Life with Isabelle

LifewithIsabelle

When Isabelle June Bailey was born 17 years ago the doctor said, “It’s a girl.” The nurse said, “Oh, she’s beautiful.”

“Is everything alright, honey?” I asked my husband, Bram.

“Everything’s fine.”

But I knew everything wasn’t fine. I had taken the “what to expect” tour of the hospital, and I knew there were too many people in the room.

Within 15 minutes of Isabelle’s arrival, the doctor was standing by the bed saying, “She may be a beautiful little girl, but she has Down syndrome.”

Baby IsabelleThe nurse watched the doctor leave the room and then came over and said, “She has Down syndrome, but she’s a beautiful little girl.”

The nurse, who had worked with children with Down syndrome in high school, gave me her home phone number in case I had questions or just needed to cry.

I said, “I don’t think it was a coincidence that we got you.” She looked both ways to be sure nobody else could hear her. “Neither do I.” God knew we needed her.

These were my first three lessons in challenging this particular challenge: First, when people aren’t sure what to say, they can say hurtful things. Second, your perspective makes all the difference. Third, God was already with us on this unexpected journey.

We knew what people with Down syndrome tended to look like, and we knew it meant cognitive disability, but we didn’t know anything else. I flipped through the packet of “helpful” information to uncover pictures of newborns with feeding tubes and a chart that predicted a life expectancy chart of only 55 years old. I read that Down syndrome, or Trisomy 21 (three #21 chromosomes instead of two), is the most common genetic abnormality. One in every 750 children has Down syndrome. I read about poor muscle tone, loose joints, weak reflexes, a depressed immune system, heart issues, leukemia, epilepsy, vision, hearing, thyroid and skin problems and early onset Alzheimer’s. It was too much information. I just wanted to hold my baby.

That first night I wondered what the future would be like. Somehow I slept, and I had the most normal dream I have ever had. In it Isabelle grew up. There were birthday parties, Christmases, summers at the beach and fall days running through leaves in the park. She grew up surrounded by family and friends. When I woke up the next morning, I knew the dream was God’s way of saying “I’ve got this. It’s going to be okay.” Since then, every once in a while I find myself in one of those extraordinarily ordinary moments straight out of the dream. I remember that, as Julian of Norwich said, “All shall be well, and all shall be well and all manner of thing shall be well.”

I knew the dream was God’s way of saying “I’ve got this. It’s going to be okay.” Since then, every once in a while I find myself in one of those extraordinarily ordinary moments straight out of the dream. I remember that, as Julian of Norwich said, “All shall be well, and all shall be well and all manner of thing shall be well.”

The next morning the geneticist sat down with us, showed us the test that proved the diagnosis and tried to explain what it meant. “She will always need someone,” he said. “How is that so different from the rest of us?” I thought.

“She will lack judgment. She might have all the right information but still make the wrong decision. Again I thought, “How is that so different from the rest of us?” Then the doctor said some of the most helpful words we’d heard: “She’s more like you than not like you. She needs what every child needs. Take her home and love her.”

We did.

Isabelle and FamilyFor a long time I would say, “She has Down syndrome” out loud and finish the sentence in my head with “but not like other people.” It took me a long time to be able to say “She has Down syndrome.” Period. Isabelle also happens to have verbal apraxia. (which means there’s a disconnect between her brain and her mouth.) We are a family of storytellers. She is determined to have her turn. So a conversation with Isabelle is a lot like a word puzzle accompanied by charades.

How has God helped us?

He made me pretty good at word puzzles and charades.

He gave me a song.

“Because He lives, I can face tomorrow.
Because He lives, all fear is gone.
Because I know, I know, He holds the future and life is worth the living. Just because He lives.”

He gave us the essay, “Welcome to Holland,” by Emily Perl Kingsley, on what it’s like to have a child with a disability. It reminds us to celebrate what Isabelle can do instead of focusing on what she can’t.

He gave us Scripture. Second Chronicles 20:15, 17b (KJV) says: “Be not afraid nor dismayed by reason of this great multitude; for the battle is not yours but God’s. Go out tomorrow against them: for the Lord will be with you.” Having a special needs child means fighting battles of all kinds daily. The “multitude” keeps changing, but the battles keep coming. Knowing the battle is God’s helps us to face it again tomorrow.

He gave us a faith community at our Salvation Army corps that appreciates Isabelle when she dances during praise and worship, when she interacts with the preacher, when she goes to the mercy seat every week to pray for the Jonas Brothers and One Direction, and when she takes her imaginary friends to the mercy seat to pray with them.

He brought others to come alongside us. A family, immediate and extended, to embrace Isabelle and uphold us. One of our blessings is Anne Lipnick, my special education “maven” (a Yiddish word that means “she understands”). Everything I know about special education somehow can be traced back to her. Resurrection Children’s Center, an inclusive preschool, saw Isabelle as a gift to be unwrapped, not a problem to be solved. Therapists worked together when we couldn’t afford all the recommended therapies. Teachers rise to the challenge that is Isabelle. Friends and fellow travelers on this journey generously share their lives with us.

He gives laughter, love, joy and peace in the midst. What do I want people to know?

A rabbi was asked, “What is the appropriate blessing for someone who has a baby with a disability?” His answer: “Everyone wants a Mazel Tov”—a Yiddish phrase meaning, “Good has happened to you.”

There are a few questions I’d like you not to ask:

  • “Is she a Down’s child?” She has Down syndrome. She is not Down syndrome. I hope I don’t even need to ask you not to use the “R” word.
  • “How old were you when you had her?” That really means, “Was it your fault?” The answer is, “No, it just happens.”
  • “How far is she going to develop?” Can you answer that for your children?

IsabellePray for me? Yes.

Feel sorry for me? No.

If we’d had Isabelle ten years earlier, we might have been told to put her in an institution, since the prevailing wisdom was that she would never form attachments or make any contribution to the world. Today, people with Down syndrome are actors and spokespeople and dancers and potters and…

Isabelle’s name means benevolent heart consecrated to God. She calls her Bible “my church book. It says God loves me.” She will not be ignored. She is funny, loving, graceful, solid, stubborn, determined, forgiving, able to push her brothers’ buttons, frequently frustrated and embarrassed by her mother and a big fan of One Direction. She is a loyal friend, swims like a mermaid, was born to dance and believes with all her heart that cheese and ketchup make everything taste better. She makes everyone work harder than they ever have before. And, she has an amazing way of stealing your heart.

Mostly I want people to know that we are richly blessed—as a family and as individuals. We are far better people now than we ever would have been had we not been gifted with the beautiful Isabelle June.

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By Carolyn J. R. Bailey