“Before I formed you in the womb I knew you, before you were born I dedicated you.”Jeremiah 1:5
January is Respect Life Month. This year I’m the Aunt of micro preemie TTTS identical twins born at 25 weeks. Isabella born to heaven. Sara fighting for her health & development in the NICU. Both unique, fully alive human beings. Both fully capable of being legally aborted.
After weeks of anticipation (and weeks of cold virus and bacterial infections that aren’t compatible with NICU visitations and medically fragile children), I recently visited my amazing 30 week old niece in the NICU. She is full of personality and spunk. So herself. Not me. Not her mom. Not Dad. Not Grandma. Not her siblings. So Sara. Unrepeatable Sara.
As I saw her roommate fighting for his life or other medically fragile babies in incubators around the NICU, I wondered: What if instead of terminating babies’ lives, we put resources, energy, & creativity into advancing medical care, diagnoses, treatments, & uncovering more holistic care for babies and mothers? What if we developed fetoscopic surgery procedures instead of developing abortion procedures? What if we sowed hope & possibilities in difficult situations instead of fear & hopelessness? What if we empowered & assisted men & women as mothers and fathers? What would our nation be like then?
Our Lady of Guadalupe, Patroness of the Unborn, pray for Us!
“When I closed the eyes of my dear little children and buried them, I felt sorrow through and through… People said to me, ‘It would be better to never have had them.’ I couldn’t stand such language. My children were not lost forever; life is short and full of miseries, and we shall find our little ones up above again.”St. Zellie Martin
After a very risky and complicated identical twin pregnancy, my family and loved ones buried my niece Isabella born to heaven at 25 weeks. There are no pictures or videos of her funeral, but the memories and emotions are seared forever in my heart and mind. There are few words to adequately describe witnessing your eldest brother carry a tiny white casket out of the Chapel after his daughter’s funeral Mass or watch him place her int he ground. Or hold your niece and godchild for minutes while she cries into your wool coat. Or tell your teary eyed and recovering sister-in-law, “I’m so grateful you’re here, and I don’t take that for granted.” We could have experienced a double to triple funeral. And there is still the hopeful but unknown future for her sister Sara.
We did this together as a family and faith community. Withing the sacraments, we commended and entrusted this beautiful, precious girl to God. I’ve learned through the years not to ask “why” anymore but “how.” How has this child transformed our lives? How has this child reflected God? How have I responded to this gift? How can I act with compassion? Am I grateful for this life? Am I open to this life? Am I open to love- the love of a child? Yes.
Dear, Isabella, Aunt Hannah loves you and misses you. Your entire family loves and misses you. I hope to join you in Heaven someday. Requiem Aeternam, baby girl.
Happy Feast Day of Our Lady of Guadalupe or Nuestra Señora de Guadalupe or the Virgen de Guadalupe, Patroness of the Americas & the Unborn!
Our Lady of Guadalupe to Saint Juan Diego:
“Know my son, my much beloved, that I am the ever Virgin Mary, Mother of the True God who is the Author of life, the Creator of all things, the Lord of heaven and earth, present everywhere. And it is my wish that here, there be raised to me a temple in which, as a loving mother to thee and those like thee, I shall show my tender clemency and the compassion I feel for the natives and for those who love and seek me, for all who implore my protection, who call on me in their labors and afflictions: and in which I shall hear their weeping and their supplications that I may give them consolation and relief. That my will may have its effect, thou must go to the city of Mexico and to the palace of the bishop who resides there, to tell him that I have sent thee and that I wish a temple to be raised to me in this place. Thou shalt report what thou hast seen and heard, and be assured that I will repay what thou dost for me in the charge I give thee: for I will make thee great and renowned. Now thou hast heard, son, my wish. Go in peace. . . employ all of the strength thou art able.”
-December 9, 1531-
Coronation of the Image of Our Lady of Guadalupe Prayer:
Blessed are you, O Lord,
God of heaven and earth,
who, in your mercy and justice,
cast down the proud,
and exalt the humble.
In the wondrous designs of your providence,
you have offered a perfect model
in the Incarnate Word and in the Virgin Mother:
Your Son, who voluntarily humbled Himself,
even to death on the Cross,
shines in eternal glory
and sits at your right hand
as King of kings and Lord of lords.
And the Virgin, who desired to call herself your handmaid,
who was chosen as Mother of the Redeemer
and true Mother of the living,
and now, lifted up above the choirs of angels,
gloriously reigns beside her Son,
interceding for all men,
the advocate of grace
and queen of mercy.
Look with kindness, O Lord, on these your servants
who, in placing a royal diadem
upon the image of the Mother of your Son,
recognize in your Son the King of the universe,
and invoke, as Queen, the Virgin.
in following their example,
we too might consecrate ourselves to your service,
and make ourselves available to others,
fulfilling the law of charity,
thus triumphing over selfishness,
and in generously giving
we might lead our brothers and sisters to you.
seeking humility on earth,
we might one day be lifted to the heights of heaven,
where you yourself will place
on the heads of your faithful
the crown of life.
Through Christ our Lord.
My mom and I watched a documentary on EWTN recently called the “Vanier Way.” A group of students from the Canadian Jean Vanier Catholic Secondary School: “visit the L’Arche community in Trosly-Breuil, France, and immerse themselves in the culture as they partake in workshops in pottery, mosaics, and gardening.” (@EWTN) These disillusioned high school students visit Parisian and French cultural, religious, and historical sights as well as immersing themselves in a few different L’Arche communities around the Paris area. The students were more moved by the L’Arche community than the Eiffel tower. Why? Because they experienced authentic love and joy. They experienced real truth and beauty amid the broken, outcast, and “undesirables” of society.
“L’Arche was not my project, but God’s.”- Jean Vanier
The students are blessed to interact with the Founder Jean Vanier who established the first L’Arche community in the late 1960s outside Paris after visiting local asylums. A female friend suggested the term “L’Arche” or “The Ark” in English indicating a community where people with intellectual disabilities could create a new family and no longer hide in the shadows of society. In 1970, the first L’Arche community opened in India. In 1972, the first USA L’Arche home was founded in Erie, PA. Theologian and priest Henri Nouwen lived his last 10 years at a Toronto’s Daybreak L’Arche home. As the founder states, “L’Arche’s first seeds were planted in the earth of the Roman Catholic Church. Through God’s grace, other seeds were planted in other soils. . . L’Arche became ecumenical.” All L’Arche communities have a religious dimension to their community even in communities with those of severe intellectual disabilities. “Some communities are one religion, others are inter-denominational or inter-faith. Members are encouraged to grow in their spiritual journeys, and people who are not affiliated with a particular religious tradition are also welcomed and respected in their freedom of conscience.”
“Without this spiritual dimension and growth in holiness, L’Arche could become simply another group home. It would lose what makes it unique.”- Jean Vanier
The beauty of the documentary lies in the reactions of the high school students interacting with members of the community, how they process those interactions, and the transformative seeds planted. Another beautiful aspect is the insightful and authentic observation and story telling quality of Jean Vanier who speaks with a spiritual depth, peace, and humility few people evoke. He warns about the impact of social media (guilty here) and the power of “the tyranny of the Group.” And provides interacting on a human level with “the other” as an antidote against “the tyranny of the group.” These human interactions, absent of cell phones and social media shake us up and out of ourselves and illuminate the lies and pressure we follow so blindly with or without question.
The heart of the Vanier Way is simply the recognize and live in accordance with the profound recognition of the intrinsic dignity of every human being from conception to natural death regardless of form or function. Our job is to love. Love and be loved in return. To love without measure or degree. To love the lovable and unlovable. And to allow love to transform us and inform us. “Freedom exists for the sake of love.” – St. John Paul II
“Our community life is beautiful and intense, a source of life for everyone. People with a disability experience a real transformation and discover confidence in themselves; they discover their capacity to make choices, and also find a certain liberty and above all their dignity as human beings.” —Jean Vanier
May God bless you and keep you! You are more precious than you believe!
To learn more about the United State’s L’Arche community: LINK
To learn more about the International L’Arche community: LINK
For those unfamiliar with autoimmune disease either personally or by association, the best description I can give is your immune system, which keeps you healthy, begins attacking healthy cells – your body essentially attacks itself. There are a multitude of autoimmune diseases: Rheumatoid Arthritis, Lupus, Celiac’s Disease, Scleroderma, Psoriasis, Sjogren’s syndrome, Ploymyalgia rheumatica, Pernicious Anemia, Multiple Sclerosis, Type 1 Diabetes, Chrohn’s Disease, Vascultitis, etc.
According to the American Autoimmune Related Disease Association (AARDA,) over 50 million Americans are affected by autoimmune diseases with over 80 types of known autoimmune diseases. Autoimmune disease can run in families and 75% of those suffering from an autoimmune disease are women. African-American, Hispanic, and Native Americans have an increased risk of developing an autoimmune disease.
As with many diseases, autoimmune disease can have stages from systemic to remission. As a point of clarification, I’m not officially diagnosed with an autoimmune disease. My entire life I have lived with a loved one who has multiple autoimmune diseases. I also have friends with autoimmune diseases, especially conditions that became prevalent after college.
My blog post isn’t just an autoimmune disease awareness post, but an exploration into living with those silently suffering with these diseases.
- The Dignity of the Human Person: “A person is an entity of a sort to which the only proper and adequate way to relate is love.”- St. John Paul II, Love and Responsibility. Tragically, our culture maintains a mostly utilitarian and social Darwinist approach to the dignity of the human person- if you can’t quantify the worth by the socially accepted rubric it ain’t there. I’ve witnessed the very real, painful struggle of a loved one clinging to their intrinsic worth and dignity while the world feeds them lies about how they are a burden on their family, loved ones, community, and society. A person is person regardless of form or function. Even the sickest or most deformed and seemingly inconvenient person is a child of God and reflects some aspect of the divine. Love bears all things and believes all things. Love rejoices in the truth.
- People vs. Things: As the graphic above depicts, everyday life can be life threatening to a person with an autoimmune disease, especially a person facing a systemic autoimmune disease. Don’t even get me started about the inundation of artificial fragrances and bath/beauty/home products in North America creating a toxic environment. People don’t want to live in bubbles, but when the outside world is toxic, your options can be limited. Our home may be hypoallergenic and fragrance free, but we chose that long before it became a life-threatening need. Sometimes the process is arduous, expensive, and inconvenient or seemingly hopeless. But by choosing the person over a lifestyle and the things that make a lifestyle, we gain more than we “loose” in inconvenience, appearances, and expense. Our lifestyle may not be “sexy” or “glamorous” but it’s worthwhile and authentic.
- A Person Isn’t a Tool: “You must remember to love people and use things, rather than to love things and use people.”- Venerable Fulton J. Sheen. A person isn’t a utility knife once rusty or broken you either repair or discard. Sometimes you can’t “repair” or “fix” a person, but you can suffer with a person (i.e., compassion.) Life with autoimmune disease or living with a person with an autoimmune disease isn’t easy and can be hard- the best type of hard. The lifestyle requires and demands mental/emotional/spiritual energy, staunch courage, creativity, perseverance in adversity, and loads of divine grace. Having a decent sense of humor and a level of abandonment in Christ helps too. But I found many people who struggle and suffer with an autoimmune disease have an immense capacity for joy and hope.
- Learning About Yourself/Learning to Adapt: I went to dinner with my friend who is a Licensed Massage therapist and works with patients who have autoimmune diseases. She listened to my story (my family’s story and the difficulties we were facing.) She paused and stated, “You want to be frustrated with a person with an autoimmune disease when you can’t plan anything or commit to anything with certainty, but you can’t be. It isn’t their fault because no-one can predict how and why and what may happen hour by hour. And they are the one’s who suffer with this daily. How frustrating it must be for them.” She captured a rare truth. Living with a person suffering with an autoimmune disease is an exploration into one’s self (a mirror of sorts): your motivation, your priorities, your definition of commitment and relationships, your worldview, your sense of humor, your selfishness and selflessness, your compassion and empathy or the lack-there-of, your faith and the importance faith in your daily life, your humility, your pursuit of virtue versus vice, and whether you have the courage to live in the world but not conform to the world.
Thank you for reading and your support!
St. Lidwina, patron saint of chronic pain and chronic illness, pray for us!