Wednesday, August 24, 2011

Mended Broken Heart

Last year several of my friends lost their children.

My heart was just broken for them.

And, it continues to mourn with them.

I’ve wondered why Heavenly Father would take these perfect babies, whether they were 3 or 12, into his arms and away from their parents.

Part of me was kinda angry at Him, for them.

My faith let me believe that there was a reason and that was all I needed, but I am positive my faith would’ve been pretty stricken if it was my child, just as it was when we received Leah’s diagnosis.


About a month or two ago Elijah asked me, “What happens to kids when they die, are they grown up in their ‘perfect’ state or are they still kids?”

I told him I wasn’t sure and to ask his daddy or his Primary teacher if they knew.

I was so grateful for our church at that time, as I am most times, because of its encouragement to ask questions and seek answers.

This was definitely a question I was very interested in hearing the answer to.

Elijah came to me a few weeks later and said,

“Oh yeah mom, I asked Brother Durrant the other day that question about babies.”

-(By then I forgot all about the question)

-Brother Durrant is his Primary teacher.

“He said that when children die, their parents get to raise them when they get to heaven. So they might miss out on a lot of things on Earth but when they are all in heaven they do it together there, just better.”

Pretty profound, huh?

It definitely gives me comfort for my friends.

It’s just another reason why I love Heavenly Father so much, He always has the perfect answers for every situation.

I am also grateful for Elijah’s curious mind and how he was able to put my restless mind at ease with his curiosity.

Tuesday, August 23, 2011


I’m hoping that when school starts for the other kids, I will have more time to blog about our lives with Leah.

Don’t get me wrong, I do NOT want my kids to go back to school in a few weeks.

I love having them home and I can’t believe the summer is already over.

I will miss them terribly throughout my day.

But, I gotta start to try to find things to look forward to or I will become very sad.

I haven’t had much time to blog since we’ve moved.

To be quite honest, I haven’t blogged much in part because of time restraints and also because I have been tip-toeing around things I write.

When I can’t let it all out, I can’t write well. I’m a very emotional writer. So, take away the emotion, take away the writing.

I haven’t wanted to hurt any of my fellow Down syndrome mom’s feelings because of Leah’s abilities and her continued success.

I haven’t wanted to hurt my therapist friend’s feelings because I may come down hard on some of their colleagues.

I haven’t wanted to hurt my other kids’ feelings because I write so much about Leah and not them.

But it’s gotta stop.

I need to blog.

It’s great therapy for me and helps me process my part in Leah’s life much easier.

I also love the input and advice I get when I have a concern about her development.

I can’t have it both ways, so I’ve decided to put all of my guards and protective nature away, and blog with raw emotion.

It’s really the only way I can with any meaning…

…Leah’s therapists are okay.

Some are MUCH better than others.

One, we’ve only seen 3 times in 4 months.

Services are definitely not the same in a rural area.

I’m finding that Leah is having to reprove herself all over again.

In Niagara County, her therapists worked with her pretty much since birth, so they were able to follow her progress throughout her life.

So, even though her skills seemed so shocking and impressive, they knew she could do it; they were just ready for a surprise most visits.

Here, some of her therapists have a typical “Down syndrome lack of abilities” mentality and they don’t have that experience with her to change their thought processes.

They are making her prove her abilities over and over and over again.

Don’t get me wrong, I’ve been preaching repetition, but this really isn’t repetition. They seem to not believe she can do it, so when she does it, it’s a fluke and she has to prove she can do it again, and again.

We have to ensure she masters a skill but even mastery seems like luck, in one particular therapist’s opinion.

For example Leah has been working on puzzles on and off, for what seems like a year or more.

(I think it’s really been about 6 months)

So, her new teacher brings her a puzzle with 5 pieces.

She only lets Leah try 3 of those pieces.

Leah puts them all in and takes them out, plus one she grabs with her quick hands.

Then she puts the 4 back in.

But, her teacher won’t let her try the 5th because, “it’s too far away for her to reach.”

Later in the day I pull out a puzzle that has 9 pieces, which I’ve just been holding onto until she got a little bigger.

She takes out all 9 AND puts all 9 back in the exact places they belong!

So, on Sunday at church I used some of their puzzles and she did…

Every. Single. One.

She also was able to do a very abstract puzzle that just consisted of putting shapes (with no pegs) in a place to make a picture.

She tried fitting 4 triangles in a kite.

No color to match.

No picture to match.

She had to realize what was missing.

She had to find the right shape out of several different shapes (circles, squares, ovals, rectangles).

AND put the triangles in the right way (they were not perfect triangles).

She. Did. Every. Single. One.

I think she’s ready to move beyond the 3 puzzle pieces her teacher was only willing to let her try, what do you think?

How do I ensure Leah is challenged when her therapists don’t seem willing to challenge her or believe she can be?