Wednesday, September 9, 2009

The Enough House


napping with his turtle ( we got that turtle in Maui on our Babymoon when I was 5 months pregnant. )


this was actually taken back in August - but I wanted to post it even though it's dark because both of my kids are laying near me and I LOVE THAT! Max loves to push up against us when he sleeps. Pretty girl - usually sleeps in the living room these days so this moment is rare.

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I just went over to a blog I love to read.
It's Finnian's Journey


She posted 2 links and asked us to read them.
I only read one and was moved to tears.

Here is the link:
http://bloom-parentingkidswithdisabilities.blogspot.com/2009/05/enough-house_26.html

I urge you to read this one.

I think it's very true that we - in general - as parents - want our children to excel. Be great - be the BEST they can be.
But when does it become too much pushing - in order to achieve something that we are projecting onto them. Our insecurities about ourselves somehow get puffed up if your child does better than yours? False pride is what that is called.
When can we just be proud of our child - just for being alive - for being themselves and for being who they are? When is that enough?

how many stickers have you seen on the back bumpers of cars that reads " my son is the top honor student at XYZ school "
um......so?
I'd like to know if that child is truly happy?
Feels good in his own skin?
is grounded and feels good about what he says, thinks, does.
feels empowered by who is is not by how he performs?

As a mom of a child with Down syndrome - I am thrust into this system with Max that has to do with therapies to help our child reach developmental milestones.

This post at the link above - makes me think about acceptance.
Loving what is.
Providing Max opportunities to live his best life ever -
but not pushing my own timeline on to him - or service providers timelines - or "typical kids" timelines. Just Max's timeline.

yesterday I was feeding Max as he sat in the ergo carrier - on me - because he seems to spit up less - choke less and there fore be less uncomfortable. I was looking at him as his eyes were closed sucking on his bottle, feeling his tummy breathe against mine and thought this is a perfect moment. It made me cry. I brushed his newly grown hair over his head with my hand - I love it feels. How I feel MORE love for him I have no idea - but I watch him and am moved to tears. Just being with him is an amazing event for me.
I do hope he can sit up, walk, talk and be understood, listen and hear you and the birds and the ocean etc, and comprehend what he needs to in order to have a fulfilling and fun and joyous life.

It's been hard at times to hear mom's of "typical" kids talk about what things are concerning them. mainly because I compare it to my concerns for Max and they seem to be focused on things that really don't matter much. ( and there is the judgement about it right there ) I tend to get angry about it inside. How can they be complaining about something so frivolous when I don't know if my child will be able to eat sufficiently, speak and be understood, hear, learn, read, walk, be included in school, be treated as an equal by classmates because he looks and acts differently, be able to understand what things might be dangerous for him to do or not do. Will he be accepted? Will he need heart surgery? Are his eyes crossing? Will the muscle tone in his tummy ever get strong enough so that he stops spitting up the entire bottle and choking and gasping for air? And I know Max is LUCKY. He hasn't had surgery. He hasn't had a feeding tube. He isn't in a wheelchair, he has great muscle tone, etc etc.... in so many ways I am blessed to be able to say that Max has not had those issues - and a lot of the mom's I know HAVE gone through a lot more with their kids and I feel humbled by what they have been through, and what their children have been through. AMAZING.

I don't always get upset by what other mom's say - but I truly don't want to have a reaction at all and be supportive no matter what - because if I am angry at them - it is separating us. If I want to accept Max as he is - I also need to accept other mom's concerns for their own children as being perfectly ok for them. It's none of my business right? Let it go Catherine!
I cannot make other mom's and dad's and people in general realize what they are saying.

I think the "enough house" has to deal with so much more than just accepting Max as he is - and myself as I am.

I've heard other mom's with children who have Ds tell me pretty crazy stories about other parents looking down on them for trying to have their kid in their class and how it disrupts the class away from their child. egads!

really?

take a deep breath - and move on.
Right now - I am dealing with being Max's mom.
He is 7 months old
and is taking a nap with his turtle, his cow, and his glow worm.
And I am grateful that this moment is perfect.

I live in the "enough house"

7 comments:

Tara said...

Perfect! The link was perfect and so were your thoughts about it. Thank you! I often live in Enough House with Eon, but then, of course, feel guilty about "wasting time". Sigh.

clearheart said...

Excellent post Catherine. Thank you for letting us be witness to your growth and learning process. Your ability to so clearly articulate this is a real gift.
It's a great reminder for me right now with where I am with Lev. It's so easy to *slip*.
Love you.

My name is Sarah said...

This is Joyce. Beautiful. Very well stated.

Sharon said...

Very good food for thought! It can be hard to put things into perspective and to be able to listent to other parents concerns without judging. My view of what is important has certainly changed over the past 17 months. All I know for sure is that our kids are absolutely perfect just as they are!

Mary and Brian said...

I love the picture of Max and his turtle! It is so precious.

ScottNLili said...

Hi. You dont know me, but I found your blog looking though Lacey's, jaxsonsfight blog. Everyone's stories are so inspiring, and I wanted to tell you how cute your little guy is!!! What a blessing babies are!! Good luck with everything, and enjoy your little man, he's just so cute!

Bahieh said...

What a beautiful post.

You are so lucky to live in the "enough house".

God bless you!

BK