Thursday, October 27, 2011

Feeling a little deflated but....

So this month is almost over and I'm feeling a tad deflated right now.

I'm feeling deflated because October is Down syndrome awareness month and I haven't posted much about it on my blog but should have-ugh!  I know, we just moved into our house, we're getting settled, blah, blah, blah-I have an excuse...whatever.

I'm feeling a little deflated because 2 people have used the word "retarded" in my presence this past week and I didn't say anything and I should have.  I can come up with excuses for why I didn't speak up  but still, there should be no excuse for that.

I'm feeling a little deflated because sometimes I can't stand how hard Bennett has to work at something and how mad and upset he gets when we make him work-like just to walk across the room to get to me.  It comes so darn easily for other kids.  I'm over it!

I'm feeling a little deflated because I don't know what the right decision is for Bennett's preschool-as if whatever I decide makes or brakes it for the rest of his life.  And then I think:
 it's been so easy with the girls and school, why does it have to be so hard with Bennett?  Preschool and kindergarten shouldn't be this overwhelming thing.

{I've always got a huge "But" when it comes to Bennett}

And this is with tears streaming down my face, I wouldn't change a damn thing.  I mean that with all my heart.  I may not have posted a whole lot about Down syndrome {but should have} this month because life got in the way but this is the truth:  I may cry in my car after leaving physical therapy once in a while or after walking the feeding therapist to the door because I'm so sick of therapies, I may see a child Bennett's age do things that he's not even close to doing and feel mad, I may get annoyed with the fact that I still have to spoon feed my child, and I may not know if I'm making the right decision with Bennett's future but I wouldn't change a thing because that would mean changing Bennett.  And that's just something that I couldn't imagine.

If you don't get one thing I write, at least get this, this is what I do know:  Raising a child with Down syndrome is not scary.  It is not a burden. It is not a waste of time.  Yes, sometimes I feel deflated because it does seem to take a lot more effort to raise a child with Down syndrome, more emotionally than anything really. But I have always told any new mom that has contacted me about how scared they are to have a child with Down syndrome:

Any hardship, deflation, sadness, jealousy, fear or exhaustion you are feeling will totally be outweighed by the absolute pure joy you will feel from your child.  It is a joy like nothing you've ever felt, maybe because you've been broken down so much (emotionally) and then just when you think you can't take it any more God {at least I think so} steps in.  And your kid does something that makes your heart swell, seriously it's amazing.  Until you've experienced it, it's hard to explain.  But God knows what you're going through, just when you need that lift, just when you're feeling totally deflated, He steps in.

Again, through everything I wouldn't change a thing except for maybe the way people see my son.  And perhaps the way people throw around a word that is very hurtful and don't realize it.  Guess I have to speak up more for them to realize it though.

While I don't plan on changing my son, I do plan on changing how others see Down syndrome.  I hope I've been able to do that a little with this blog over the last 2 years or so, at times deflated and other times totally elated.

So feeling deflated today but I know there's something big {no matter how small it may be to others} around the corner, there always is...

And I'll be sure to share it.  


  1. oh i loved is so so true. i totally started crying, because i know that exact feeling you are describing...and exactly how it feels to be totally heartbroken and then to witness something miraculous soon is without a doubt the most awe inspiring thing ever.

  2. Oh I loved this post!!! You said it perfectly. This is a great post for new moms to read. The good thing is that pure joy and pride never leaves. I still feel it when I watch Morgan succeed. I wonder if I'll always get a little teary eyed when I watch her do something that surprises me. And I think the answer is yes.

  3. Oh, Adrienne... I totally feel for you. I despise that deflated feeling. As for bot speaking up about the ugly "r" word, it's difficult sometimes... Don't be so hard on yourself. The thing I struggle with most these days is finding that balance between ALWAYS talking/correcting/educating about DS and just letting people be themselves. Don't be so hard on yourself, as for Bennett... You couldn't be more right about him... I'm sure something amazing is right around the corner :) hugs!

  4. We are all allowed these days of being deflated. And I gotta say, right now, raising my typical child is a lot harder than raising the one with Ds! It is emotional with her too and will all moms are just can't be Super Mom everyday. Tomorrow, will be a new day with new opportunities for greatness....from you and Bennett:) Hang in there momma!

  5. I hear you loud and clear. But it's true. Wouldn't change a thing. Raising pure love isn't easy, but it's the best thing that's ever happened to me. :)

  6. Adrienne, please don't be so hard on yourself. You may not have posted a lot this month ( for good reason )but every post you write all year long is raising awareness for D.S. You're a great mother and a great advocate, not only by what you say but by your example. Hang in there girl!

  7. Really beautiful post. I needed to read this today because I've been feeling deflated too. I have also been thinking about transition to school and it's a scary milestone for both of us. But you are right it's a crazy, beautiful journey.

  8. Beautifully written. I may not be in your shoes but I have very strong feelings on the topic of the "R" word as well. I would be happy to toss around ideas about preschool if you ever want to chat! I don't know much about what's in your area but I can speak to what I've seen in the past 8 years as a special educator, and even where I have Marley in preschool now, as a typical kid, all day long, with children with special needs, because I feel it's really important for her to learn compassion now, so she'll speak her mind and stick up for her friends when it matters!

    Love and Hugs!

  9. Just found your blog tonight, recognize the feelings you describe here. I have 3 girls, the youngest (8 months) has Ds too. Wouldn't change her, we love her to pieces, but sometimes things just make me feel 'deflated' like you described so well...

    Thanks for sharing, will be back to read more. (And like your decorating and crafting, too, I am a crafter as wel...)


I love reading your thoughts so go ahead and leave a comment!