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Lakewood Ranch author tells of painful but loving journey with disabled daughter

Lucille Messina says that every day is special to hear "Momma."


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For Lucille Messina, Mother's Day was different.

She would go to the park with her daughter, Jacklyn, and they would sit by themselves.

It wasn't her desire to be alone, but that was her life with a daughter with a degenerative neurological disease. Jacklyn couldn't walk, talk or see.

"We were isolated every time we went to a playground," said Messina, who now lives in Lakewood Ranch with her husband, Karl. "No mother would come over and no one would interact. I would think, 'What did I do wrong? How could I correct this problem I had created?'"

Lucille Messina wrote
Lucille Messina wrote "Waiting to Hear 'Momma'" to educate people about the lonely journey for mothers of special needs children.

Jacklyn Messina lived for just over 11 years, being born on Sept. 25, 1984 and dying on Oct. 14, 1995. It was a depressing, frustration, gut-wrenching time for Messina, a Long Island Railroad employee who lived in Garden City, New Jersey during the time.

But as tough as it was, she cherished every day with her daughter.

As this Mother's Day arrives May 8, Messina hopes mothers embrace their children and understand the gift or gifts they have been given, no matter the circumstances.

After her daughter's death, Messina wrote the book, "Waiting to Hear 'Momma' — A Mother's Memoir." Her hope is that she can share the many lessons learned during Jacklyn's life with mothers everywhere. The book was published in 2019 and is available on Amazon.com.

She tells her story about surviving the low moments.

"I was at JCPenney where they were taking special pictures of children for Christmas," she said. "A lady saw my daughter and hid her daughter's eyes."

It was those kind of moments that hurt her, and she didn't want other mothers to experience the same thing. She would look at pregnant ladies and pray they would have a healthy child so they didn't have to walk in her shoes. She wrote her book to explain her feelings during those low moments and what someone in a similar position could do to stay positive.

"I wanted to help other mothers survive the adversity and the family crisis," Messina said. "I felt like I was alone all the time, and I wanted to let mothers know they are not alone. I didn't want to see mothers give up, or jump in front of a train."

It took Messina time to realize she was not alone. She hit her low when she, indeed, considered stepping in front of a train.

After her co-workers urged her to get help, she went to see a counselor at her work.

"That finally helped me go out to dinner with my husband," she said. "It was a turning point. I had felt I didn't deserve it."

While she found support groups and workers, she realized her biggest rock was right in front of her: Karl.

"I dedicated my book to my husband because if not for him, I probably wouldn't be alive," she said. "He is one in a million. Most men probably would have walked away from me. Whenever I couldn't handle it, he was there every time. Having a partner is priceless."

After Jacklyn's death, they had another daughter, Amy, who now is 25. Amy Messina is a University of Colorado graduate who hopes to pursue a career in museum studies and specialize in the conservation and preservation of artifacts and art.

Lucille Messina remains dedicated to mothers who have a disabled child. She shares stories and lessons from her book to help mothers in similar situations to persevere and to benefit mothers with healthy children who could make a positive impact on those they meet with disabilities.

 

Lucille Messina cherished every day with her daughter Jacklyn, but it was, at times, a lonely journey.
Lucille Messina cherished every day with her daughter Jacklyn, but it was, at times, a lonely journey.

Messina offers 10 suggestions for mothers who face special circumstances with their child:

  1. No matter what adversity you face as a mother, claw and scrape to get yourself to the mountain top to see the sunshine for another day. You are the advocate for your loved one, so take it one day at a time.
  2. Ernest Hemingway wrote, "The world breaks everyone, and afterward, some are strong at the broken places.” Become a warrior, and be strong at your broken place.
  3. Seek out compassionate medical professionals who can direct you.
  4. Lean on your spouse or life partner for support, and plan outings to stay connected with that person.
  5. Find friends to cry with or have a glass of wine with. Most important is finding friends who can listen and not judge.
  6. Join support groups whether that means meeting physically or virtually. Try to find groups who have members with similar problems. It allows you to feel that you are not alone.
  7. Plan to see a therapist and consider all the options they might suggest. You must stay healthy in both mind and body to manage.
  8. Take a walk, keep a journal, watch a funny movie. If you need an hour out of the house, even if it just to browse the clothing isles in a department store, do it! Escape in a healthy way that will rejuvenate your spirit.
  9. Pray. Consider seeking spiritual guidance.
  10. Remember that things could be worse.

 

Five things Messina hopes a mother with healthy children can learn from her book, "Waiting to hear 'Momma.'"

  1. Teach a child to include and play with all children, even the ones that are different. This can increase maturity, responsibility and empathy.
  2. Talk directly to the person with a disability instead of their caretaker/companion.
  3. If you are at a playground, in the mall or at dinner with your child, do not avoid teachable moments when someone is different. Let your child learn how to respect and include children and adults with disabilities to see the talent, fun and bravery in them.
  4. With so many quick fixes in society, it is important to stop and realize not everything is fixable.
  5. You can make a difference in someone’s life with a simple act of kindness.