A Better Me

Leah LOVES her siblings!

She practically jumps out of my arms if one of them sits next to us.

They love to play with her and include her in almost any activity they do.

Leah is Sarah’s baby doll.

She is Elijah’s TV buddy.

She is Hannah’s student.

She is Emmanuel’s gamer friend.

Her world is going to be rocked when they go back to school.

Who is going to play baby with her?

Or watch TV with her?

Or teach her?

Or play Madden with her?

She is going to be lonely and she will miss them all so much. I guess I have more roles I will need to fill.

She will be starting about 8 therapy sessions a week soon, so that will keep us busy.

Plus she will have ME all to herself! How can anything be better then that?

We will both miss the kids so much, but I have to try to look at the positive things which will come from their absences.

I will have more time to focus carrying over the lessons we’ve been taught by Leah’s teacher, physical therapist, speech therapist, and soon-to-be occupational therapist.

That, in its self, will be equivalent to several full-time jobs.

I was planning on transferring to a 4 year college in a few days. I am more then half way finished with my undergrad degree for special education and I was hoping to kinda fast track the next few years so I could be employed when Leah starts school.

I put that on hold.

Leah needs me home.

The day care she would’ve been going to would’ve been just fine for her. It was on campus. The educators seemed nice enough and the facility was very accommodating.

But Leah needs me home.

It’s taken 4 years to get where I am now, I can wait another 4 if I need to. I will never get this time back with Leah so my degree can sit a while.

I don’t need to be super mom. I just need to be mom. So that’s what I am going to be.

Plus a wife.

And a teacher.

And a physical therapist.

And a speech therapist.

And a occupational therapist.

And a playmate.

And a housekeeper.

And a financial advisor.

And a accountant.

And a Laundromat.

And a chef.

And a…

Happier me, in the end, because I chose to be all of the above for my family.

School can wait.

When I think of things from an eternal perspective, I will always know that I was here for my family. In the next life, I will not have any regret. We scrimp and borrow and pinch pennies so I can do it, but we do it because in the end, none of the other stuff matters more then family.

This puts A LOT of pressure on Steven to provide, but it makes him a better provider, honestly.

We have never went without.

There have been times when he has worked 2-3 jobs so I can be home.

He has excelled in his career.

He has more then tripled his income in the past 5 years.

I think the fact that his family needs him to, has encouraged him to work as hard as he does.

He is an amazing provider and we will be eternally grateful for him and his self-less choices too…

Sometimes life is better when it’s not about you, even when you really want it to be.

Lessons

I’ve been having a hard time blogging lately.

I started blogging because I was counseled by my Bishop that I should.

And I have continued because it has been very therapeutic.

But, everyone knows about what Leah is doing before I “tell” them.

I feel like I am loosing my ability to share the intimacies of Leah’s accomplishments because everything I say is old news, even if I haven’t seen a person in months.

But it is therapeutic.

And my friends like to read it.

And I can brag. ;)

So, if you read this and I tell you the same things in person, just humor me…

K?

I’m starting to understand the “Person First” terminology better.

I’ve always thought of Leah as Leah first.

I never think Down syndrome first, even if that is what I mostly blog about.

Leah is Leah.

Smart.

Beautiful.

Stubborn (just like her daddy).

Silly.

Strong.

Spiritual (yes, 1 year olds CAN be spiritual, trust me).

With an extra 21st chromosome thrown in to make life interesting.

Now though, Leah is starting to look more like a kid with Down syndrome.

She didn’t before.

Maybe because she was so little, she just looked like a baby.

But really, it doesn't matter. Leah is still stunning.

Even when I can’t help but to see Down syndrome though, it is not the first thing I think of when I see Leah.

I still just see Leah.

It’s human nature to notice other people’s differences.

Differences make us unique.

But, I have always been a secret starrer.

If I saw someone with a disability, I would notice the disability first and stare at the person (when they weren’t looking, of course).

Leah is teaching me that there is so much more to a person, then the disability to stare at.

There is a man in our church who has severe Cerebral Palsy.

I have either stared or looked away when he was near, because I didn’t know how else to react to him.

Steven, on the other hand, sits with him, gives him sacrament, adjusts him, and talks and jokes with him.

He is truly Roy’s friend and has been since the day they met.

The way it should be.

Leah was sitting with daddy and Roy yesterday at church.

She was smiling and being silly with them both.

The happiness on Roy’s face was priceless.

In that moment, I was able to look differently at the world.

And look differently at myself.

I didn’t see a man with Cerebral Palsy being entertained by a baby with Down syndrome.

I saw my baby making a man smile.

It was a definite, “Ah Ha,” moment, that’s for sure.

I guess we all have our lessons we need to learn.

I just think it’s funny that my 13 month old (tear) is the one who is teaching me so many of mine.

Changing

Leah is changing.

She is growing.

She has been sleeping more.

Yesterday, when I woke her from her nap, she looked different.

As if she literally grew over nap!

She probably did, anyway.

Yesterday after football and cheerleading practice, I noticed her Down syndrome traits like I never have before.

I could not, NOT see it.

It was strange, really.

UGH!!!

Why does it even matter?!?!

I want to be one of those mom’s who don’t care.

I don’t want to be sad.

I wish I didn’t look for it.

I wish my stupid brain would match my heart.

I love Leah with every fiber of who I am.

She has a place within my soul I never knew existed.

Why does my mind keep bringing me to a place where Down syndrome matters?

Why does it keep looking for the characteristics?

Why does it focus on the things which make me sad?

Oh well.



On a lighter note…

Now, Leah won’t stop saying, “HI!”

It is so stinkin’ cute!

She knows it makes us happy when she does it, so she says hi about 1000 times a minute!



She was fitted for her orthotics yesterday...

I hope she doesn’t hate them.

Now maybe I can buy shoes that are out of the infant sizes, though.

It’s funny, Leah has the smallest feet ever and we just bought Emmanuel size 11 men's football cleats!

He’s 10!



Leah’s physical therapist was also impressed with how well she is standing now...

After practice, she even tried walking from the coffee table to the couch!

She didn’t quite make it, but it was great attempt, that’s for sure.



We are also working on getting her to put things in...

She can take things out very well, but not-so-much put them back in.

Last night, she was a “putting-in” pro!

Leah absolutely LOVES praise and to be able to clap for herself, so whenever she masters a new skill, it’s a party in here.

I think that’s why she does it.

She’s a party girl, just like her mommy! :)

Hmmm...

Leah is starting to walk around the table.

A little.

She says, “HI!”

She does it quite often when a new person walks into the room, so I even think she knows what hi means.

She can also say, “Hey!” “Dada,” “Up,” “Baba,” “Mama,”and some other babbles, with lots of new long- vowel sounds.

She signs, Dada, Milk, Up, Dog…

We are working on more.

Is there an end to this kid’s ability to amaze?

I saw a girl in the grocery store the other day who was about 12-13 and had Down syndrome.

I was very happy and sad to meet her.

I was happy because I am always happy to meet new friends who share Down syndrome.

I was a little sad because I don’t want my sweet Leah to be like her.

I can’t picture it.

I know this may make me sound bad, but it’s the truth.

Even though this little girl was super cute and happy, I don’t want Leah to be recognized immediately because of her Down syndrome characteristics.

I want her to be higher functioning then this girl seemed to be.

It was hard to see this girl and think that some day someone will feel as bad for Leah, as I did for her.

I keep hoping Leah progresses as she has been.

I hope Leah will be THE one who will change the view of Down syndrome.

Maybe she can be a teacher.

Maybe she can be a physical therapist.

Maybe she will be a mother.

Maybe she won’t have people feel sorry for her.

Sarah keeps saying, “I don’t think Leah is a Down syndrome baby.”

I tell her there were tests Leah had to make sure she had Down syndrome, but it’s ok because she is just a baby anyway. The test doesn’t really mean much.

Secretly, I wish Sarah was right.

I wish the doctors’ tests were wrong.

But I don’t want to change Leah.

Because she is one of the 5 most amazing kids in the world!

Why would I want to change this miracle baby?

So, why do I still wish I could change her diagnosis?