The story of John Paul Hauser is one that, at the heart of it, asks us to consider the value of human life, in all its variety, no matter its length or hardship.
Even before a baby is born, doctors are doing tests, reviewing ultrasounds, and monitoring the mother closely for unexpected results or problems. If the unborn baby has too serious a condition, parents might be told by doctors that their baby is “incompatible with life.” That’s to say, it’s not expected to live long, if at all, and parents can face a choice of life or death for this person they’ve not yet met.
After doctors identified Trisomy 13 in John Paul Hauser, his parents were coached to consider having an abortion. Despite having this major genetic corruption, and a life that might last for minutes if at all, John Paul’s parents chose to give him that life.
And live he did.
“He just could love so unconditionally. He was never disappointed in you, and he was never angry at you. You were just always good enough the way you were and it was just the kind of love that we the rest of us aren’t capable of giving. He could just give that in his perfect little imperfect state.”
Tami Hauser about her son, John Paul Hauser
John Paul Hauser lived to the age of 12—a much-too-short life for most, but a miraculously long life for someone who had his condition. In today’s episode, we learn how John Paul’s love transformed his family and those around him, and what lessons we can take from his time on earth.
“And that’s how I think of him in Heaven: I just think of him as answering all of our prayers and just with a big delightful smile on his face, like I know that he’s up there just with that same big glorious smile being happy to serve, you know because he was served.”
Barb Baxter about her godson, John Paul Hauser
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Trisomy 13 and a roller coaster
The reflection of John Paul Hauser’s joy still radiates from cherished family videos. In one clip, he’s sitting on his mom’s lap as she claps his hands in tune with “The Hokey Pokey.”
“The Hokey Pokey” is one of those universal songs to get kids moving, and be silly and joyful. John Paul’s condition meant he experienced the hokey pokey and so many things differently than most kids, but he still enjoyed them. He didn’t speak, but he communicated in his own way. He played. John Paul enjoyed music—Schubert’s Ave Maria was a favorite.
It’s important we start with some details of John Paul Hauser the person, because there was a chance we would never have met him. Tami and her husband Tracy made the choice to give John Paul a chance to live, even though he would face great difficulty.
“They noticed some some things looked abnormal on the ultrasound and then they sent us in for more testing,” Tami says. “They told us that he had this condition called Trisomy 13, which is a corruption of all the chromosomes, and it’s the most severe corruption, and that they considered it “incompatible with life.” They told us that he wasn’t probably going to make it to birth and if he did he would most likely only live like a few minutes or maybe at best a few hours after birth.”
Tami and Tracy faced this news with shock, devastation, and fear.
“The very next thing out of their mouth is that we should have an abortion. I couldn’t believe that they were telling us to have, they were coaching us to have an abortion. I didn’t realize it went like this. I just thought people left these appointments and then discerned and decided to have an abortion, but here were just being advised … and more than once,” Tami continues.
“Finally we just said this baby is not going to die at our hands and you know for us it just wasn’t even a decision, like it was just like no. This is…that we would never end our child’s life.”
Tears in the parking garage, seeking a miracle
John Paul would be Tami and Tracy’s seventh child, and life was the only choice for them. After all, each human person has great dignity—we’re all made in the image and likeness of God. Pope Francis warned in April 2024 about a “throwaway culture” turning into “a culture of death” when people presume to be able to use functional criteria to determine when a life has value and is worth being lived.
Be it before or immediately after birth, or the elderly approaching a natural death, all life has intrinsic value.
“We left that appointment and we sat in the parking garage and cried,” Tracy and Tami recall. They needed to figure out the path forward at a time when information about Trisomy 13 wasn’t as readily available for comprehensive.
“There used to be more [babies] that did live. It’s common that they do die, but because of the language changing to say they’re “incompatible with life” and the coaching that there’s just more abortions happening now,” Tami adds. “But at the time, there was nothing positive and no good information out there. And the information that was out there was scary because they have horrible deformities, and so there was a lot of fear.”
In the face of fear, Tami turned deeply to her Catholic faith, and found some comfort in the Gospel of Matthew. She cites Matthew 17:20 in which Jesus says that faith the size of a mustard seed can make it possible to tell a mountain to get up and move. Nothing is impossible.
“We did say okay this is would be a perfect place for God to give a miracle because the doctors are saying that there’s no chance, and this is impossible, so what better place for God to give us a miracle than right here, where man could claim no credit?” Tami says.
She started praying the Rosary and the Divine Mercy Chaplet and the months leading to John Paul’s birth are filled with fear, with tears, with prayer to trust in God, and more fear, crying and prayer.
Trusting in God, and planning a birthday
“When they talked to us and they coached us to have an abortion, that was really the only good coaching–not good coaching–but the only coaching that they had for us and when we said we’re not going to do that they it was kind of like ‘well you’re on your own now,'” Tracy says. “And so then what do you do? There’s no textbook for this, and you don’t know how the story is going to unfold, so there’s a lot of uncertainty. And you know at one point I think it just transitions into faith, you know.”
“For me personally, I just came to realize that this was a story that had that I didn’t know the the script, but I was a part of and I just had to have faith,” Tracy adds. “I had a role here in John Paul’s life and caring for him and whatever that however that story played out. That was my role was to be a good provider for him and take care of him, and give him the best shot at life, and the rest was kind of out of our hands.”
Even praying for a miracle, Tami was still trying to process what was to come. She recalls Tracy mentioning that Tami was crying a lot, and she could only agree. She couldn’t help it, even in seeking some divine intervention.
“And Tracy said, well all the other six children knew our joy at their births and if this baby’s only going to live for like a minute, I want him to know our joy,” Tami says. “That so resonated with me, and I was like in my head, gosh how am I going to get here?”
Part of the challenge, beyond their own need to process the diagnosis, was explaining the situation to their six other children. Even to tell a child that God will wipe every tear from our eyes, children might not fully grasp the complications ahead.
Tami and a friend ultimately decided to build a birthday party for John Paul that would happen if he was born and lived on Earth, or if he was born into Heaven. The family could prepare presents, and cake, and sing Happy Birthday.
The nurses and family could celebrate in a fun and uplifting way, even if the situation was still stressful and fearful. With the birth, each person could hold John Paul and create a beautiful memory, even as the challenges would begin to evolve.
Sigh of relief and new difficulties
The Catholic faith teaches that life is precious, however long it may be. In the case of Tami and Tracy, they weren’t sure if their son’s life would be counted in seconds, minutes, hours, or more. Whatever God provided, the family and parish community worked to ensure John Paul would be surrounded by an environment of love and community.
It’s a mission of beauty to create a loving space, but also one requiring strength.
“I think we all took a big sigh relief when he was born and he was there with us in the hospital room, and then there were a lot of people there and everybody wanted to see him and be a part of that and it was very positive and uplifting,” Tracy says. “And then he coded, and we thought we were going to lose him right there.”
“That was a very rude awakening,” Tracy continues. “It snapped us back into reality, you know that, to your point, you know this could just be minutes or hours — we don’t know you know how long this is and didn’t take it for granted from you know. From that point on we knew that you we didn’t we didn’t know what was going to happen and we cherished every minute.”
Those cherished minutes were shared by the many people who came to hold John Paul, to show him as much love as possible in whatever time he would have. But after people left, with just Tami and Tracy remaining with a doctor, John Paul “coded,” requiring resuscitation.
“[The doctor] was like well this is where I would normally do CPR, so you should just hold him,” Tami recalls. “And I remember thinking, ‘oh my gosh, God I didn’t even get to hold him today.’ Like I wanted him to be loved, but I didn’t get to hold him, and then I just picked him up and held him and then he just miraculously recovered on his own without CPR. And then it was the next day, and then he survived the next day, and then the third day, they said okay well we’re going to send you home and put him on hospice care.”
We are the hands and feet of Christ
John Paul Hauser came home, with hospice care at the ready, still not knowing how long he would live. Day by day, the parish community and extended family continued to show grace and support, helping care for the Hausers’ other children, bringing meals and gifts, and holding John Paul so Tami could sleep, knowing that if he died he would died being loved.
“It was beautiful for our children to see, because we could say to them look this is what the body of Christ looks like,” Tami says. “This is what we do for each other: these people are the hands and feet of Jesus, and God is alive and at work in our lives, and he’s showing this to us by all these people that are serving us right now. I remember putting on our thank you cards this first from Second Corinthians that said it so perfectly and they who with unfilled faces reflect the glory of the Lord are being transformed into his likeness. And that’s you know we just really saw Jesus so present in all of those people during that time.”
This example of charity and willingness to serve has had an impact on the Hauser’s other children, Tracy says, and as they are growing into adults they reflect a similar charity.
A godmother and advocate
Part of the support network for John Paul was his godmother, Barb Baxter, and her family. Barb was a NICU nurse, she knew the challenges of children in intensive care. She would take John Paul some nights to give Tami rest.
“When she brought him she said I’ve just prayed about this a lot, and I know that if God has him die in your arms, it’s because he was sparing me having to have him die in my arms. And I said you know I’m a NICU nurse: he’s not going to die when he’s here, I’m bringing him back to you alive,” Barb says, adding that she initially took John Paul a night every week for about six months.
“I said you know I don’t think he’s going to die, I think he’s he’s going to be with us for a while,” Barb says. Eventually they changed the arrangement so Barb would have John Paul for one day during the week, instead of just at night, which lasted for about 10 years.
Barb’s experience as a nurse gave her a certain confidence in helping with John Paul, but also in being an advocate and adviser for making sure he received the right care. Patients with special needs and complex treatment plans don’t always find champions for their rights and interests.
“It’s because people are counseled to end their pregnancies that the statistics are skewed. I think if more people were encouraged to carry their pregnancies they would understand there’s more they’re just not … those kids bring a lot,” Barb says. “I just think it’s unfortunate that people aren’t encouraged. You asked about because I was a NICU nurse I felt like I was really a strong advocate for [Tami] to say oh no that’s not happening, we’re not going to do that, we’re going to do this because I knew he deserved it.”
Barb didn’t want to see John Paul dismissed or cast aside, and she and John Paul’s parents Tami and Tracy stress how loving he was. Whether John Paul was marveling at lights and colors, or communicating in his own way, he was just a joyful soul.
Balancing joy and suffering
In the life of Christ, one can see the beauty of the miracles and bringing the the true revelation to believers, but also immense suffering. It seems that in the life with John Paul Hauser, one can also see immense joy and also the challenges of life with a child with special needs.
“Tami said it once one time that resonated with me: you know it’s a light cross to to carry with him because he he brought so much joy into our lives, but it was also very difficult,” John Paul’s father, Tracy, says. “Tami gets most of the credit because there wasn’t there wasn’t a lot of good recommendations for care for him, a lot of doctors said just be hands off, and nobody really knew how to care for him. Tami was persistent in constantly trying to figure out how to address his medical needs and his developmental needs and you know just his mobility needs, all of those things were you know a full-time job for her working in the system and doctors and trying to navigate that.”
“And then along the way, I don’t even know how many times I had to give him CPR because he was coding you know and I thought, he’s dying right now as I’m giving him mouth-to-mouth,” he adds. “Then he would come back and then you know we would embrace that for as all we had him, and then he would code again. And so it’s just this kind of emotional roller coaster that you’re on, but you wouldn’t trade it for anything.”
“When we say it’s a light cross … when you experience just that innocence, and that unconditional love, and that joy and gratitude that was just kind of his personality, you always left feeling like you were the receiver of something great, and that you walked away getting far more than you ever gave,” Tami says. “And so it just really even though all those things try talks about were hard it just the good stuff was so much greater that it just took the bite out of it and it just always seemed like oh good I get another day with you. It was hard because every morning when you go into his room and you weren’t sure what you were going to find.”
Daily blessings and the problem of pain
For Tracy, each day that John Paul was waiting to greet them in the morning was a blessing, and it’s one that he appreciated for John Paul’s entire life.
“He was my daily thank you reminder,” Tami adds. “I would go into his room and he was always awake when I went into his room and um he would just be so happy to see me he would just go light up and his whole hands would shake and I mean nobody greets me like that! Come on, like nobody’s that happy to see me. Only he had that special unique ability to do that and I was just always like thank you God so much that I have this child that loves to see me every morning is so happy and then I could just go through my list of thank you for all my other children and he was really my daily thank you reminder.”
“In fact every morning we sang this thank you song and we’d go through his name and all the siblings and he would be smiling and laughing and humming along with me and it was it was a great way to start my day.”
Some who hear about the strength of the Hauser’s faith, even in the face of pain and suffering, may not understand. To be able to hold on to faith and see it as a rock through a difficult period, this is a lesson many have to learn the hard way. Some people just don’t understand how one can hold on to the faith in the face of a cross of any kind.
“I think for us we just always felt like we were given something not like something was being taken from us,” Tami says. “It was like we got a child that we never thought was going to live, so it always felt more like a gift for us and not like you know … of course when he was coding you know that’s real fear, and terror, and you’re scared, and all those things were really really hard. But you know at the end of the day we just had to wake up every morning and just trust that God was going to get us through the next day.”
“I’m Mary Guadalupe, and I’m here to take care of John Paul”
“We had so many signs from [God] during this whole thing,” Tami continues. “Like the time, that comes to my mind is [John Paul] coded and he was on a ventilator, and I was sitting in the hospital room (and this was after we had given CPR for 9 minutes before the rescue squad came), and then he ended up with staph and pneumonia and on a vent and everybody was preparing us for the worst.”
“I’m sitting there in the hospital room praying this devotion to Our Lady Guadalupe with his godmother Barb and then in walks the nurse and she says, ‘hi, I’m Mary Guadalupe and I’m here to take care of John Paul.’ And like how is that not like the Blessed Mother just saying I’m here going to take care of him like there was so many signs like that.”
We often don’t think of God when everything is going right, but Tami says in difficult times, God is there when you need Him. “I think in those moments of suffering, suffering isn’t really a bad thing because we’re closest to Christ on the cross,” she says. “And our suffering and it was the hard stuff that made our family closer and our faith stronger and if we wouldn’t have had those hard things we wouldn’t be we wouldn’t have seen God so much in our lives.”
John Paul’s death and the lesson of the fig tree
“John Paul died on Fig Tuesday and that’s the Tuesday before Good Friday and it’s the Bible story where Jesus is going into Jerusalem and he comes across this fig tree and it’s not bearing fruit and he curses it it withers up and dies. And I never ever understood that Bible passage and out of all the Bible passages that probably bugged me the most because I was always like why didn’t he just heal the tree? Like he could raise Lazarus from the dead surely could fix a sick tree?!” Tami says.
“And I never understood the significance of that Bible story and I felt responsible for his death, because I had forgotten to give him his seizure medicine the night before and then he had a seizure in the middle of the night and we weren’t there to save him and he coded and he died and I um was blaming myself and I just kept saying God, ‘I spent my whole life trying to keep this child alive for you, like I was there for all those coding episodes, and all those hospital visits and or hospital stays and doctor visits, like how could he have died on because of something that I didn’t do?'”
“And then Barb his godmother came to me, like it was a couple weeks after his death, and she told me you know I had the most beautiful heard the most beautiful homily on Fig Tuesday and she said uh the priest explained how Jesus came across the tree and he had it die because he was trying to foreshadow and tell his followers that I control the passageway to life and death and that in three days when I’m going to die even though he wasn’t saying all this they would be able to look back at that fig Tuesday and say you know he could have made that tree live, but he chose her to die.
“He wasn’t just dying for no reason, he was choosing to die for us and then that’s punctuated that he’s the passageway to life and death and three days later when he rises from the dead and conquers death for us.”
“And it just I needed to hear those words and God was so good to take him on fig Tuesday because if he would have taken him any other day of the year I wouldn’t have been able to say to myself this was the day that God was teaching this lesson, and what he was teaching me is that like I thought it was my job all those years to keep John Paul alive and in reality it was never my job, that was God’s job to keep John Paul.”
“We prayed for John Paul so many people prayed for him to live. We spread a devotion to John Paul II’s canonization prayer asking for a miracle from him, and hundreds of people prayed with us because he needed two miracles to be can be canonized a saint and we named our son after him, and all these people prayed and he lived. And then God was there all the time showing me how he was there through his whole life so how could I say, oh you fell asleep and you weren’t there when he died.”
“I couldn’t say that to myself honestly and God convicted me that I just had to have big faith and just know that he was there in his death as well and he took him on a day that was merciful and during a time in our liturgical year, during Easter where it’s beautiful.”
“And then and then the funny thing is when I went to later look up just recently fig Tuesday I was like I should just go back and read that and refresh my memory about that Bible story because I knew it was fig Tuesday and I knew the story, but I hadn’t read the story in a long time so I went and I looked it up and in fig Tuesday it’s where Jesus says amen I say to you if you have faith and do not waver you can say to this mountain be lifted up and thrown into the sea, which was the very same verse my go-to verse that I used to pray for a miracle was the same verse that came back to me on fig Tuesday. So it just had the fingerprint of God written all over it.”
“[John Paul] really just gave us perspective he taught us that um he could be so joyful with all the struggles and he taught us like how we need to be grateful, and he also taught us how we need to be grateful for God because he was such a gift in our life. Most people will go their entire life and they may never know a saint and we were so blessed because we were entrusted with the care of one, and it’s taken the bite out of death for all of us because now we have something really joyful to look forward to you know seeing him again one day in Heaven.”
“And we have a patron saint in Heaven he was innocent, he couldn’t sin, he was a forever baby, and now you know we have a patron saint in Heaven. We just try to ask him to give us the graces to do the things he taught us with which is to be joyful in a bright light of Christ in the world like he was to trust God to care for us like he trusted that we would care for him, and then most importantly to please help us to have the grace to love unconditionally so that we also can do great things for God,” Tami says.
Faith like a child
Jesus tells us in the Gospel of Matthew that whoever humbles himself like a child is the greatest in heaven. The innocence and purity of belief in God may provide that mustard seed of faith to move mountains and be a beacon for the Holy Spirit. John Paul Hauser lived his 12 years being served by those around him, humbled by his condition. Tami Hauser says she’s willing to be a resource for other parents facing similar challenges, and continuing to be an advocate.
To close this episode I leave you some of thoughts from John Paul Hauser’s funeral Mass. Thank you for listening, and please, pray for John Paul and us all.
Video clip: “John Paul became an image of Christ to the world, created in God’s image and in his baptism he took on the likeness of Christ, a unique like likeness of Christ completely unique.
And unlike most of us who often struggle to allow that likeness of Jesus to emerge from our often times preoccupied and selfish hearts, John Paul joyfully allow the Lord to use him to share his unique image of Christ throughout all of his life. He lived as a unique image of our own. John Paul Hauser had no reservation whatsoever in revealing the Lord’s image to those he encountered, and to encounter John Paul was to encounter an undistorted, gentle, happy soul who lived his life as an icon of Jesus. Lived his life as an icon of Jesus.”
God has created me to do Him some definite service. He has committed some work to me which He has not committed to another. I have my mission. I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good; I shall do His work. I shall be an angel of peace, a preacher of truth in my own place, while not intending it if I do but keep His commandments.
Therefore, I will trust Him, whatever I am, I can never be thrown away.
If I am in sickness, my sickness may serve Him, in perplexity, my perplexity may serve Him. If I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends. He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me. Still, He knows what He is about.
St. John Henry Cardinal Newman