Knowing Jesse: Beautiful mother's tribute to her precious son

My rating: 5 out of 5 stars

 

If you read my last review, you'll know that I prefer happy endings to novels. With this memoir , I knew I wasn't going to get a happy ending. That's partly why it sat on my bookshelf for awhile before I could pick it up. In spite of the sad ending, I loved this book.

Actors 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)...

At one point, an arrogant neonatologist told them that they wanted to place a shunt in Jesse's brain "for prophylactic reasons" and because his "clinical course might be better" (even though he didn't have hydrocephalus)...and when she asked for the words in plain English, the doctor snapped "it's only a piece of plumbing!" What mom of a sick child could not relate to this statement:

"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.



This Lovely Life: Heartbreaking, beautiful memoir of a premature baby's life

This Lovely Life by Vicki Forman

My rating: 5 of 5 stars

First off, this book is not for everyone. And it's certainly not going to be five stars for everyone. But for a survivor of the NICU or PICU, a parent who has seen his or her child fighting for life, and a parent who's had to face down the medical establishment and sometimes win and sometimes lose, it's beautiful, a tear-jerker, and poignant. One reviewer commented that no one of child-bearing age should read this book. It could completely terrify prospective or new parents. But it all depends on one's perspective...and how one sees the world. As a mother of a 24-weeker myself and a NICU survivor, I found this book to be very touching, unflinchingly honest, and deeply bittersweet.

Vicki Forman is the mother of fraternal twins, Evan and Ellie. When she goes into labor around 23 or 24 weeks gestation, she knows all too well what their risks are. She asks that the babies be allowed to die. She didn't want any heroic measures to save their lives. Somewhere deep in her soul, she felt it wasn't worth the potential costs. But the doctors ignored her request and rescusitated the babies.

Ellie lived for 4 days, and Evan survived. But just barely. The twins' birth catapulted Vicki, her husband Cliff, and their daughter Josie, into the world of neonatal intensive care, and the complications that often ensue.

Evan was not one of the lucky micropreemies who escape with just a few minor disabilities. He went blind because of retinopathy of prematurity, had extreme feeding issues, and had a severe seizure disorder that most likely compromised his ability to develop "normally." He also had a serious heart condition.

I had discovered Forman's wonderful way with words through the online ezine, Literary Mama. I read everything she wrote. She wrote about loving Evan passionately, but being acutely conscious of how different he was from other children and what they have lost. I put off reading this book until I was ready, because I knew it would leave me raw...especially because Evan suddenly and unexpectedly died last year from an intestinal blockage, probably connected to his prematurity (scarring from a g-tube). This book does not have a traditional happy ending.

To my husband's chagrin, I dog-eared countless pages in this book to remember passages that resonated with me:

--The doctors often do not mention the lasting complications or lifelong disabilities that micropreemies can face...and that "two babies born on the same day at the same birth weight can have two absolutely different outcomes." We grew well aware of this in the NICU, as other babies appeared to do better than Chris, while others did much worse. In Chris' case, we were told of the high chance of disabilities, but only a few days after his birth. We were pretty ignorant.

--Vicki Forman went into labor in much the same way I did--she ignored small signs that things were wrong, just as I did, and we both felt the resulting guilt of not following those signs soon enough.

--One chapter opens with a description of people and the categories they fall into after a preemie birth: the rocks, the wanna-be-theres, and the gingerbread men. The rocks attempt to do everything they can to provide support and love. The wanna-be-theres want to help but don't know how. They often say the wrong thing. And the gingerbread men--they run, run, run as fast as they can away from you. We knew people in all three categories when Chris was born. Some people we hardly knew were rocks. And some people turned out to be gingerbread men. As our close friends (who lost a 23-weeker after 1 week of life) say, "grief reorders your address book." This is true whether it's grief from death, or grief from loss of a "normal" experience.

--Forman worries about what Evan must feel, lying alone in his hospital isolette, and wondering where his twin has gone. Evan was always nonverbal, so I suppose she never found out if Evan missed his twin in his very core of being. I suspect he did.

--I could so relate to Forman's frustration with the nazi nurse who told her she had to take her daughter to the other end of the hallway on a day when siblings were not allowed to visit (even though they were not visiting, but merely restocking breast milk in the refrigerator). I got so mad at certain nurses for similar reasons. I will never forget those feelings of rage.

--"They say it's your baby, but until you go home it's not your baby."

--I sobbed when I read about the first time Forman saw Evan's bare face (when they extubated him). I too remember the first time I saw Christopher's face without a tube forced down his throat. And how normal baby breaths, baby coughs, and baby sneezes could become.

--I remember how when we first got to start holding Christopher when he was about 6 weeks old, we had to alternate days--an hour per day...and how much I ached to hold him longer than that, every single day.

--I remember seeing some of the monster babies in the NICU and wondering what could possibly be wrong with them--they were so huge! Forman has the same feeling about such a baby and her mom, only to grow close to that family and learn their story, a difficult one, too.

--The many doctors calling Evan "the baby" instead of his name reminded me of one neonatologist who cared for Chris who had that very annoying habit. It bothered me so much that I finally spoke to a nurse about it, and she passed the feedback along to him. Bless him--he started using Christopher's name after that.

--Forman writes about how bizarre that the world can go on around her while she grieves for her baby girl. I could relate to this feeling. I stopped reading the comic pages when Chris was in the NICU. They just weren't funny any more. When women complain about minor pregnancy symptoms or make jokes about wanting their babies to come early, I am not amused.

Vicki Forman and I approached the prospect of having premature babies in very different ways. When I went into premature labor, we were given the option to have a c-section (and give him a 50% chance of survival--although these statistics were, at best, a guess, and no chance of disabilities was mentioned) or to have a vaginal birth and risk certain death. We chose the c-section, and we wanted them to do everything possible to save him.

I believe our approach was due to three factors: (1) our complete ignorance about what we were facing--I believe Forman had a much better understanding of the risks involved, (2) a generally optimistic belief system, and (3) our belief that everything happens for a reason, and that whatever happened was meant to be. If the doctors had told us that he would have a 90% chance of disability, would that have changed our mind? But what is a disability? Wearing glasses? A learning disability? Cerebral palsy? Blindness? It could be any or several of those. No one could predict what would happen.

Even though we approached our children's births in very different frames of mind, I deeply admire and respect the choices Forman made (or tried to make), and even more, her brutal honesty about why she made that choice. This book brings to light one of the many challenges of saving these very early preemies. Parents need to be informed of what's at risk and what the potential cost could be. As much as I didn't want to hear all the scary statistics during the NICU experience, I believe it's important for parents to understand the full picture and how things could turn out--just as they need to understand that these are only statistics and no one has a clear crystal ball. Our son Chris is an excellent example of a baby that no one would have expected to do so well. We have friends whose 24-weekers have serious medical and developmental issues.

The doctors are only there for a short time in these children's lives. But the parents are the ones who are there forever--whose lives are never the same. Forman loved her son passionately, even though at first she did not want heroic measures. Whether she would have made the same choices if she were faced with the same at-risk birth again, I do not know. This book is a wonderful tribute to what turned out to be a lovely, but tragically short, life of her son.

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