When I reflect on my current life, so much of what I do, how I see the world, is based on my little Arabella. She is in so many ways my reference point.
Arabella burst into the picture on September 11, 2001. With her birth, I became a mom… something I had wanted my entire life. And in a moment, my heart was tied to that girl.
The first night of her life is so special to me… like a gift from God. For Arabella was born with a congenital heart defect and spent the 2nd through 18th nights of her life in the NICU of Texas Children’s Hospital.
But not the first night. That first night, she and I were alone in a hospital room, with me learning to be her mother. I remember moving her in and out of the bassinet each time I needed to go to the restroom… and then back into bed with me as soon as I got back.
She wasn’t demanding this – she didn’t cry at all.
But I couldn’t resist. I wanted her near me.
And I pretty much laid awake all night, so that the nurses wouldn’t check on me and suggest she go to the nursery.
And in retrospect, I think that night helped me have hope and connection through the next 3 weeks. I knew that I could be her mom and that we would eventually get to go home and be a family.
Arabella was a spectacularly beautiful baby (after the first week or so). This turns out to be common among babies with Down syndrome. They have very sweet, well-proportioned faces, not large unbalanced heads like typically-developing babies. Maybe this is a part of God’s plan to make sure we (parents of children with DS) become extra attached to our children.
Arabella had a rough, rough 1st year – 3 surgeries, a feeding tube, etc. – but those are such distance memories. Like the 1st year of a marriage, all I remember is that it wasn’t perfect, but I can’t really remember why…
As Arabella grew, she began to show a special ability to touch certain people. Not everyone. Not the normal crowd. But the lonely, the person on the fringe who it’s asking for attention. It reminds me so much of Jesus.
Now Arabella is 7 yrs old. She has spent 6 safe, to-easily-taken-for-granted years at a private school just for kids with Down syndrome and their siblings. And she graduated.
Now my real job has begun:
To present Arabella to the world and help them to perceive her beauty.
This is much more emotionally straining than I anticipated. I am a lot more sensitive than I thought I would be.
I want to catalog my journey through this here.
So, the starting point is Fall 2008… I didn’t enroll Arabella in school after she graduated from Rise… I felt like the Lord told me to homeschool her, but since He did not provide a way for me to quit my job, I feel like I was only suppose to do this to learn about the next step: helping a school educate Arabella.
I have learned a lot this fall:
1. I can’t get enough repetition in since I only get to do school with her Monday & Friday… and she needs more, not less, repetition of each concept than a typical kid.
2. She is ready for bigger concepts than I thought. Through testing/assessments, I have been told that she is functioning/learning at a 4 yr old level (she was 7 yrs old on 9/11/08)… but she is learning pretty well the same concepts Holden (my 5 yr old Kindergartener) is learning. She is not retaining them as easily… which makes #2 more important.
So, I went to the public elementary that Holden goes to at the end of our street, and have had 2 assessments with Arabella.