A Parent’s Journey: Lilianna Wiebe and Alyosha Nicodemus

Introduction

The journey of parenthood is often unpredictable, filled with joys, challenges, and moments of profound reflection. For Lilianna Wiebe and her husband, the path took an unexpected turn when they received their son’s diagnosis. This is their story, in their own words, detailing their fears, triumphs, and the invaluable support they found along the way.

A Life-Changing Diagnosis

When Lilianna and her husband first heard of Alyosha’s possible Trisomy 18 diagnosis, it was a moment of profound shock. “My husband and I were utterly shaken,” she recalls. “Our experience with our first doctor made us worried that our baby would not make it to term. He told us we should come back to check if Alyosha still had a heartbeat. That was at 17 weeks. His warnings to us were completely without basis and none of his ideas about Alyosha were true.”

Alyosha Nicodemus Wiebe was suspected to have unconfirmed Trisomy 18, along with myelomeningocele and AVSD. The diagnosis presented a wave of challenges and unknowns. The couple struggled to come to terms with what it would mean for their child and their family.

Their thoughts and fears – they wanted to take their baby home, to be parents, to have this wonderful child in their lives. They were made to be afraid that they would never meet their child, and this became their daily prayer, that they would hold Alyosha in their arms, no matter what.

The Day Alyosha Was Born

“When Alyosha was born, the moment we heard him cry, our hearts were lifted! Every desire of our hearts was satisfied, there was a heavenly glow, we had witnessed God working miracles in front of us and our doctors. Alyosha’s birth changed us as people and we will never be the same. It completely transformed us and helped us realize that what matters most is being known and knowing those you love, and Alyosha experienced that with us, and us with him.”

Though the diagnosis loomed in the background, the joy of meeting their son overshadowed the fear. Each breath he took, each small movement, became a milestone worth celebrating.

Lessons Learned and Evolving Perspectives

“Most transforming realization – the value of each life comes from the opportunity to experience love, not from length of life, or how that person makes other people “happy” In a worldly sense. No, the true meaning is in the innocent experience of love from child to parent and parent to child.”

The trisomy journey is challenging in many ways. Challenging your marriage, needing to make decisions for your child with their other parents. That is hard.

Over time, Lilianna and her husband found themselves shifting from fear to acceptance, from grief to celebration. The journey was not without its hardships, but through it all, they discovered a strength within them they never knew existed. 

“It’s hard to feel so misunderstood by doctors and keep pushing ahead, sometimes you feel like most everyone thinks you’re crazy. Maybe they even ask why you didn’t have any abortion and why you chose such a difficult road. But we don’t feel that way. We didn’t “choose” this. God chose us to be here for Alyosha for as long as he needs us, and we will always be here for him and for all of our children.”

Finding Support in the Community

“Be Not Afraid was the front line of support for us. They gave us a case worker from Willow Story and she aided us in many ways. She helped us put together a very solid birth plan, and that is how we managed to get Alyosha the care he needed. Without her I don’t know who we would have turned to.”

Finding a community that understood their challenges made all the difference. Support groups and resources provided them with information, emotional comfort, and a reminder that they were not alone. They also used the SOFT website resources to help them read about Alyosha’s medical conditions and speak about them with their doctors.

A Message for Other Parents

“We just want parents to have access to the same resources we had. It helped us when we felt helpless. We want parents to feel they can help their child and plan for their birth while they have time. I only wish I had realized how wonderful it would be to hold my baby, that I could have spent more time thinking about him and not just worrying about medical procedures. That I would treasure that he was in my belly and I could know he was healthy and safe. Treasure every moment.”

Lilianna’s journey is a testament to the power of love and resilience in the face of uncertainty. Her story serves as an encouragement for other parents navigating similar challenges, reminding them that they are not alone, and that every moment with their child is precious.

Conclusion

Through all the trials and triumphs, the Wiebe family continues to embrace each day with courage and gratitude. Their journey highlights the importance of hope, community, and the profound impact of unconditional love. No matter what the future holds, Alyosha’s life is a beautiful testament to strength and perseverance.