Editor’s Note: This interview was conducted via email communication in September 2019. Some of the answers provided by the interviewee were edited to provide clarity for the reader. The integrity of Andrew’s answers was not compromised in the editing process.
Describe the special needs of your daughter
Evangeline was born with tethered cord syndrome (lipomyelomeningocele), which is a type of spina bifida. At 4 months old she required a surgery to detach her spinal cord from a large lipoma on her lower back.
At 3 years old she had a second surgery for cosmetic purposes to remove the large lipoma at the base of her back. Hopefully, there are no other surgeries for the future (the cord could re-attach, but it is unlikely in her case).
When was your daughter diagnosed with autism?
At about 3 1/2 years old Evangeline was diagnosed with autism spectrum disorder. She has been delayed mostly in speech, but due to her spina bifida, she has also had physical therapies to strengthen her legs and improve her walking. She walks very well, but she still does not have the lower body strength and mobility of a normal child her age.
Overall, Evangeline is doing well. Though a bit delayed in certain areas, once she gets the hang of something, she usually excels at it very quickly.
What challenges do you face as a parent to a child with special needs?
My wife and I face many challenges. Evangeline is able to receive most of her therapies at her school (she is currently enrolled in a special needs pre-school program), but she still has many regular appointments with various doctors and specialists in addition to her normal pediatric care (e.g., orthopedist, neurosurgeon, neurologist).
Evangeline looks a little different than most other kids and her behaviors stand out. Because of this, we are aware she may be teased by other kids as she gets older. Though Eva is well-behaved most of the time, she has certain ticks (she might make a strange noise now and then). She has certain rituals too. Some include singing a song she heard in a cartoon when the microwave is on or closing the front door anytime someone leaves our house.
If she is not able to do her rituals or do them the way she wants to, she often becomes distressed and cries. We try not to accommodate her rituals because we don’t want to reinforce them, so we patiently allow her to go through the process and console her when she is distressed.
How do you think these issues will change in the future?
My wife and I also have some concern over Eva’s future. We don’t know how well she will fit in with other people as she gets older and also how she will fit into the workforce as an adult. And sometimes I think about how she will be cared for after my wife and I pass away.
Hopefully there is a lot of time before she has to deal with that (Julie and I are in our 40s), but it is a reality that I still think about. Evangeline has two older siblings who love her very much, so when my wife and I pass we hope they will be there for her if she needs it.
How has raising a child with special needs impacted your approach to the liturgy?
We have not had parishioners with similar struggles approach us, but we have a group of close supporters we are linked to through a retreat called Emmaus here in the Miami area. When Eva was going through her surgeries we had a strong prayer community within the Emmaus men and women at our parish. Our friends at the parish are still interested in Evangeline’s progress. They love her!
Eva has been generally well-behaved at Mass, but sometimes during quiet times she will make strange noises (not like “normal” fidgeting or talking that young kids do) or she may want to sing a song (not so quietly). She seems to be growing out of that now. We have noticed that her peculiar behaviors usually come and then go after a while.
We have had to leave Mass early only once and we have had to take her outside to quiet down maybe a half dozen times ever. Thankfully, Eva shows an interest in the parts of the liturgy including the Our Father and some of the music. I think Mass is just part of her routine now.
What trials have you experienced?
Those uncomfortable moments when Eva is disruptive during Mass and I get the feeling some people around us might be annoyed and not understand she has ASD. Mostly we do our best to be respectful of the Mass and the other people there. We ignore any unfriendly looks we might receive from a very small minority of people there. It is harder when we are away from home and visit other parishes because they do not know her there.
What joys have you experienced?
Seeing Eva put her hands in the prayer position during the Our Father with a big smile on her face and seeing her become enraptured by any particular song during the Mass.
We are united in constant prayer for Evangeline and all other special needs children. God bless you.
Editor’s Note: This post was originally published on June 29, 2018. My wife and I gave birth to our rainbow baby daughter late 2018.
Life events such wedding your best friend, celebrating an anniversary, graduating school, overcoming major illnesses, and learning to overcome addictions normally lead a person to joy.
Usually such cathartic experiences bring incredible joy—joy that cannot be contained! However, I am currently struggling to bring myself to seize the joy of the anticipate birth of my fourth child. Let me provide a little background to clarify my hesitancy.
Past Miscarriage Losses Make Current Joy Tough
Dating back to late 2017 and beginning of 2018, my wife and I lost two children due to miscarriage. Because of the previous loss, and the insane amount of pain associated with it, I conditioned my heart, mind, and soul to be cautious. In fact, I guarded my expectations to prevent possible pain of future loss. As a result, I am neutral, stoic, non-responsive to the current joy in my life!
Sifting through writings, thoughts, and quotes about miscarriage I came across profound wisdom from the great C.S. Lewis,
If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing that she may still hope to “glorify God and enjoy Him forever.” A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.
Okay to Feel Joy Again
While I am not a mother, the Christian apologist’s words still pertain to me and my fatherhood [really any father who suffered the misfortune of having a child not survive pregnancy. A lot of my writings over the course of the year relate to my suffering, pain, distress, worry, and ultimate purgative experiences with miscarriage. Along with the pain and memory of hope dashed, I struggled mightily with letting my guard down to feel joy, to reacquaint myself with happiness of a birth announcement, and to re-orient myself toward hope.
According to Bishop Robert Barron in his book Catholicism, “We say something is beautiful—a face, a painting, a golf swing—when it hangs together as one (it has wholeness), when all of its parts work together in consonance (it has harmony), and when it shines forth as an archetype of what such a thing should be (it has radiance).” A family missing a member(s) cannot reflect the truth and power of the Holy Trinity. I sense that same is true for my family now.
God Always Has a Plan
Gazing at my three children playing at the park and helping each other go up the various climbing apparatuses or going down the slides, I imagined a fourth playing. Difficult to describe this scene it occurred more in the inner recesses of my heart that actually a physical vision or daydream. During my wife and I’s engagement we talked about being open to life, raising a larger family, and we both seemed to desire [at least open to the desire] for at least four children. We cannot describe this desire in mere words. I just believe God’s Providential plan is at work in my life.
I pray for continued support, strength, and opportunities to unleash the joy of the Gospel during our family’s time of anticipation and cautious yearning for a safe birth and delivery of our child!
According to C.S. Lewis, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.” Recently, my faith has been lacking so I was missing the miniature and miraculous letters forming a story before my own eyes. I have previously written about my family’s journey of finding out our youngest son, Josiah, has autism spectrum disorder, but I will provide a short recap for any new readers.
Josiah’s Journey [So Far]
In the summer of 2017, my wife and I noticed our son struggled to make sounds and form words. Because Josiah could not communicate with us he started to bang his head on the ground when he got frustrated. This habit became so bad that we were basically homebound unless both my wife and I were off work at the same time. On good days we could only take our son out for one errand as any transition proved too overwhelming for him.
We knew something had to change—he had to get better help then what we could offer at the time. In December 2017, Josiah was evaluated and diagnosed with autism. We enrolled him in a birth to three program offered by the city. He received speech, occupational, and development therapy. Eventually, his speech therapy was increased to weekly hour long sessions. It took a lot of time, focus, and diligence, but with consistent therapy with professionals and reinforced at home Josiah made tremendous gains. He was able to learn to talk and show us his needs for water, food, a preferred toy, and diaper changes. This summer he said his first 10+ word sentence!
Power of Words
Over the weekend, Josiah hit another milestone goal—telling me his full name and recognizing the letters to his first name. As I was in the playroom getting him dressed, Josiah pointed at the letters on the wall. For each kid, my wife and I hung their names in wooden letters in their rooms. We recently moved Josiah into the older kids room so the wooden letters remained in the “new playroom” (formerly Josiah’s room). This following was our exchange centered around those letters:
Me: “Yes, Josiah that is your name on the wall. What letter is that [pointing to the ‘J’]?”
Josiah: “J, O, S, I, A, H!”
Me: “And what is your name?”
Josiah: “Jo-sia-ah, Fabian, Sha-qin [Chicoine]!”
Practice Makes Progress
Some people have told my wife, “Aren’t you hoping that scientists find a cure for autism? Then you won’t have to waste all the time doing therapy.” This is the wrong thing to say to a parent of children with autism. Thankfully, my wife is quite professional and always tactful otherwise a vicious verbal exchange may have ensued. Autism is not something to be cured. Instead, it is something to be explored. Different does not mean diseased. Unfortunately, people naturally fear the unknown and treat it with disdain.
The reason I continue writing daily and sharing my thoughts is because I want to provide hope, perspective, and joy to families and individuals going through similar situations. Our world does not readily accept differences. I want to be a help change that. I want to bring tangibility and reality as to how autism looks in our little boy.
The Gift of Healing
Before he was born, I struggled mightily with depression. Our previous pregnancy due to miscarriage. We named our unborn child Jeremiah. Josiah proved to be God’s healing gift to us. His name literally means “healer”. All our triumphs are intricately tied to our struggles, doubts, fears, and worries parenting Josiah. We all have a cross to bear. Our cross is not more difficult than most people’s. It is merely different. Josiah’s smile and giggles are infectious. Hearing him tell me his name meant everything in during that moment in the playroom.
Do you have special needs or have a family member with special needs? I would love to hear your story. Please feel free to share in the comments.
Miracles do happen we just are too busy to see them sometimes. Our son’s special needs forces me to slow down and view the world differently. I am thankful that I embraced that change of pace this past Sunday. I pray for the strength and humility to be more willing and ready to learn from my son in the future!
“Is your happiness contingent on whether the cat peed on the carpet or not?” This question was posed to myself, other catechists, and parents by our parish’s Director of Faith Formation. She was referring to events that frustrate us on a daily basis where we may question the purpose of these interruptions in our daily life. Her unique query provoked some thoughts about my recent attitudes towards situations that appear to evade my control. Over the past week and a half, my two-year struggled with allegories, constipation, and changes with his schedule. As both a toddler and someone diagnosed with autism spectrum disorder, my son certainly hated these disruptions. Consequently, these sufferings spilled over into our family life. Chucking of food items and toys ensued when he did not get his way or when my son could not fully communicated his needs.
For a control freak, such as myself, toddler temper explosions wreak havoc on my patience levels. Is my happiness dependent on whether everything is in my control? Would I be truly happier if my toddler followed my commands robotically to the “t” and never had meltdowns? This question about the source of my joy and happiness continued to sow its roots into my heart, mind, and soul.
The work week began with the traditional Monday agitations: technology issues, annoyed customers, and confusion. To add to these annoyances, I woke up with an intense headache that lingered throughout the day. What is more, my personal goal of finishing the month with an impeccable quality score hit a potential hurdle when I failed at a complex call. Hopefully, the quality monitoring team does not review that call! Despite these expected sufferings, an unexpected joy [and peace] existed within my being. My natural inclination to messing up on a call or the craziness of home life would be to develop an anxiety and anger at things outside of my control.
Something provoked me to change my attitude from focusing on the suffering to looking at the opportunity for joy to be found in the suffering. More accurately, Someone provoke me to look deeper beyond my suffering and see the purpose of pain. St. Madeline Sophie Barat declared, “As iron is fashioned by fire and on the anvil, so in the fire of suffering and under the weight of trials, our souls receive that form which our Lord desires them to have.” God cannot get more real, as He is the fullness of all reality, but through the trials of our life we can enter into a deeper relationship with Him. The grace of unexpected joy in my expected suffering cannot originate from my own willpower—it is a free gift granted by the Holy Spirit.
I desire to impact the knowledge of peace and joy to my children. Among caring for their primary physical needs, I am charged with passing on the Truth, Goodness, and Beauty, safeguarded in the Catholic Church to them. According to the Catechism of the Catholic Church paragraph 2223,
Parents have the first responsibility for the education of their children. They bear witness to this responsibility first by creating a home where tenderness, forgiveness, respect, fidelity, and disinterested service are the rule. The home is well suited for education in the virtues. This requires an apprenticeship in self-denial, sound judgment, and self-mastery – the preconditions of all true freedom. Parents should teach their children to subordinate the “material and instinctual dimensions to interior and spiritual ones.”31 Parents have a grave responsibility to give good example to their children. By knowing how to acknowledge their own failings to their children, parents will be better able to guide and correct them:
He who loves his son will not spare the rod. . . . He who disciplines his son will profit by him.32
Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord.33
What struck me most telling about this passage from the catechism is that the home is likened to an apprenticeship. My children will learn how to love others and God from my interactions with them. While home life seems like corralling a bunch of elephants, lemurs, birds, cheetahs or bears depending upon my children’s mood, I am able to control my emotional state. This morning I failed by provoking my kids to anger unnecessarily—my own pride failed to humbly step away from the situation and to listen to their pleas for help.
Actively picking up our crosses daily will not be easy, Jesus never guaranteed this, however freely choosing to embrace suffering instead of fleeing from it will provide an immeasurably and unexpected joy. Still impressed with the candor and articulate manner of phrasing, I am going to conclude with the Catechism of the Catholic Church’s list key items for embracing freedom [and as a result joy too!]. “The home is well suited for education in the virtues. This requires an apprenticeship in self-denial, sound judgment, and self-mastery – the preconditions of all true freedom” (CCC 2223).
Is the lack of suffering the driving force of our happiness and joy? Do we only love life when things go our way all the time? If you let the Holy Spirit into your life, be prepared to experience an unexpected joy in expected suffering!
Having taught high school Old and New Testament in the past and being a cradle Catholic, the newness of the Good News found in the Bible sometimes gets taken for granted. During the Liturgy of the Word for Sunday’s Mass, the Gospel reading actually penetrated my theological torpor and liturgical listlessness. Mark 5:21-43 details two healing stories in one gospel proclamation. The evangelist began with a synagogue official named Jarius pleading to Jesus to save his daughter near death. On the way toward Jarius’ residence, Mark inserts a seemingly tangential telling of the woman afflicted with a hemorrhage for a dozen years! Jesus heals this poor woman and the passage concludes with Jesus raising Jarius’ daughter from the dead.
Reflecting on this passage the following questions invaded my mind:
1. Why does Mark insert a seemingly random story within a healing story? Could he not simply detail the healing of the hemorrhaging woman after completing the passage on the healing of Jarius’ daughter?
2. Does this Gospel reading contain the strangest sentence uttered by Jesus: Who has touched my clothes? Is he not omniscient and all-knowing as God?
3. Power flowing from Jesus…what a peculiar way to describe the healing incident?
These questions initially perplexed me, however, when I had time to think about the passage and re-read the evangelist’s words, and interpret in light of the teaching of the Catholic Church I learned of the deeper more spiritual meaning hidden within Mark 5:21-43 and how it relates to my life today.
Christ Willing to Save All—Social Status does not matter
Sandwiched between the beginning and the end of the healing of Jarius’ daughter, Mark inserted Jesus’ encountered a woman suffering from a blood disorder. After careful review, I noticed the juxtaposition between the two individuals. Below is a chart that showing the differences in how Jarius’ daughter and the unnamed woman came to learn about Jesus.
Woman Suffering Hemorrhage
Father’s Intercedes Actively
Passive Request for Healing
John Paul II declared, “[O]nly in Christ do we find real love, and the fullness of life. And so I invite you today to look to Christ.” Certainly, Mark 5 demonstrates people who recognize the importance and power of Jesus.
According the evangelist, “And Jesus, perceiving in himself that power had gone forth from him, immediately turned about in the crowd, and said, ‘Who touched my garments?’” Obsessed with superheroes, I recently received Legendary: A Marvel Deck Building Game from my wife for Father’s Day. Along with my passion for this geeky deck-building game, I have rented a slew of comic books from the library as well. While my fandom seems random to the discussion of Mark’s Gospel I need to provide a little backdrop to my thought process after hearing the priest read Mark 5:30, the first thought that popped into my head, “I did not know that Rogue made an appearance. Sapping or draining of power is the hallmark of that X-Men character. Marvelously [no pun intended], merely grazing the cloak of Jesus provided the woman healing that eluded doctors many years.
Joking aside, the healing power of Jesus is quite amazing. Previous consultation with doctors failed to ease the woman’s suffering. The passage that may be interrupted as a “power loss” of Jesus is not meant to infringe on his divine nature. On the contrary, Mark, like the other Synoptic Gospels, never dispute the divinity of Christ, he was utilizing language that his audience would be able to understand.
Jesus—Hope in Face of Despair:
Along with Jesus’ desire to save all humanity, regardless of social standing, Mark 5:21-43 focuses on hope in a seemingly hopeless situation. After healing the woman with a hemorrhage, Jesus arrived too late—at least that was what the crowd thought! Urging Jarius to accept his daughter’s fate the onlookers declared, “Your daughter is dead. Why trouble the Teacher any further?” Men of little faith and tenacity would have resigned themselves to start the grieving process, yet Jesus urged the synagogue official to not be afraid.
According to Saint Pope John XXII, “Consult not your fears but your hopes and your dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what it is still possible for you to do.” From the onset of this Gospel reading Jarius actively sought the aid of Jesus and pleaded for the return of his daughter to life when all looked hopeless as she appeared to linger in the shadow of death. Below is a link to a story about Jesus providing miraculous healing to another young daughter—prematurely born!
Uniqueness of the Individual:
A final thought that crossed my mind when reflecting on Mark 5:21-43 was that Jesus focuses on the present moment with grace, love, and resolve. Even on the way toward healing a prominent religious official’s child, Christ paused to listen to the needs of an ordinary, poor woman. Saint Mother Teresa said, “Never worry about numbers. Help one person at a time and always start with the person nearest you.” Do not worry about the past nor the future only concern about the need of God’s children in front of you.
This is exactly what Jesus did in Mark 5:25-34—noticing the presence of the sickly woman Christ stopped to show mercy the person in need at the present moment. As a father of three young children, my focus is frequently divided between juggling the various needs and adventures of my kids growing up. What I learned to devote my attention and time to the present moment and act with love instead of worrying about the various needs and whether it will be adequate or not. The genius of the Gospel message centers on the individual first. Siphoning sanctity cannot occur as love multiplies not divides when more and more individuals come into your life.