Village Stories: Loving Lumina

11.01.16 | Stories | by Nicole Cotter

    Hazel Cunningham, two years old, grabs her baby sister’s hand and squishes it into her face for a kiss. When she looks up, her big smile reveals just how precious baby Lumina is to her.

    The Cunninghams' first pregnancy, with Hazel, was a breeze. It was completely normal. So when they got pregnant the second time, they told everyone right away, assuming it would be the same. And when they went for their first ultrasound for their second baby they didn’t notice that the ultrasound technician became very quiet when he looked at their baby on the monitor. Dwayne and Angela left their appointment gushing over their ultrasound pictures and unaware that anything was out of the ordinary.

    But soon they received a call from their midwife. Dwayne and Angela took the call on speaker phone. The midwife told them that the ultrasound showed signs of hydrocephalus -- an enlargement of the ventricle within the brainstem due to excessive fluid. Their baby’s condition was so rare that the midwife didn’t know much about it. A second ultrasound a week later confirmed it all.

    With very little information about their baby’s condition, Dwayne and Angela left the second ultrasound feeling like the wind had been knocked out of them. They headed to Queen Elizabeth Park for a walk. It was a beautiful day but their hearts were aching. They prayed loudly and openly together. They cried together. “We thought our baby was going to die...that it was imminent,” says Angela.

    For the next seven weeks, Angela and Dwayne were in and out of doctors’ and specialists’ offices, learning more and more about their baby’s condition. When they found out their baby was a girl they knew they would call her Lumina.

    At 23 weeks into the pregnancy they were given a diagnosis for their baby girl: Walker-Warburg syndrome. It’s a degenerative disease characterized by muscular dystrophy, hydrocephalus, and abnormal brain development.

    Along with the diagnosis came a lot of negative information about Lumina’s life expectancy and what her life would be like. Doctors told the Cunninghams that Lumina would likely have 50 to 60 seizures a day and wouldn’t know much else.

    Soon medical professionals were asking them if they would terminate the pregnancy. That option was put on the table for them again and again, so they considered it.

    They desperately wanted to have their baby, but they struggled with whether it might be more merciful to terminate. They concluded that they would, but when they called to set up the appointment they couldn’t go through with it.

    As they thought it through they kept coming back to the fact that they just wanted to have their baby. They prayed and prayed for God to give her to them thinking, “If God will give her to us, and we can hold her and love her for a time, then thank you Jesus.” That’s all they hoped for.

    Up until the last weeks of Angela’s pregnancy doctors were preparing the Cunninghams for Lumina’s death. “There were all these conversations about how we shouldn’t try to support her life when she is born. It was very difficult,” says Angela. “Then at some point we just decided that it wasn’t up to them. We decided that it was up to God whether He was going to give her to us or not.”

    Lumina came into the world crying, and Dwayne and Angela cried for joy. “She was a premature baby and she needed help, but she was doing so well,” Angela says. “It was so amazing to have her and to hold her.”

    With one surgery under her belt and only three and a half weeks on earth, Lumina was able to go home. There are definitely challenges involved in taking care of Lumina, but Dwayne and Angela cherish this special and amazing time. Ultimately, Lumina’s diagnosis means she will likely pass away much sooner than they want, but the Cunninghams are so grateful for the amazing gift that she is and how she’s changed their lives.

    “Lumina has changed my heart,” Dwayne says. “I really believe God sent her. To me, that image is so beautiful because it makes my baby this wonderful warrior of God who’s here to change lives.”

    During the weeks in the NICU, Dwayne liked to spend time with Lumina by reading scripture out loud to her. Since he’s still a fairly new Christian, many of the scriptures he was reading were new to him too. One of his favourites that he came across was Psalm 139. “It just resonated with truth and beauty for me,” he says. “God stitched her together. He knew all the days of her life before there were any. God knows Lumina perfectly, and always has.”

    Angela says Lumina has brought her closer to God. “I think learning about Lumina and my pregnancy really made me understand how much I need God,” she says. “Before I always thought I was in control of my life. Even though I believed in God I didn’t really submit myself to His will.”

    Although it’s not always easy, Dwayne and Angela try to take their cue from their older daughter. She’s helped them stay focused on the miracle that Lumina’s life is. “Like toddlers do, Hazel has this way of just exploding with happiness,” Angela says. “I see the joy she gets in Lumina, and I try to see through her eyes. Hazel doesn’t have any sadness about Lumina’s life.”

    Which is why Lumina’s name is so fitting. Lumina Jubilee Cunningham. Lumina, meaning a portion of light. And Jubilee, “...because she’s a celebration. We celebrate her life and it’s a triumphant way to say ‘she’s here, and we’re happy’,” says Angela. “She’s changed everything.”

     

    “For you formed my inward parts;
    you knitted me together in my mother's womb.
    I praise you, for I am fearfully and wonderfully made.
    Wonderful are your works; 
    my soul knows it very well.
    My frame was not hidden from you,
    when I was being made in secret, 
    intricately woven in the depths of the earth.
    Your eyes saw my unformed substance;
    in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.”

    Psalm 139:13-16