Jonah wasn’t her first. Seven years earlier, Joyce Israel had Noah, a bright eyed intense baby boy. “He popped out of the womb and I was in love. I never knew you could love that intensely.” Those early years with Noah were magical “He had to learn everything, and do everything ahead of schedule. He was very, very bright. He was all right there.”
Noah Israel today
Living in Australia for her husband Rick’s work, Joyce became pregnant again. Everything went smoothly, with none of the first baby anxieties Joyce had with Noah. “I had never been so fit, it was all fabulous. And then I had a baby and everything seemed fine, but Jonah never really responded to me the way Noah did.”
All children are different, the doctor reassured her. Don’t expect another Noah. “So, I thought, all right, he’s different – fine. And then three months down the road he starts having miniature seizures.
“At this point I realize something’s wrong – I mean, I’m a fairly astute person,” says Joyce rolling her eyes upward.
She and I are satisfying our mutual need for rich coffee after our morning workouts, Joyce looking much better put together than I. Her time in the locker room produced a matching white bag and trench coat while I barely managed a clean pair of yoga pants. We both arrived at the café a couple minutes before our appointment time. “I’m ridiculously punctual,” says Joyce, as if an apology is needed.
She saw the pediatrician immediately who said Jonah needed to see the neurologist. It was the Friday before Joyce’s 41st birthday. “So the doctor called to make an appointment and he hangs up and said, sorry, no one can see you for another month, and I said, yeah right. I get on the phone right there in his office and I say, someone is going to see me, MONDAY.”
Joyce and Rick spent an anxious weekend waiting with their three month-old for that Monday appointment. After preliminary tests, the neurologist insisted that Jonah stay overnight in the hospital. “They’re doing all sorts of tests on my little boy – I have to hold him while they do this.” Joyce holds her arms as if they still have her baby within them. “They’re monitoring his seizure activity, they had to do a CAT scan on his brain. And that’s when we get the results. Neurologists – they so lack in the personality department. He tells us our kid has a condition called lissencephaly. And he tells us Jonah has a particularly severe form -- he has agyria. – which means he has no gyri.”
Lissencephaly is caused by an arrest in development of the fetal brain during early pregnancy. The cerebral cortex, the top layer of the brain controlling higher thought processes, does not develop the normal indentations or valleys in the cortex, and gyri, the ridges or convolutions seen on the surface of the cortex. Instead, the cortex in a person with lissencephaly is thickened and smooth with disorganized neurons that have not migrated to their proper places.
“And then he tells us outright, Jonah’s got two, maybe four years to live. He’ll be vegetative. He won’t eat orally. He might not ever smile. And they want us to spend another night in the hospital and we’re like, ‘why’? We’ll just take our kid home and let him die,” Joyce voice trails off, remembering the feeling of futility.
While they were still in the hospital, in a room along with several other kids, Joyce remembers seeing another mother tend to her child. “She was so beautifully dressed. She had a 13 or 14 year-old boy, and the nurse was about to start a tube feeding on him and she said, ‘no no no, I’ll do that.’ She was so efficient, and I thought to myself, that’s me! That’s my picture right there! I sure hope I have the nice clothes too! It was like watching an out of body experience. I couldn’t fathom any of this.
“Sadly enough I spent the first year and a half of my kid’s life waiting for him to die. Maybe wishing for him to die,” Joyce admits. “I don’t know, maybe I wanted to get on with my life if he wasn’t going to stick around.
“I couldn’t get invested emotionally. It’s really sad for a mother not to bond with her child, and I so regret those years when I see who Jonah is to me now.”
Amazingly, today Jonah Israel is almost ten years old, smiling, eyes twinkling from his wheelchair. He’s beaten the odds, outlived the predications. And Joyce has learned to love him unconditionally, counting each day a blessing while remaining realistic about how many days may remain.
She attributes her transformation in large measure to the people she brought into her family circle to help. Topping the list is Jonah’s inspirational pre-school teacher at the Boyer Children’s Clinic in Seattle, Mary Ellen Buchanan – “now that’s who you should interview next”, Joyce tells me, underscoring this with a fork pointed in my direction.
“I remember, we walked into her classroom and she held up these two objects in front of Jonah and she said brightly, ‘Jonah, which of these do you like, do you like the blue (pointing to one hand) or the green (pointing to the other)?’ And I thought, lady, what, are you on drugs? My kid is a vegetable, what are you doing? And do you know, within six months, Jonah was turning his head, making a decision between the blue and the green? She gave me hope. This woman changed my attitude about my child in a huge way. I came to understand that there was somebody home. And gradually, gradually, I learned how to love him.”
It was Mary Ellen who encouraged Joyce to have Jonah tested and fitted for glasses. “Glasses? I don’t know how they can figure out a prescription (since Jonah can’t read an eye chart), but they do, and all of a sudden he’s sleeping less during the day, he’s focused more – I can see that his world is opening up.”
Joyce believes so strongly in the Boyer Children’s Clinic that she sat on their Board for five years.
“So, at this point, I’m starting to see that I have a little person here. I’m starting to see – I know how to keep this child alive.” Recognizing that Jonah is not processing food well, Joyce starts him on a high fiber, low-fat diet. He can’t eat solid food so she grinds his breakfasts of bran cereal, lunches of salad with avocado, and dinners of tofu and vegetables. He’s no longer constipated, which means his body can absorb his medications. She has him working with one of their long-time helpers doing yoga, which she describes as miraculous, helping Jonah avoid hip surgery, a common occurrence among children with lissencephaly.
Monday through Friday he’s at Lowell Elementary, a Seattle public school that houses the city’s Low Incident Special Education program, teaching children in specialized, self-contained special ed classes. In addition to his physical, occupational and speech therapy, he spends time in a general education classroom that pairs with Jonah’s class for activities each week.
“For me, school for Jonah is primarily social. I mean, he’s never going to read, he’s never going to write, whether or not he’ll ever use one of those fancy- schmancy boards to communicate I don’t know. I’ve never had lofty goals for my kid other than that he should be happy. And being around other children makes him INCREDIBLY happy.”
And this year, school has brought what all parents hope for their children – a friend. “This is the first time this has ever happened. This little girl put a note in his lunch box asking if they could have a play date together! So I’ve taken them to movies, the Science Center, the Aquarium. When we go to the museums, she’s busy looking at the exhibits and he’s looking at her. It’s all about her. I mean, you even mention Dylan’s name to Jonah and you can see him light up. She even sits with him at lunch at school. This little girl loves Jonah. It’s a miracle. And they’re perfect for each other because she can’t stop talking and he can’t talk at all!”
Jonah Israel enjoying an outing with friend, Dylan
Joyce describes a time when she set Jonah up in his room so Dylan could read to him. “When I returned, she had him cuddled in her arms. It was too sweet,” she says the emotion of that moment still very strong.
Jonah has many others in his life who adore him. There’s Rick, whose love for Jonah is returned tenfold. “He still loves his dad more. Which pisses off me, and all the other girls who help care for Jonah. Here I am, diapering him, getting him to go to the bathroom, grinding his food, giving him his meds, everything he needs. Dad comes home, and boom, that’s it. Whatever,” she says waving it all away with a smile on her face.
“Look, I’m mostly function. He expects me to feed him. I’m the only one who can help him have a bowel movement in the toilet. He knows I’ll be the one to come in the middle of the night when he calls out.”
For almost 10 years now Joyce has been getting up with Jonah one, maybe three times a night. “I’m like an Alzheimer’s patient during the day because my memory function is impaired due to lack of sleep.” Despite this, she doesn’t nap. “I don’t want to. I want to live my life. Instead, I’ve got this,” she says, lifting the coffee cup for a long sip.
And then there are Joyce’s parents, who “are incredible with Jonah – they just love him so much.”
That wasn’t necessarily a sure thing. “I never would have suspected my mom would be ok with this kind of situation because, you know, in her mind, people who aren’t perfect get exterminated.”
Both of Joyce’s parents are Holocaust survivors, her mother having been in Auschwitz for more than a year. “Somehow she managed to survive that. She is a very, very strong woman.” Joyce acknowledges some of that strength got passed down to her.
When I asked how much of a presence her mother’s concentration camp memories played in Joyce’s childhood, she answers that rather than being overt, it was “more like the Seinfeld, yada, yada, yada, like, ‘When I was young I got into a fight with an SS officer and yada yada yada and now I can’t see out of my left eye.’ And six years later you find out she was pistol whipped.”
Despite her horrific past, Joyce’s mother helped set a standard for being a mother to Jonah. “She is the epitome of unconditional love. There is nobody like this in the universe, who would lay down herself gladly for anything.
“To need to learn to love your own child -- I just felt like such a terrible mom. Now I think he’s fantastic – he’s such a sweet little guy, so cheerful. It’s impossible not to be happy when you’re around him because, oh my God!, he just so enjoys life. You can wallow in your pity party as much as you want, but this kid, he’s not. It forces you to look at things differently.”
That’s not to say that it isn’t hard or that every day is a happy one. The pain gets less and less as the years go on “since I’ve learned to love Jonah for who he is. Certainly initially, yeah. I’d hear a curly haired boy calling his dad and I’d break down in the grocery store. There are things you want for your child – I have very simple wants now. If I could just hear my kid say, ‘mom’, I would be happy. But I don’t expect to, and you know what, that’s ok.
- Janet Pelz
Rick and Joyce Israel
Joyce’s not-so secrets for How She Does It:
- Red wine, coffee, yoga, new shoes, and date night every Saturday.
- And if I’m having a pity party, a sad movie really helps. It helps to have someone else to feel sad for.
- I hire help. I outsource! If I had been the only caregiver for Jonah all these years he would be vegetative.
- I am incredibly fortunate. There seems to be a big correlation between disability and poverty and I don’t have to worry about that. I can get extra help, I can buy a necessary piece of equipment. And here’s the irony – I’ve never been a person who needed a whole lot of money. It never appealed to me, but thank God that Rick has done so well in life because Jonah will always be taken care of, get medical care – that’s one big worry we can put to rest that many families can’t.
- Rick adores this child and is devoted to him – thank God our marriage is solid. I’ve been really blessed to have married such a wonderful man. The divorce rate for people with kids with disabilities is up around 75 – 80%! You add a big stresser like that, add the economic stress, if parents don’t agree – we don’t have any of that.
- Noah is a wonderful presence in her life, bright, personable, witty “he’s constantly cracking me up with his one-liners!”
- I’m pretty damn lucky. I feel so blessed.
What book has Joyce read recently?
- In the Time of Butterflies, by Julia Alvarez
Whom does Joyce want me to interview next?
- Mary Ellen Buchanan of the Boyer Children’s Clinic
Please DO interview Ms. Buchanan...sounds fascinating!
Posted by: B. Mortimer | 05/10/2010 at 09:01 AM
I love hearing from readers encouraging me whom to interview -- thanks so much for taking the time to write!
Posted by: Janet Pelz | 05/10/2010 at 11:02 AM
I am the parent of a former Boyer student and I have to say, I cried through this entire post. What a strong, wonderful, and inspiring woman Joyce is. My child's issues are much less severe and yet, I have many of the same struggles. To accept who he is in any given moment and not who he "should" be can be a big challenge. Thank you for this interview.
Posted by: Dana | 05/10/2010 at 01:55 PM
Dana: How wonderful that you found the story and were moved by it. I will make sure Joyce sees your words of support.
Posted by: Janet Pelz | 05/10/2010 at 03:32 PM
I have something to add. Proper kudos must be extended to Jonah's amazing caregiver of 8 years, Kathleen Boden. It is because of her yoga practice with Jonah 3 times weekly that he has been successful in delaying (hopefully preventing) his need for hip surgery. She is a second mom to my boy and most always introduces herself as such. The bond is very strong and I couldn't do it without her.
Joyce
Posted by: Joyce Israel | 05/10/2010 at 03:49 PM
I have read the story 6-7 times. Everytme I hold that tear that is ready to drop out of my eyes. I have myself worked with one amazing autistic boy and I absolutely loved it. I am looking at volunteer opportunites at Boyer. Rick and Joyce are amazingly full of compassion and love.
Posted by: Kanti Mani | 06/21/2010 at 08:17 PM