Maddie was born with chromosome 10 deletion, a rare genetic abnormality that includes deafness, a cleft palate, and a hole in her heart. Her mother, Mallory, remembers learning about her baby’s multiple disabilities while she was pregnant with Maddie ten years ago.
The doctor explained, “Your baby has had a stroke. The chances of you having a healthy baby aren’t good.”
Mallory recalls, “The next six months were a whirlwind of specialty doctors’ appointments, numerous ultrasounds, countless sleepless nights, and hours spent praying for our unborn baby.
To our amazement, every three weeks when we would go in for another ultrasound, we would hold our breath, and there would be our baby, kicking and waving at us on the big screen. When the day came for our Maddie to arrive, it was chaos in the delivery room. All the specialists were ready for her arrival.”
“Mostly, I remember the silence after Maddie was born. She didn’t cry. The next week was a revolving door of doctors, surgeons, and nurses in the neonatal intensive care unit informing us of diagnoses that we had never heard of before. After a month of being in the NICU we got the official diagnosis: chromosome 10 deletion.”
The geneticist explained that there have only been six people in the entire world that have been born with the exact same chromosome 10 deletion as Maddie. Sadly, none have lived past age four.
“I planned to enjoy her for what limited time we had…It was completely devastating and overwhelming.”
Mallory struggled with intense loneliness from not knowing any other families living under the strain of isolation and disability.
But all that changed when Mallory, Maddie, and Maddie’s five-year-old brother Blake went to Family Retreat!
“I cried tears of joy! I had an overwhelming amount of joy because not only was this the first place I had ever taken Maddie that I didn’t have to ‘explain’ her or why she made the noises that she does, but it was the first place where Maddie could be herself!” declares Mallory.
“For we are God’s masterpiece. He has created us anew in Christ Jesus so we can do the good things he planned for us long ago.”
And it wasn’t only Maddie and Mallory who experienced God’s great love and an abundance of joy at Family Retreat.
“Blake was beaming when I told him he got to enjoy camp and not have to interpret for his sister when she was using sign language,” shares Mallory. That’s because at Family Retreat, every member of the family is celebrated as fearfully and wonderfully made by the very hands of God!
Disability impacts the entire family, and so the entire family requires personalized care and individualized attention.
Children and adults with disabilities have the time of their lives finding that absolutely everything is customized and accessible to them. Their siblings get a much-needed break from serving as caregivers to their brothers and sisters, and their parents have the opportunity to receive support from others who understand their many challenges. And everybody learns more about Christ’s extravagant love.
“How priceless is your unfailing love, O God!”
Mallory explains, “While Maddie was being well-cared for, I was able to get spiritual renewal and refreshment and sit and cry with parents that just ‘got it’ because they also woke up every day to similar worries and stresses. We prayed and cried together. To hear their stories and all that they have overcome as well is an indescribable feeling.” Family Retreat gave Mallory new hope for the days ahead.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
2 Corinthians 1:3-4
Mallory sums up her family’s Family Retreat experience perfectly when she says, “Our happy place on earth is truly at Joni and Friends! It’s an answer to prayer to have Joni and Friends in Louisiana!”