Berlin, NJ, May 25, 2019 / 04:00 am (CNA).- Kelly Mantoan doesn’t have a lot of free time. Between mothering 5 children, homeschooling some of them, getting her two youngest sons on the school bus on time, and juggling a writing career and a successful blog, she has a full schedule.
Her days even look a little different from those of the typical mother to a large family, because the Mantoan family’s two youngest children, Fulton, 10, and Teddy, 8, were both born with a rare degenerative genetic disorder called Spinal Muscular Atrophy, or SMA.
Both boys use motorized wheelchairs full time for mobility, and require round-the-clock care to ensure their health needs are met. Kelly and her husband,Tony know something about the strain that can accompany such comprehensive care.
That’s where the idea of a day-long conference designed especially for caregiving, special needs parents called “Accepting the Gift” was born.
“There’s really nothing else out there like it for Catholics – there are Protestant ministries to support parents of special needs children, but we looked and couldn’t find anything that ministered to Catholic parents, whose needs can be really unique,” Mantoan explained.
“From a theological standpoint, the Catholic faith is so instrumental in how I deal with my struggles as a special needs parents, we have such a rich theology of suffering.” Mantoan said, explaining that her Catholic faith has uniquely equipped her to accept her sons’ diagnoses.
“As a Catholic, I’ve been able to see that there is nothing wrong with my child, and God can bring joy in this, and this is who he is.’
Mantoan wanted to bring that kind of spiritual and emotional support to other parents of children with special needs, too.
“Last summer I started looking around and couldn’t find anything like what I was envisioning. We asked our pastor in August of 2018 if he would be supportive – he has a brother with Down’s syndrome who is very involved in our parish life, so we thought he would – and we got permission, set the date, and went ahead and started asking other special needs parents, you know, ‘What kind of talks and things would you want?’”
“We just started throwing things together willy nilly, and I quickly realized realized I needed to fundraise, it was very haphazard, a couple at our church stepped up and did all food and meals and logistics.”
“I’d run a conference before, I’ve run a major homeschool conference, so I’m like, ‘Wow I’m totally qualified to plan something like this,’” Mantoan told CNA.
She called the conference’s inaugural installment a “trial by fire learning experience,”
“It didn’t totally squash my spirit,” she clarified. “It was hard for me at first to figure out how to get the word out reliably to everybody. I have an online presence, our keynote has an online presence, I just figured, well, if we get the word out…”
What Mantoan didn’t count on, however, was that she would find few diocesan offices had staff members responsible for ministry or formation with disabled Catholics.
Still, despite those initial difficulties, the first conference was an encouraging start, she said.
Several dozen parents came to Mater Ecclesiae Church in Berlin, NJ, for the April 27 conference, and a larger remote audience streamed online.
The conference featured a series of talks and expert panels by author Mary Lenaburg, David Rizzo, creator of the Adaptive First Eucharist Preparation Kit, and National Catholic Bioethics Center ethicist DiAnn Ecret, onhand to provide insight into complex ethical scenarios including adverse prenatal diagnoses and known genetic susceptibility.
Rev. Matthew Schneider, the priest behind the Twitter handle @AutisticPriest, was also in attendance. Since announcing his autism diagnosis this spring, he has started a YouTube channel where he speaks openly about his life and ministry through the lens of autism.
Mantoan called Schneider, who live-tweeted the event, “a real ray of hope to parents of autistic kids who are wondering what the future may hold. He advocates for those with autism, but also speaks from the perspective of a priest and offers a unique insight on how to make parishes more open to disabled people.”
Keynote speaker Mary Lenaburg reminded attendees “my daughter – your children – are heralds for a new world … our children show us the face of God every single day.”
Looking toward next year’s event, Mantoan said, “I have to work at getting the word out more in advance so it’s not such a surprise – logistics, not being well-known or established…it’s a work in progress, and there is no major network for Catholic special needs parents to connect – so we’re asking ourselves, how can we connect and share resources?”
“Many special needs parents are full time caregivers. They can’t leave. They can’t fly somewhere for multiple days of travel for an event. They are on 24/7. That’s who we most want to reach, and that’s why we streamed the content,” she said.
“This is for the frazzled stay-at-home caregiver who feels like they really can’t get out, for whom it’s so hard to get that face to face support.”
“I know what it’s like when you have a lot of little kids, a lot of special needs kids, you might feel isolated, might be the only special needs family in your parish,” she explained.
When asked whether other factors affect Catholic special needs parents uniquely, Mantoan pointed out that family planning can be a big difficulty and source of stress.
“In so many families, you have a special needs child – especially with a grave medical condition, and that’s it, you’re done. You get sterilized, you stop having kids.”
Mantoan continued, “If you’re a faithful Catholic and you have kids with genetic diseases or you are disabled with a genetic disease that makes childbirth dangerous, if you have a large family with disabilities, do you keep being open to life? How do you manage special needs parenting and continue living your life?”
“For us, for a long time, the whole family planning aspect was a huge struggle…When we got their diagnoses, it was like, oh, I have a 1 in 4 chance of having a child who also carries this disease.”
“It was difficult for a long time,” Mantoan admitted.
“Probably I can say within the last 3 years we’ve finally reached a point of peace. Basically up until that point, we were doing what the Church taught because we knew it was right, but we weren’t happy about it.”
“We’re still very, very prudent and very, very cautious with NFP, and I’m really excited we didn’t go ahead and do something drastic like get sterilized. Thankfully we hadn’t taken any permanent steps during all that difficulty.”
“I think that’s the thing, you get to a point where you say ‘thank goodness we were faithful;’ it strengthened us as a couple. And my feelings now are totally different. My heart is in a different place in terms of what I can accept. We were really angry, and now we’re really happy we were faithful. Because there is peace now, and our marriage is stronger.”
Online access to “Accepting the Gift” is still available at the Catholic Parents of Special Needs Children (CPSNC) website, and planning for next year’s event is underway.
“If you’re in the middle of nowhere and your parish is telling you, ‘We don’t know how to give your kids sacraments;’ if you don’t have support, if you feel isolated, we want to alleviate some of that for you, to help you understand what your rights are as Catholic parents, to help you navigate that,” Mantoan said.
“The message is that there is joy here; joy in accepting your kids and who they are, and joy even in the midst of suffering and hardship.”
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Wonderful comeback by Cardinal Burke beating the odds with faith and spiritual courage. Even if the Dubia failed its purpose we need Cardinals Burke and Brandmüller as silent witnesses to a great injustice against the Church.
Praise God for this good news. Ive been praying for his recovery. Thank you Blessed Mother for your intercession.
The Cardinal is a prominent vaccine sceptic. I pray not only for the Cardinal for his quick recovery from COVID but also and above all for the rightist conservative media propagandists that they turn away from and repent of their death dealing (ironically promoting “my body, my choice” pro-choice and anti-life ideology) work in the disinformation and misinformation about the vaccine they have infected upon people like the Cardinal and a lot of Catholics as well.
All three of the vaccines available in the United States used cells derived from tissue taken from murdered babies in the development/testing phase. One of them also uses such cells in the production. That is not disinformation nor misinformation.
Leila:
The vaccines for Covid are justifiably declined by people of good will, for a range of reasons, both scientific and religious.
While I have been vaccinated myself, after long deliberation, finally making the choice not based on any available “science” (because we all should acknowledge the stark reality that none of the vaccines are or can be approved, they have merely been authorized, because the proper and required testing has not and cannot be done), but because my college-going children were forced to be vaccinated by their Catholic universities, and I decided that whatever risks they were forced to take, I wanted to assume with them as well, while hoping that the choice turned out for the best for all of us.
It has been appalling to behold the suffocation of open public and scientific discourse by the self-aggrandizing cultists propping up the brothers Frankenstein, Anthony Fauci and Mario Cuomo, a pair of lunatics who worked over-time “managing” their PR by confecting “Emmy Awards” and publicly fantasizing about DiNiro and Pacino portraying their “heroics” in the movies, while confecting public policies that killed elderly people in New York at 2.5-TIMES the average rate.
The whole “vaccine-policy-debate” is woefully short of what ought to be expected of both serious scientists and serious Bishops.
His Eminence, Cardinal Burke, Health Update
August 21, 2021
Praised be Jesus Christ!
The Cardinal’s family is pleased to announce that His Eminence has come off the ventilator and will leave the ICU today to return to his hospital room. His sister spoke with him on the phone this morning, and His Eminence expressed his deep gratitude for the many prayers offered on his behalf. His family asks that we continue those prayers for his full and speedy recovery, and they are grateful to God for the exceptional medical care the Cardinal has received from the dedicated doctors and nurses who continue to assist him.
The Shrine of Our Lady of Guadalupe and the Cardinal’s media will provide further updates as directed by his family.
God bless you.
Rev. Paul N. Check
Executive Director
Shrine of Our Lady of Guadalupe
I had prayed the rosary for his healing and was so happy to hear he was getting better and out of ICU this afternoon that I promptly offered my communion this evening in thanksgiving. What a mighty savior we have in Christ Jesus.
I join Dianne McHenry and others in rejoicing, and like so many I prayed the rosary (the Joyful Mysteries) in hope that Cardinal Burke’s life would be spared, and I thank God for the gift of his recovery.