Category Archives: Arabella

God is good.

This week, Arabella, my first born child, has spent the week in Texas Children’s Hospital (TCH). Our bulldog’s crazy sticking out tooth went into her finger, causing an infection.20130221-141608.jpg20130221-141625.jpg

Hospital-time leads to reflection.

  • For Arabella specifically, TCH is the place she came on her second day outside my womb, and remained for 25 days trying to learn to eat while her heart ran a marathon.
    Then she returned for a feeding tube to be placed (and replaced) at 3 months old.
    She had her heart repaired by the cardiovascular surgeons there at 6 months old.

    And here she is, 11 yrs old, and healthy for 9 yrs!
    That’s something to celebrate!

  • Regarding healthcare: this finger thing didn’t look like a big deal… Redness, puffiness, but not a lot else. But the doctors at both our Pediatricians office & in the ER know that hands can progress in bad ways, so they are fighting vigorously, aggressively, for the health of Arabella’s hand.
    That’s something to appreciate!
  • Regarding life: while it might seem inconvenient to sleep away from home, it’s a blessing to have 1-on-1 time with my daughter. Thankfully, my job is mega-flexible, my husband is super helpful, and my sons are compassionate & understanding.
    Those are all blessings.

It seems like “bumps” in life are good times to pay attention, be more alert to how life is really going.

I can see God’s blessings raining down on me!

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How about you?

My prenatal experience with Arabella

Recently, I had the opportunity to correspond with a lady who is pregnant with a child with Down syndrome, trying to make her choice to parent or abort.

I realized I haven’t written about my experience with prenatal information.

Here’s what I shared with this mom:

On my 1st ultrasound at 8 weeks, I had low amniotic fluid. So they did another ultrasound at 11 weeks. At that ultrasound, they measured for a LONG TIME , then made me wait to see the doctor.
Since Joel & I both needed to get back to work, & the ultrasound tech gave no indication of a problem, Joel headed down to retrieve our car.
The OB said the baby had a nucle thickening. This could signal a trisomy, the mildest of which was Trisomy 21, Down syndrome. She said that some trisomies are not viable with life especially on genes with lower numbers, so the baby might die before she was born. Or I might just want to terminate.
Then she left the room.
What I heard was, “Your baby is probably as good as dead.”
The doctor left me alone in the room for 20 mins while they worked in a referral to a high risk doctor.
I called Joel back from the parking lot, & tried to tell him what they said.

We left there in a fog. We didn’t go back to work. We went to separate rooms. I crawled under the covers in a dark room & mourned the loss of my baby.

Then Joel came in & announced my tummy with oil, praying for God’s hand to be on our child.

So 3 weeks later, I saw the meanest high risk doctor (perinatologist), who banged the ultrasound probe on my bladder & said, “they didn’t know what they were looking at. There’s no nucle thickening.”

We did 2 more high risk ultrasound with another high risk doctor.
We changed to a midwife who understood we didn’t want a test that would endanger our baby, & if something was wrong we wanted to be in a peaceful setting during the birth & death.
We named her as soon as we found out her gender, so we could love a baby girl vs an “it”.

And only once that I can remember, Joel said, “Do you think about if the baby will be born different?”

Sidenote: the mean doctor was stupid! Between 1st trimester & 2nd trimester, nucle thickenings dissolve – so she discounted the sign, I think because I was only 24. It doesn’t matter cuz the other ultrasounds were still checking her heart & organs.

All this happened, even with how God had prepared me for being Arabella’s mom. The 3 summers prior to her birth, I was a volunteer then counselor then director at the most amazing camp in the world, Camp Barnabas in Missouri.
My 2nd summer, I had 1 week with 8-11 yr old intellectually delayed girls, most of which had Down syndrome. They were my favorite people I had ever met. I also had a week with an adult camper with Down syndrome who I fell in love with.
In my prayers, I said to God, “if you have a spare baby with Down syndrome, I want it!”

I don’t believe I told God what to do. I believe this was a fulfillment of Psalm 37:4 “Take delight in the Lord,and he will give you the desires of your heart.”
He gave me desires that matches the life he had in store for me.

So when those ultrasounds were read, Down syndrome wasn’t my fear. My fear was the unknown, the other things the doctor had said (and not explained!)

While the boys are away… Homemade chocolate donuts

All our boys left by 8am, so when Arabella woke up at 9am, I was ready for girl time.

She requested chocolate donuts, so we hopped on the web to find a recipe.

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Yum!

Experience changes perspective

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This is Arabella & her best friend Vanessa. They met in kindergarten in 2008-2009.

Everyday, Arabella would talk about Vanessa, and at each school party, they would beg to get together outside school.

When Arabella is with Vanessa, she doesn’t have special needs. She is a peer. Vanessa’s high expectations are better than any therapy. Arabella’s self-care skills improve leaps & bounds. It is a beautiful thing to watch.

Back in 2009, Vanessa asked me if Holden (my son without Down syndrome) was adopted….because he looked different from Arabella & Darin (Darin is adopted). We explained Down syndrome and she said she knew, her mom told her, but you could tell it didn’t matter to her.

Vanessa also told me that at Kindergarten Graduation, people thought she & Arabella were twins.

Four years have passed. Arabella and Vanessa go to different schools, and live 30 mins apart. Sometimes I worry Vanessa will outgrow her friendship with Arabella, while Arabella still adores her.

But that’s not my choice. So when Arabella asks (or when she asks everyday), I eventually initiate with Vanessa’s mom, to arrange a playdate. It’s up to Vanessa to determine if she’s outgrown Arabella.

This weekend, Vanessa came to spend the night…and the bond was as awesome as ever. Vanessa wrote “Arabella is my best friend” on a coloring page & read the things Arabella couldn’t understand to her. And they made Camp Rock reference & talked about Justin Beiber.

It brought joy to Arabella. It brought joy to me.

As the weekend ended, Vanessa said, “Arabella wouldn’t like to go to my school.”
I said, “Why?”
She said, “They have a separate room for them. And they are very mean to them. They yell at them.”

I knew who she meant. I knew she had encountered the “other” view of kids like Arabella.

So, I told her that most schools had those rooms. But that I didn’t let them put Arabella in there…
That I fought for her to be in a class with kids like Vanessa.

And I was filled with hope.
Because Vanessa will never be a mom, a teacher, an aunt, a friend who ignores the oppression of a person with Down syndrome.

She has truly known Arabella as a friend with Down syndrome.

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My guest post @ The Leaky Boob

I wrote a post on my breastfeeding experience for a friend’s blog, The Leaky Boob.

Vacation & parenting

Last summer, Holden & I tagged along on Jessica’s family’s yearly trip to Camp Riverview on the Frio River. It was a blast. Holden is a little river rat and a flexible, laidback camper. I promised him we would be back!

After a busy June & July, our summer winded down in August. And my birthday was the 3rd & Holden’s is the 23rd…
So off we go to celebrate with our freshly-labeled ‘2nd annual Mother-Son Frio trip’. We are going back to Camp Riverview, just down the road from Garner State Park. We are tent camping with just the basics. We are gonna shop together on the way to pick out our meal. We brought our bikes so when we aren’t floating we can explore. We are staying 3 days-2 nights. Can you tell I’m excited?

The bonus: on the way, we are going to the original Schlitterbahn in New Braunfels with Jessica, Jimmy and Marian, Jimmy’s mom!

The only drawback: Arabella heard the planning chatter, and started asking to come. I really felt sad, and made plans for a mini-trip to Galveston for her birthday.
I know I have done lots of one-on-one with her… And I really want to set apart special time with each kid… But it’s hard to not feel like you’re excluding the others.

Well, off to Schlitterbahn!

Educating Arabella… God is good, all the time

Last summer, after I had made plans to homeschool Arabella, we moved to Deer Park.
We moved to Deer Park since we had planted The Basilica Community in the Pasadena/Deer Park area in 2006. We spent 2 years commuting to spend time with our churchfolk, and finally realized that we needed to be “in the midst” of our community. So, we tried to sell, and eventually rented, our little bungalow in downtown Houston, and found a rent house in Deer Park.
Of course, God found the rent house… Joel just drove the street to see the sign. It had a playhouse/swingset already, 3 bedrooms, 2 livingrooms and hardwoods. I still love it – a whole year later.
And at the end of our 1-block street is San Jacinto Elementary.
I didn’t know anything about San Jacinto Elementary. But the 2nd week of homeschooling Holden, I enrolled him in school… cuz I was not keeping up with his need for learning, and my full-time job. And I learned that SJE was a really organized, nice school.
What I still didn’t know was this: They have kids with Down syndrome in 1st, 2nd, 4th, and 5th grade. Down syndrome is their most well know disability.
But God knew this.
So, in November, Arabella started assessments, and I prepared for an ARD (the committee meeting to plan her “specialized” curriculum). I have heard horror stories about ARDS for 7 years, so I was nervous and took my husband, Arabella’s former principal, and my mom as back up.
But the committee agreed to my ideas. Arabella, already 7 yrs old (although she was 6 yrs on Sept 1) was allowed to spend the day in a Kindergarten class.
Arabella spent this spring in Kindergarten, and gained alot of ground. She was finally able to retain her alphabet and match numbers to items when counting.

So, I went back to ARD in May with hope. I decided, based on wise words from another parent, to think outside the box that Arabella’s peers have been educated in.
You see, as far as I know, most of Arabella’s 7 yr old DS friends went into 1st grade last year.
And this year they will be in 2nd grade. Regardless if they can read, or not.
This did not make sense to me. If Arabella cannot read in a class that is reading information to do their assignments, she will have 2 choices:
1. Be a distraction to the other kids.
2. Be quiet and color while other kids do their work – then do her work in another setting (ie. pull out classroom/resources).
So, I decided to ask for Arabella to be placed in the classroom where all the kids are learning to read – Kindergarten (again).

While the ARD committee was surprised, and had to call a recess so that the principal could attend, they agreed that this made sense.

I feel very good about this! Fortunately (or thankfully by God’s planning), Arabella is only the size of a Kindergartener, so she blends in great.
Now I just have to minimize her telling everyone that on September 11 she will be 8 yrs old!