Islip
J&A Building Services
LaraMae Health Coaching
Sonic Wellness
Julbaby Photography LLC
Ideal Uniforms
Teresa Geraghty Photography
Camelot Dream Homes
Long Island Wedding Boutique
MB Febus- Rodan & Fields
Camp Harbor
Market America-Shop.com
ACM Basement Waterproofing
Travel Tom

      Follow LIWeddings on Facebook

      Follow LIFamilies on Twitter
Long Island Bridal Shows