Lovin' Life with our blue eyed beauties

If you have a child with a disability 

you have probably gotten "the feeling".   

The one you get in the pit of your stomach 

 when you see a typical kid doing something 

and you wonder if your child with a disability 

will ever be able to do it.   

And you hope that it will happen.  

But you have to be realistic and 

in the back of your mind you know 

there is a possibility that it won't.  

But you don't want to sell your child short 

so you go back to hoping it will happen.  

And then that realistic part of you 

taps you on the shoulder.

And you know that no matter what 

your child accomplishes you will love them

and accept them for who they are.

  You go back and forth.  

Wondering, hoping, accepting.   

Wondering, hoping, accepting.

It's a delicate balance, this parenting gig.  

Throw in a child with a disability 

and you find yourself teetering. 

Some days more than others.

Then comes the part of parenting 

a child with a disability called regression.  

When your child has a skill  but then they lose it.  

Or they get beyond a negative behavior then pick it up again. 

 Apparently summer regression is pretty common

 among kids with Down Syndrome.  

Lila is only 5 so this is pretty new territory for us. 

Lila has regressed this summer.  

 In a big way.   

My lofty goal of having her totally potty-trained

 before the next school year 

went right down the..... 

well, you know.   

She was "mostly" potty trained at the 

beginning of the summer.   

Then we had her port installed, and waited

 too long between treatments. 

Unfortunately a common side effect 

of not keeping IGG levels at a consistent level

 is constipation.  

Now she's barely potty-trained at all.  

We have her on a schedule, put her on the potty, 

and she says the same thing almost every time.  

 "I can't.  My bottom hurts."   

Sometimes we get lucky and she will go.   

I almost want to have a party when it happens. 

 She's 5, almost 6.   

It's starting to be very discouraging.

 Back to the port, it has been very difficult for her.   

She has Sensory Processing Disorder 

and that port really bothers her.   

She just can't figure out why she has 

something underneath her skin.  

She messes with it constantly. 

 She shows it to us and

tells us, "This my port."

It got a little better after she had her

 first treatment through the port.  

She got so excited when she realized 

it no longer hurts to get her treatments.   

Of course we had to strap her in a Stokke chair 

and it took both Nick and I holding her still

long enough for me to put the EMLA cream 

on the port to numb it before treatment

 She is so on edge, over-stimulated, 

whatever you want to call it, 

that she doesn't even give full hugs anymore.   

She gives little sideways hugs. 

 She's a big sensory mess.

In summer school the past three weeks 

Lila ruined about 6 shirts.  

By chewing on them.   

When she was 3 she would chew on long sleeves 

occasionally when she was over-stimulated 

so we bought her some chewelry.   

They worked well!  

We sent them to school with her,

she used them when she needed them, 

and was done "chewing" in about 6 months.  

Guess what I ordered yesterday?

     Chewelry. 

 I feel so bad for her 

and I don't know how to fix it. 

Yes, we have told her not to chew on her shirts.   

There have been consequences.  

It just doesn't seem like something 

she can control right now.

Lila has also regressed in handwriting.  

Even though we have been practicing.

She absolutely loves writing her letters.  

I really thought she would be able

 to write her last name by the coming school year.  

It's not going to happen.  

She's not even close.  

She can write her first name. 

I'm thankful for that. 

 I know a lot of kids can't do that 

and I try to keep that in mind in times like this.

While I sit and write about how I feel 

about Lila's regression, I know it bothers her as well. 

 When I take her to the potty 

she will say, "It dry, mama".   

And I say "No, Lila, it's not dry.  It's wet.  

We'll keep trying."   

Then she says, "I sorry, mama".  

Sweet girl.

Again, I wish I could fix it.

Thankfully there is 

so much good stuff.

So much.

Sometimes you just have to talk 

about the not-so-good stuff too.