Let me be real...........for just a second

If you read my post from the other day, you know that I have had a lot of my mind recently.  And while, my sudden emotional reaction caught me slightly off guard, now that I reflect, I'm not that surprised.

To be honest, I have been harboring and suppressing some intense emotions for a while. 

Prior to Kamdyn's 2nd birthday, I was told over and over that her gross motor would take off when she reached 2.  "You'll be surprised.  She'll be all over the place by the time she turns 2." one of her therapists told me.  I thought 2 was the magic number.  I remember when Kamdyn was a baby, and I first saw this chart.  I thought, Walking:  1-4! Are you kidding me!  Could there be any bigger of a range!  Kamdyn will be closer to the 1.  I just know it.  And now, here we are.  And I'm going to be real for a second and tell you that it is going to be a while before Kamdyn walks.  I'm not lowering my expectations or doubting her.  I just know my child.  Walking with a push toy is still scary for her, but we are trying. She exerts every muscle in her body, and she pushes to stand, and we clap and celebrate like you wouldn't believe, but she can only stand independently for a second or two before plopping down.

She's just not there.  That's all there is to it.  And I'm going to let you into the recess of my heart right now, and tell you that it hurts.  It hurts that she's not there. It hurts that what I expected didn't happen.  It hurts that children her age run circles around her.  It hurts that there are so many activities she can't fully experience, because she can't walk.  Many of her peers with Down syndrome have surpassed her, or others coming up behind her in age are mastering skills that I have only recently seen happen.  I've been pushing this hurt down, because I know it doesn't matter.  I know that she will not be in Kindergarten and still crawling.  So in the big picture, it's really no big deal, and that's what I keep telling myself.

As many of you know, Kamdyn had tubes put in her ears on May 30.  Last week, she had her ENT follow up and repeat hearing test.  Prior to the tubes, Kamdyn had spent a year in the mild to moderate hearing loss range, because her ear canals were too small for tubes.  After the tubes, her hearing tested in the mild hearing loss range.  We were left with the impression that this was an improvement, and everything was fine.

Then, at the NDSC convention this weekend, Brad and I went to a session about hearing by an audiologist.  Her words exactly were, "There are two kinds of hearing: normal and not normal, and you shouldn't accept anything less than normal."  So I find myself feeling ticked.  Why are things passed off as hunky dory, when they are not.  Kamdyn is having a more in depth hearing test coming up, and the audiologist this weekend recommended that if that does not come back normal, we should push for an ABR(hearing test under sedation).   

I had heard from many people that they noticed an immediate difference in their child after tubes.  I cannot say I saw an immediate difference.  But now a couple of months removed, Kamdyn's speech has started to progress.  Is it the tubes?  Or did she just get it?  I don't know.  Kamdyn now says:  stop, juice, mama and dada (with meaning), no, kiss, and she tries to repeat other sounds. 

I cannot even tell you how much it thrills me that she is starting to pick up some of this and try to repeat sounds, which she couldn't do at all a few months ago.  Speech is a scary area for me.  I can dismiss gross motor and walking and push it to the side lines, because I know it will come, but speech is in another dimension. 

Let me first say that if you know me, you know that I value all people and all abilities.  A person should not be measured in terms of ability. 

But since I'm being real for a second, I will admit that I want Kamdyn to talk.  Of course.  But I want more than that.  I want her to speak clearly.  I want the stranger on the street to be able to have a conversation with her and understand it.  Some people with Down syndrome speak clearly, articulate, even given public speeches, as we heard this weekend.  Others are very difficult to understand.  Some people may disagree with me, but I will venture to say that there is more to this than just how much oral motor exercises or speech therapy someone receives.  I tend to think that just as some of our kids have heart defects and some don't, some GI issues and some not, some sensory issues and some not, some people with Down syndrome just have serious speech disorders or low tone, and they are not able have the speech intelligibility that others are.  It doesn't mean they aren't smart.  It's just the way it is.  So I am trying to find the balance of working on the things I know are beneficial, but not placing the pressure all on myself.  As a mom, the pressure I place on myself can be crushing, breath taking. 

And I'm a little out of breath right now.  One thing I am learning about this journey of special needs is that it moves in cycles.  Right now, I am cycling back to the area of acceptance.  Accepting the now for the now.  Letting the future work itself out.  Knowing everything will be ok.  Accepting whatever may come.