"Don't Fix Me, Just Enjoy Me"

A couple of years ago I had a conversation with another Down Syndrome Mommy with a few more years experience. 

She had wise words for me. 

I knew at the time this wasn't just another casual conversation at a birthday party.

Something inside me said, "Listen up, and listen well.  You need to hear this!"

She humbly offered advice from her plate of perspective and experience with a side of "if I had to do it all over again."

The context was therapy.

At one point, we needed two hands to count all the the specialists in Maddie's life.  

In all her wisdom she said, "Don't forget to enjoy them."

I heard her words, and knew they were important, but it took a while for them to permeate.    

We had a full schedule of appointments for Speech, Occupational Therapy, Cranial Sacral adjustments, etc. 

It wasn't a walk in the park for any of us.

As a mom, we just do what we have to do and sacrifice what we need to for the sake of our children. 

I thought this was what life with a special needs child was supposed to be like.

I didn't see it at the time, but Maddie was so frustrated. 

I wonder if she could have articulated it, if she would have said,

"Don't fix me, just enjoy me."

Hind sight is 20/20, right?

I can see now that we are in a good, healthy place how all that effort and energy and economic resources spent on helping her may not have been for the best.  

I had a crisis of purpose, and God was whispering to my soul.

It began with a casual conversation at a birthday party.

Then, it was the thought, "why don't you homeschool?"

I opened my heart to the idea of homeschool, and it's like when I did, my eyes were then opened to see Maddie the way she was meant to be seen.

Nothing, thus far, has been as rewarding in my motherhood journey as homeschooling.

And it's really not so much about what she's learning (or not learning), it's much more about discovering what makes her tick.

It's noticing that her attention span is very limited from one day to the next and connecting cause and effect.  

It's seeing that look in her eye and the joy she feels when she gets it.

It's connection.

And isn't that what life is all about?

I would venture to suggest this idea of trying to fix our children is universal.  

It may rear its ugly head more easily in children whose needs are easily identified, but it could be true for any parent.

My friend's words were so wise,  I believe they are worth repeating.

"Don't forget to enjoy them!"

Let's Catch Up, Shall We?

We had an unforgettable summer, in both good ways and bad.  

Maddie just turned 7, which seems so surreal.
She picked out water balloons at the Dollar Tree and wanted to throw them on her birthday.

She would get really frustrated when they wouldn't bust!

Her Daddy taught her to throw them high...

Success!

  

We are still working on potty training but definitely making some progress and heading in the right direction.

  

She's still not sleeping through the night, and it seems like we may have to look into another sleep study to to check on her sleep apnea.

  

Her expressive speech has improved drastically.  

The other day we were in JCPenny's looking at purses and she said, "ooh, look Mom, cool, huh?"

It seems insignificant, but this was the first time I remember her stating an original thought on her own that wasn't just repeating back something said to her, or asking for something she wanted.

We have been very focused on homeschool lately.

Throughout the summer months, we tried to do homeschool, but we could never really find a rhythm.  It was very hit and miss, and Maddie was not exactly cooperative.  

I had invested in a set of curriculum that targeted neurodevelopment, thinking it would be the perfect fit.
As it turns out, it wasn't.  

In August, I decided to shake things up and focused on reading and having fun.
Armed with just a picture book, Jesse Bear, What Will You Wear?, we began a whole new homeschooling adventure!

Together we made our own Jesse Bear.
(before you think, oh i could never do that, believe me...if I can do it, so can you.
I made lots of mistakes in the making of Jesse Bear, and he looks more like the Hunchback from Notre Dame than he does a sweet, cuddly bear, but Maddie doesn't care! She loves him!)

She practiced her scissor skills when cutting out the pattern.
We used fine motor skills to stuff Jesse Bear.
And we discovered how wonderful the stuffing feels, a new sensory exploration!

Before we sewed Jesse Bear up, we gave him a heart.

We read Ephesians 4:32 "Be kind to one another, tenderhearted, forgiving one another as God in Christ Jesus forgave you."
We talked about how Jesse Bear's heart is kind, tender, and forgiving.

On one of the pages in the book it shows Jesse Bear chasing butterflies with a net.  Maddie picked up on that and I found a butterfly net at the Dollar Tree.
We "caught" butterflies and counted them.

 The "butterflies" are just a pad of paper I found at Mardel. I folded them in half, thinking they would flutter.

We had a blast! And she just so happened to catch 7 butterflies on her 7th birthday, so we talked about how old she is now.

I only intended to spend a couple of weeks on Jesse Bear What Will You Wear? but she is still so excited about the book, we continue to read it every day.
She's began picking up the words and can read "red","pants","bear", and "wear."

Next week we have the Down Syndrome Association of Central Oklahoma's annual festival and fundraiser with a 5K run.

We are gearing up for that and excited to see our friends.

Maddie has already decided she wants to be Minnie Mouse for Halloween (which she absolutely LOVES!)  Of all the holidays, I would never have guessed Halloween would be her favorite, but it is!

Hopefully, I'll keep the blog updated more often now that we have seemed to find our daily rhythm with homeschooling.

Until then,
Thanks for stopping by!