My rating: 5 out of 5 starsActors Marianne Leone (best known for her role on "The Sopranos") and Chris Cooper had a son, Jesse, who was born on October 15, 1987, at 30 weeks gestation, weighing 3.7 pounds. Our Chris was born 9 years later (at 24 weeks, weighing 1 pound, 6 ounces), and a great deal had changed in the field of neonatology during that intervening time. However, one of the major focuses during Chris' first week of life was still the question of whether he would have a brain bleed (the technical term is a cerebral hemorrhage). These are extremely common in preemies, especially micropreemies, and can predict the outcome of their NICU course and the rest of their lives. I remember the amazement of the medical staff that Chris did not have a brain bleed. (He did suffer cerebral edema and low flow to the brain a month later, but no brain bleed.) Leone's son Jesse had a Grade IV (the worst) brain bleed. As a result, he ended up with cerebral palsy and was a nonverbal quadriplegic. But what a life he lived!
Even though our preemies turned out to live very different lives, I could relate to so much of what Leone wrote about with Jesse...
- The indescribable day they were finally able to take Jesse home from the hospital...
- Fighting the advice of her mother, who scolded, "You can't hold him all day long" (about which she wrote "Yes, I could. Those months of heartbeat you missed out on would be supplied now")...not only did we hold Chris all day long, but we held our subsequent sons all day long as well...only another parent who has not been able to hold their child for 6 weeks could understand this...
- How she felt that her son belonged to the NICU staff, the social worker, the specialists who lacked any social skills...
- How desperately she wanted her son to be "normal" and avoid the need for "early intervention" (she used to chant a mantra of "noCPnoCPnoCPnoCP" until she realized it wasn't working)...
- How she chanted another mantra to herself with her long list of wishes: "let him thrive"...I used that mantra/prayer myself...
- How she hired her son's first caregiver not on the basis of her glorious references (which she never got around to checking...) but because the first thing she said upon seeing Jesse was "Oh! Isn't he gorgeous!"...I remember how grateful I was to people who told me that Chris was beautiful or cute, and how hurtful it was when they didn't say a thing or know how to respond...
- The terrible guilt she feels for not realizing what a truly awful environment he was in during his first year of "integrated" school, abused and neglected by the aide who was supposed to be helping him--and the first-grade teacher (I still feel guilt for not fighting against an unnecessary procedure to do an invasive exam on Chris when he was hospitalized at 1 year old)...
"This was the first time I had to be physically restrained from attacking one of your 'healers.'" (I felt this so many times!)I love the way she handled rude stares (by telling Jesse, loudly, "You're so handsome! People can't take their eyes off you!").
Leone's fight for her child's rights and dignity reminded me of the classic books Karen
and With Love from Karen
, written by her mother, Marie Killilea. (Karen was born prematurely and also has cerebral palsy, and her mother fought to keep her at home with her family, in spite of doctors advising her to institutionalize her daughter.)They had horrific, heart-breaking experiences with "early intervention" (or "early interference," as she calls it) and attempts to get Jesse into regular classrooms...he was treated as if he was mentally disabled, when his only disabilities were physical. Throughout it all, Leone was Jesse's greatest advocate. "The sheer bureaucratic obtuseness of the parade of bozos that had permanently entered our lives was the worst aspect of Jesse's handicaps." As if parents of a disabled child did not have enough fear and anxiety to bear, they also have to deal with daily fights just to get their child equal opportunities and respect.
Leone writes about her post-traumatic stress from growing up in a hellfire-and-brimstone Catholic environment. By her own admission, she embraces the smells and bells aspect (if it will give her hope to heal Jesse) but rejects the guilt, the hypocrisy, and the shame. (It's like people who are sick or whose family members are sick and don't necessarily pray for themselves, but accept the prayers of others.) I did not know that the root meaning of the word "heretic" is "able to choose," but I love that. That's how she feels about Catholicism...and how I too feel about Christianity. I can choose what I want to believe, not what a religious leader is telling me to believe...
I cried repeatedly throughout this book. When Jesse describes himself--by hitting the word on the computer repeatedly by using his eye to control the cursor--as "strong." When she takes him to hear Handel's Messiah when Jesse was three, and he began singing during the Hallelujah Chorus...and she realized she had to stop worrying about him all the time, so she could appreciate that moment in time when he was trying to sing. When reading the letter Jesse received from one of his teachers, or the love he experienced from his caregivers. At each poem of Jesse's I read (each chapter opened with one of his poems).
Jesse lived to be 17 years old. He had many close friends and people who loved him dearly. He got his ear pierced in the mall with his friends when he turned 16. He played video games, traveled, and loved to go on thrill rides. He wrote poetry, excelled in Latin, and was an honor student. He lived a very full life, surrounded by the love of his family and wise beyond his years. This was his first poem, at the age of ten:
On the inside, I walk
On the outside, I give
On the outside, I am mute
On the outside, I give
On the inside, I speak
On the inside, I walk
Every child deserves to be loved and cherished as much as Jesse was. Children with disabilities, especially, deserve this much love and affection. Jesse was blessed to be born into this family, to parents who were dedicated to helping him and advocating for him. It makes me sad to think about the children "dumped" into unhelpful learning environments or ignored by the "system" because they don't have parents who have the guts, passion, and strength to fight the good fight.
When I read these types of memoirs, I can't help but think how close we came to this type of parenting experience. We were exceptionally lucky that Chris avoided major disabilities. I am in awe of parents like Leone and her husband, and I am also in awe of Jesse's strength, confidence, and passion for living. His death was the world's loss.
