Mama Bear

Today, we went to the developmental clinic for our yearly check-up.

Sarah was right by our side, helping in every way she could.

So, we began our appointment by being evaluated by the “educational specialist.”

She started our session by asking a bunch of medical questions as well as inquiring about what developmental milestones Leah has reached or was working on.

In the meantime, Leah was happily playing with blocks with her big sissy.

She was stacking cubes (2 at a time) and knocking them down, as well as taking the blocks out and putting them back in the metal container they came in.

Then, the educator gave Leah a peg board in which Leah took out each peg as well as put them back in.

Next, Leah was to uncover the hidden object, which she did with no problem.

Finally, Leah had to pull a toy on a string to her, something she’s been doing since about 6 months.

Leah performed perfectly on every test she was given. There was not one thing that she DIDN’T do.

So why is it then that they have her at 12.3 months cognitively?

This clinic really ticked me off today!

Then the developmental nurse practitioner came in to do a minor exam on Leah.

As soon as Leah saw her, she smiled, waved and said, “HI!”

The NP didn’t even notice.

First, she gave me the third degree about why I didn’t take Leah for an ABR after it was recommended by the audiologist.

I explained that Leah has a tough time waking up after sedation and I didn’t want to put her “under” unless it was absolutely necessary.

I also reiterated the fact that neither her teacher, her speech therapist, nor I were concerned about her hearing (something I explained to the educator just minutes before). There is not a sound that Leah hasn’t heard when she was focused. If she is playing on the other hand, sometimes she just isn’t paying attention and won’t “hear,” but that’s part of being 1 and ½.

Then the NP begins telling me about other types of sedation that might work.

I reply, “I am not concerned about her hearing.”

She says, “Well kids with Down syndrome tend to have hearing loss.”

Excuse my language but, no shit Sherlock.

That’s why I insisted on tubes at 6 months so that all of the fluid that was stuck in her little ears could move to its right place and no damage would occur.

Next, she tells me I need to watch her weight.

Leah falls on the 90th percentile for weight, 75th percentile for height, and 98th percentile for head circumference on the Down syndrome growth charts. I guess that little weight fluxuation might be cause for concern if those weren’t her statistics since BIRTH.

Read her damn chart lady.

Besides, maybe that big ol’ head of hers has something to do with her weight! ;)

Then she asks about her recent thyroid screen. She says she doesn’t have it.

I said that Leah had her thyroid screened in September and that the results were normal.

She said, “Well I don’t have the results, where were they done?”

I told her that her pediatrician ordered them and should have the results but they were normal.

Her reply? “Well I don’t have them and if they didn’t come back normal then we would have to retest immediately.”

I rolled my eyes (Sarah scolded me for that ;)) then I said, “They were NORMAL!”

She finally tracks down the results and sees that they are indeed normal and goes on to tell me that she would need to be retested again in July… thanks again Sherlock.

It just ticks me off how these “specialists” act.

They are looking for the delay.

They are looking for the complications.

They are looking for every negative aspect of Down syndrome.

They over exaggerate delay and don’t listen to real-life situations.

I understand that it’s their job to look for things that a parent or typical
pediatrician might miss, that’s why they’re there.

But what if there’s nothing to miss?

What if everything is normal?

According to Leah’s therapists she still falls “within normal limits” in every developmental area except physically (lazy bones still won’t walk).

But according to the specialists today, her physical ability is one of her strongest attributes.

Obviously I'm on top of her health, I just told her about Leah's appointments with the cardiologist, ent, surgeon, and pediatrition we've had recently.

But she still questioned my judgement and knowledge.

I think I’m done with this clinic.

I’ll be looking else where for the services that Leah deserves.

And, maybe I might just have a little talk about all of this with one of my friends, who happens to be their boss! ;)

Things definitely need to change in that place.

Yep, call me “Mama Bear” today!

My Beauty

I have always thought of Leah as a beautiful child.

Her eyes are a breath-taking shade of blue and those little Bruschfield spots she has, look like sparkling diamonds in them.

Her smile is contagious.

Her face is precious.

Her ears are petite and her earrings show off the perfect shape of her jaw.

She has the cutest little feet. Her middle toes are smaller then the toes on either side, and they are chubby little things that you can’t help but to nibble on.

I don’t know how to say what I’m about to say without it coming out wrong, so I’m just going to say it.

I have always thought of Leah as a beautiful child, even with Down syndrome.

Since those sweet first glimpses of my beauty, I have been able to see Down syndrome and quite frankly, I didn’t always welcome that sight.

It has been a constant reminder of her “differences” and disability.

It is tough to see people trying to figure out if she has it or not.

I don’t like the stares.

I just want my baby to be “normal” and her face is a constant reminder that she isn’t (not that any of us are, but that’s a whole other blog post).

Until the other day.

The other day in the van, I saw one of the most breath-taking children I have ever seen.

For the first time, I saw Leah as a beautiful child, INCLUDING Down syndrome, not “even with it.”

I saw a gorgeous face and I actually welcomed the Down syndrome characteristics.

They added to my sense of being awe-struck.

Once, Steven and I were laying in bed staring at Leah and I said, “I think Heavenly Father sent her with Down syndrome because if He didn't, she would be so beautiful that Satan would work REALLY hard on her and others around her.”

Does that make sense?

Now, I think Heavenly Father sent her with Down syndrome to show us the true view of beauty.

How He sees beauty.

I think the other day I saw a glimpse of what He sees.

I saw a beauty unlike I have ever seen before.

I could feel my spirit rejoice in her sight.

It is really hard to explain.

Long story short, Leah is beautiful...

...And I see it more every day.