|Jodi O’Donnell Ames
Motherhood is a gift that I always wanted to open.
As a little girl, I rocked dolls to sleep and hugged any baby, plastic or real, within my reach. My sister Kate, 13 years older, had her first child when I was 7 years old. I remember the night she and my first niece came to visit. A shawl graced my sister’s shoulder and enveloped her baby closer; they were one body, still, a circle of love. I did not say a word. Kate gingerly touched her baby’s face and hands. She smoothed the bundling and closed her eyes too. The baby was suckling and content.
From then on, I wanted three children. Being too young to be a mother, I did the next best thing — babysat. By the time I was in high school, I spent more time with children than peers. At college in the 80s, I was a nanny for hire. Read great books. Hold little hands. Feed curious minds. It confirmed my desire to have my own children.
Little did I know then that I would have three children one day, but the births of two of those children wouldn’t involve any labor pains for me. There would be much greater pains at stake.
By the time my husband Kevin and I were expecting our first child, I was 26, and had the rhythm of motherhood down. When Alina was born, we were elated. She was absolutely perfect. Since she rarely slept, we had quality play time. She was cute, curious and clever. We were blessed with a miracle and found her ability to dominate any activity and every part of our home, funny.
The summer that Alina turned one, something strange happened. Our family took a bike ride on a warm June day. Alina was happy in her baby seat on the back of Kevin’s bike. We were turning a corner and, suddenly, there was crying. Kevin, then 30 years old, had lost control of the bike and he and Alina went crashing to the ground.
Later, when we were home, I nursed Alina to sleep. She was calm and peaceful; I was a wreck. It was then that I knew that I would never nurse another child. She was going to be an only child. It was a mother’s intuition. Kevin was sore, but more than his injured elbow and knee, was his dignity. “What happened? Why did I fall? It was impossible for me to keep the bike up. Something is seriously wrong. I hurt our baby, and I feel awful.”
We made a doctor’s appointment right away. Our family doctor then sent us to a sports medicine doctor. The look on his face was disconcerting. “I’m not sure,” said the doctor after several tests, “but you might want to see a neurologist.”
Eight exhausting months later, Kevin received a diagnosis: amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease.
Sniffles and silence accompanied us home. I held on to the words of one of the nurses. “You are your own percentage,” she had said to Kevin, with a hug. “You can beat the odds.” These few simple words became our mantra for six years before Kevin lost his battle with ALS.
I lost my composure that evening when I held Alina. She would be progressing, learning to talk, run and potty, and Kevin would be regressing into total dependence, unable to do the simple tasks she was mastering.
Kevin’s battle with ALS ended in 2001. Alina was 8 years old. I was 35. My hopes and dreams were placed with my husband in his coffin.
In 2002, my mother sent an article from the Pocono Record. It described how Tina Singer Ames wrote a book called What Did You Learn Today? for her children Nora and Adam, and her husband, Warren. It was beautifully crafted in hopes of helping her children, as well as other children, understand ALS. It also was a gift from Tina to her family to cherish for the rest of their lives. Tina was diagnosed with ALS in July 2000 and died in December, six months later.
People talk about falling in love, a lot. Usually stories focus around couples and how they meet. Falling in love can happen with children too, and it did when I met Nora and Adam. I was working as director of communications for the ALS Hope Foundation in Philadelphia. I had arranged a children’s day — a day for children of ALS patients and grandparents to have fun and forget. I ordered 50 copies of What Did You Learn Today? Warren, Nora and Adam Ames arrived with the books.
Warren was friendly and respectful. He and I had a lot in common and talked freely about our losses. We missed our soulmates. We cried a lot. We felt empty. But it was his children, Nora and Adam, whom I couldn’t seem to forget.
Adam was 7 years old. His hair was disheveled and his laces untied. His face was that of an older child, concerned. Nora was 11, tall and svelte, nearly my equal in size. Sweet and endearing. I immediately felt their loss like a pull in my stomach. I wasn’t sure if I wanted to vomit or run. Instead, I pulled them both close to me, into my arms. I sat them on my lap and tried to give them, briefly, a mother’s love, my love. I wanted to let them know that they would be OK. Their eyes, though, said differently, we need our mommy.
That afternoon, I fell head over heels in love with Nora and Adam. Warren was dating someone, so I invited all of them to my home for dinner. Dinner was nice. Warren “forgot” to invite his girlfriend.
Then he ended his relationship.
We met at the park. We met at the zoo. Whenever we were together, we were whole. A man, a woman and three kids who enjoyed being together and having fun. We were all sad independently, but when together, we managed smiles and laughter. Surprisingly, Warren and I had very similar parenting styles. Tina and I had similarities, too. She was a teacher and so was I. She was a child’s advocate and so was I. She wanted the best for her children and so did I.
One day, after a dinner at Friendly’s, I asked Warren about Tina’s last words. He looked at me, tears running down his face. “She,” he paused, gained his composure and whispered, “she said, ‘but who will raise my children?’”
It was then and there, in the parking lot of Friendly’s, that I knew I was chosen to raise Nora and Adam.
People ask me frequently about my relationship with my stepchildren and how we’re so close. It is very simple really, so simple that I have no elaborate answer. I have never viewed Nora and Adam as stepchildren, but as my children. My maternal instincts, the ones that were sacred to raising Alina, were sacred to raising Nora and Adam also. I have loved them equally and unconditionally.
Love and faith are the two main ingredients needed to raise children in a blended family and in any family. Let love guide you in your parenting and never differentiate your children negatively. Always celebrate the wonderful qualities each child brings to the group. Have faith in your maternal instincts and their strengths.
This past Mother’s Day, Adam, now 17, gave me a handmade card. It read, “God could not be everywhere, so he invented mothers.”
Then he added, “Thanks for being everything to me.”
I did not give birth to Adam or Nora, but every part of my soul thinks I did. And no one can tell the difference.
Editor’s note: This blog was shortened from the original, which was posted Oct. 8, 2011.
About the Author
I have raised three children who learned about ALS as young children. My late husband, Kevin Gerard O'Donnell, heroically battled ALS from 1995 until his death in 2001. He was funny, handsome, loving and brave. Our daughter Alina was almost 3 when Kevin was diagnosed.
In 2003, I married Warren Ames and became the mother of two children, Nora and Adam, who were then 11 and 7. Nora and Adam lost their biological mother to ALS in 2000, when they were 9 and 6.
ALS has united my family in hope and in love. We live each day with hope for tomorrow and want to help other families who, like us, know ALS all too well. Not a day goes by without remembering Kevin and Tina, and the lessons they have given us. We formed Hope Loves Company in their memories, as a way to provide emotional and educational support to children of ALS patients.
Tina, a child counselor when she was diagnosed with ALS, wrote the book What Did You Learn Today? to help younger children come to grips with the changes brought on by ALS. The book is available on the Hope Loves Company website under "Resources," or on amazon.com.
Follow my ALS blog at joames.wordpress.com.
"If it were not for hopes, the heart would break." — Thomas Fuller