Thursday, October 21, 2010


Today I'm feeling a little weepy.  I am trying to adjust my expectations, put energy where it's not wasted and minimize the extras so I don't lose my mind.  I'll start with Expectations.  Getting a prenatal diagnosis that my baby has Down syndrome was a HUGE adjustment in Expectations. And those expectations are continually having to be adjusted.  Let me just say that controlling my expectations is already a tough area in my life that I have been working on, even before Elijah was conceived.  God just decided to up the ante a little.  Firstly, I should be clear: what I'm grappling with has little to nothing to do with how Elijah is doing.  He is doing all he can, and in my mind he is a champion and a warrior who inspires me daily. The grappling all happens in my own head.

When I first received the news that Elijah has Down syndrome, I assumed the worst. I thought of institutionalized kids; slack, blank faces who comprehend little to nothing; and physical features that set them vastly apart from their peers.  My expectations for what my child would look like and what my child would be capable of were devastated.  Then, I started talking to and meeting ACTUAL, real people. People who have children with Down syndrome.  It painted a significantly different picture.   The children I met were part of loving, active families, with faces full of joy and wonder, who did look a little different than the average child...but who were adorable and beautiful just the same! I started to realize that, Wow.This isn't going to be quite as different and scary as I imagined it would be.  Where did my preconceived notions even come from?  Certainly not from any real knowledge based on people that I personally knew! So what formed this sad expectation I had?... 

Now that my initial expectations are adjusted to fit a more realistic picture of what Down syndrome looks like, I work on controlling my expectations about how fast Elijah will learn.  I am starting to understand that he will learn, he will develop, but it will be at a pace that is different from what my firstborn did.  When he's 30, will it matter if he walked at 12 months or at 24 months? No. It really won't.   

My other struggle, which is especially frustrating, is in the area of State and Government help.  There are wonderful programs set up to help us, but I feel like they are designed purposely to have you jump through impossible hoops so that you'll give up, go away, and leave them clinging to the dwindling funds they have left. So, since Elijah is doing relatively well, the hoops get more complicated.  I feel that I have to down play his improvements to have anyone take me seriously!  I just want to shout, He has Down syndrome, people!  It's not going to just "go away"!  Elijah turned 6 months old today.  I should be happy, but my happiness is clouded by the System. At this point, we have no therapies in place to help us work with Elijah.  I'm makin' this shit up on my own and hoping I'm not creating some bad habits that some therapist down the line is going to tell me I've added to.  So I struggle not to second guess myself.  I call. I rant. I leave messages. I kill with kindness.  I convey concern.  I advocate.  It's all I can do, but sometimes it just doesn't feel like it's working.  And I have no control over it all.  That's right about what it boils down to, isn't it? Control. Control and Expectations.  I expect to be able to help my son, but I have no control over whether I will or not. I'm finding it's much more emotional to feel helpless when you have been put in charge of helping a baby survive on this planet.  When it's just about me, and the expectations and control issues are about myself...well, that seems pretty inconsequential right now.   I'm doing all I can. Literally. And I'm trying to give myself a break, give Elijah a break and remember that things are going to work out...but they'll work out the way God planned, not the way I planned. 

When I can do it (which I'll admit is not often enough), letting go of the Expectations and Control is...well, FREEING.  My claw-like grip from how I think things should go, relaxes.  In it it's place is Surrender. Ah, Surrender. When I have visited you in the past, you have calmed my mind and my fears.  Standing face to face everyday with the expectations I have to redefine, forces me to take a good long look at my Ego and how that fits into this picture as well.  It's humbling.  ....There. I said it.  I have an Ego.  It wants some things to be a certain way. But that "way" might not be in the big picture. So, I re-adjust.  In some ways, it's kind of amazing.  I just might have gone through my life expecting that things will always go the way I want them to.  What's happened instead is that I don't know what's next.  It's an adventure. I have no doubt that my Expectations about life, and milestones, and what therapies we should be receiving will get the best of me now and again.  Like I said, God upped the ante.  And some days, like today, will cause me to be a little weepy about it.  But I'm okay with that.  My expectations are high because I want to be the best possible person I can be.  I want to be the best possible Mother to my children.  I want my children to have the best possible life experiences.  My crazy expectations come from a really positive place.  That's not all bad.  The person who ultimately suffers the most when I let these expectations take over my life, is me.  I will aim to be the best possible person, Mother and life-experience creator for my children, but I also need to know when to Let Go.  And I'm working on that balance...

Happy half-birthday to my littlest sweetie!!  Here are some pictures from this weekend, while a friend was holding him.  (Try not to be distracted by his pants being pulled clear up to his chest.  I promise not to let him go to high school like that...) :)




Jessica said...

Sorry you are struggling to make peace with things right now. I remember when my daughter was young I felt the I was racing against some sort of clock to get her the help she needed and jumping through all of the hopes to get there was so frustrating. Hang in there and just know you are doing the best you can for your little guy.

Anonymous said...

Oh my Gosh!!! What a little cutie. What a great, happy smile. I can sooo relate to this post. I live this one in so many areas of my life. I get it, you want what is best for your son so you charge ahead mama bear instincts blaring. Then you hit that brick wall and your frustrations take over and leave you in an angry impotent pile of nowhere higher to go, that supervisor has no supervisor. Six months is six months, nothing to them, an eternity to you. (ok, maybe I am projecting too much, but this is me). All I can say is I am 100% positive any therapies you instinctually provide are right on. At six months any love potions or cuddles or stretches that seem right to you are indeed right. I think alot of us struggle with this one... balancing our activities, responsibilities and sanity so we can make sure we stay centered. Seems easy until (from our perspective) something or someone gets in our way. That is where we HAVE to let go and let God. It is our any chance, sustenance and way. Every time I stray from this reality, life takes me to an impasse of my own making. Let go and let God girl. I know you know this already, I hear you, been there soooo many times. I think it is a natural consequence of being human.

P said...

You got tips from Club 21 therapists, you are working from a base of knowledge in addition to instincts. Keep going!!! On all fronts. You got this hurdle and we can help change things for others (eventually, in the long term when we find time in a few years!). Sometimes I think that is why we are stuck, to assess the long term problem. I am too hesitant to go down long fighting roads too, see what other options are around (local playgroups) as you can get there while you work out the " free" stuff.

Chris P-M said...

Jen, your son is SO cute! I definitely share those feelings of vascillating back and forth with expectations. They just HAPPEN, and it is hard to control them. Then there are all of the "what if's..." As mommies, we just want to know that we're doing ALL WE CAN for our little ones. There's no method for knowing what is always the right thing to do, and we're left with relying on our intuition (and THAT'S not always easy to trust either!) I think you hit the nail on the head when you said: "Ah surrender. When you have visited me in the past you have calmed my mind and my fears." It's so hard, but that's what it does take.


P said...

And to quote Dr Laura, you can't cure normal. It's the system that's profoundly broken--not your reasonable expectations.

Heidi ★ said...

I swear that smile could melt the coldest of hearts!

I absolutely get where you are coming from as far as control & expectations in parenting/wanting what's best for your child. My situation is very different from yours, but the ending result is the same - you have to let go & let God.

It is the single most difficult thing to do I believe, but no matter how hard we might fight, if it's not in the direction of God's plan, nothing will be accomplished except wasted time.

To want to push forward for your child is normal, but sometimes God needs to do the pushing, not us. I am sure you are doing absolutely everything you can for your boy, & that smile says it all!

Suzanne said...

Remember when I told you I have a theory that all of us moms who have kids with Down syndrome are control freaks? Because I know I am, and I think my son's job here on earth is to teach me how to let go and have such a beautiful little man and he is going to teach you so much! Part of that journey is going to be the weepy days, too. You have such great insight! Suzanne

Tracy said...

He's darling Jen!

Valeri said...

Tricia is one of my very best friends. I've heard so many great things about you. Your blog is
AWESOME and one of the most inspiring love stories I've seen for awhile. Congratulations, you have a beautiful family-your boys are wonderful!

Olivia said...

Happy half birthday Elijah!!!
I was tearing up reading your story about Christian. I am glad everything went well for you.
I love your guest posts too!
Even though I dont see you anymore in our old Mommy and Me with Synthia, I pop in and out and read your blogs. I am thinking about you guys.
Have a great November!

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