The Gift of Advocacy

         

         As a mother of a child with special needs, my life has been enriched. Never in the way I thought or anticipated. Heaven knows that before my sweet William was born into our family I had different ideas of what I envisioned for my whole-hearted life. As hard as this road has been, I can’t imagine how lost I would be without this choice opportunity to raise such a special child. Oprah Winfrey once said, “There is no greater gift you can give or receive than to honor your calling. It’s why you were born. And how you become most truly alive.” My William has illuminated the path of my calling. I never in a million years would have chosen this life for myself, and for that reason I’m grateful it chose me. Among the different callings I have discovered, one of my most rewarding roles has been that of an advocate.

Little William was born full-term and quickly whisked away by doctors who immediately tended to his pre-known heart condition which would require open-heart surgery a few months later. This heart defect is common in babies with Down syndrome, and he was diagnosed with this genetic disorder while in my womb at 20-weeks gestation. This boy would endure the next year of hospital visits, and continue with over 10 speciality doctors for the unforeseeable future. At 3-years-old, William was diagnosed with autism, and his public school education had to change tracks since his learning was better provided in an autism-based ABA classroom. Although the Down syndrome and autism don’t help, his inability to speak is more in due to his third diagnosis of apraxia. The life of an advocate has been at the forefront of my mind as I’ve battled with doctors, teachers, therapists, and administrators. Has it been grueling? Yes. Has it been exhausting? Yes. Have I made mistakes, felt exasperated and without hope? Absolutely. But with all the sleepless nights, not to mention the extra fine lines and wrinkles, I can confidently concur with Oprah that living my calling has helped me become truly alive.

What is it about the hat of advocacy that is so rewarding? For me it has been the bond and magnetic pull that my heart has formed with William. The last 7 years of his life I’ve dealt with denied requests interspersed with life-altering victories. But the irony has been that the joy of advocacy has had little to do with the outcome, and more to do with the rewarding relationship I continue to cultivate with William. Indeed I’ve found a direct correlation between my advocacy endeavors and the strength of my heart strings that are fettered to his. It’s hard to put in words, and also impossible to articulate, but those who have experienced similar journeys know and understand its beauty and power. I feel this is the foundation of advocacy, it’s beginning point and crucial start, as hearts and minds are weaved together in love. Indeed, it makes me feel truly alive.

I’ve often heard that those with disabilities have some type of super-human power. Those that are blind are known to have a keen sense of hearing. Those that are deaf have eagle-sharp eyes. It’s like our bodies recognize our deficiencies and somehow have a way to overcompensate our anatomical imperfections. So what is William’s super gift? To discern and dispense love. He knows quicker than the rest of us when a therapist comes over to just check the boxes. It’s actually quite comical. He doesn’t give them the time of day. He freaks out over the nurse who carelessly takes his blood pressure or doctor who doesn’t look him in the eye. But those specialists and friends who love their job and are smitten with sweet William find magic and synergy as they work together. In truth, I do not know who benefits more. And I believe that these people too have found their calling and what makes them feel alive.

I’ve learned that my success with advocacy has a direct correlation with how meticulous I’m able to discern William’s thoughts and feelings. I spend countless hours observing, watching, and searching for common threads as he responds in different settings. Maybe it’s because I study the different levels of his psyche, learning his motivations as well as his intentional or non-intentional responses. For example, on a daily basis William screams. It drives my husband and I crazy. It can be constant, and it can also be inconsistent. With each scream, I try to discern the source and/or motivation of his screams. Is it physical pain, emotional frustration, a form of negative communication, or a manipulative desire for attention? I’ve spent hours away from my family advocating to doctors for medical solutions, only to find later the crux of his screams were behaviorally attributed. Heaven help me. The opposite has also occurred. I’ve minimized and disciplined William’s screams out of belief they were behaviorally rooted, only to discover later that he was in physical pain, and actually needed medical attention. The sting of mommy guilt indefinitely ensues, and yet somehow I muster the strength and determination to wake up the next day and continue working. Thus I’ve learned that the best advocates have sealed their whole selves to the individual that needs saving. And it is here I finally feel authorized to speak in William’s behalf and thus receive the power to more fully advocate in his best interest.

Are you still reading? Have I lost you yet? I know this is deep, but it’s something that clearly I’ve thought long and hard about because I live it every day. Getting the empathy part right in my book is half the battle. Because for me, once I’m there, once I’ve tried my hardest to put myself in William’s shoes, I’ve found the natural byproduct has been an impression and/or vision in how to help him. It’s here I’m able to concoct out-of-the-box solutions, and/or draw simple conclusions. These thoughts are almost always backed with an energy and passion, an after burner which propels me forward. I’m grateful for this strength because after all, I also have three other young children at home. :)  Sometimes this process is quick and easy, and other times it takes years of trial and error. But regardless, this process has always been worth the wrestle. I echo at the words of Hellen Keller, “The best and most beautiful things in the world cannot be seen or even touched, but felt in the heart.” Amen Hellen Keller! Amen.

Top Lessons Learned through raising a child with DS-ASD (Down syndrome- Autism Disorder)

World Down syndrome day 2018

1. Bravery comes not by climbing the tallest mountain, but by choosing patience daily. 

2. One of the best feelings is knowing your presence and absence both mean something to someone.

3. "There is nothing in nature that blooms all year long, so don't expect yourself to do so either." -Immanuel Kant 

4. Keep your eyes open, and hearts full of hope. Better days are always ahead. 

 5. "Don't wait for someone to bring you flowers. Plant your own garden and decorate your own soul." -Mario Quintana

6. If you cannot celebrate the little things, 
you can never appreciate the big things.

7. "Trust the wait. Embrace the uncertainty. Enjoy the beauty of becoming. When nothing is certain, anything is possible." -Mandy Hale

8. It's not enough to be friendly. 
You have to be a friend.
 -RJ Palacio, "Wonder" 

9.  When given the choice to be right or be kind, choose kind. -Wayne W. Dwyer, “Wonder”

10. Unconditional acceptance is as important as unconditional love. -Vicky Sherwood

11. Busyness is an illness of the spirit -Eugene Peterson

12. "The best and most beautiful things in the world cannot be seen or even touched, but felt in the heart." -Hellen Keller

From World Down syndrome Day 2017

Top TEN things I've learned from raising a child with Down Syndrome:

1. Happiness isn't an arrival. It is a state of being. It's jazz hands on a rainy day. 🤗

2. Success is measured by how many times you haven't given up. 

3. There is power and purpose in being different AND being united. 

4. We need more cheerleaders. 

5. We all have something. We all struggle. Some with outward blemishes, others are buried deep. 

Own it. Carry it. Surrender to it. Acknowledge it. Embrace it. Don't pretend it doesn't exist. You'll soon discover you're not the only one who struggles with it. And people will love you more for it. I know, it sounds crazy - it's soooo true. 

6. If you have a horrible, terrible, no-good, very bad day, you can still handout smiles. I have NOT achieved this status, -but William and my mother have. 

7. People say stupid things about William but it is generally with the best of intentions. 

8. Patience doesn't mean just waiting. It means waiting with a smile. (Must work on this). 

9. The highest form of love is called sacrifice. 

10. And I have to add #11 -I know I married my match through raising William. He's my biggest cheerleader and support. Thank heavens for DTM. (Dan-the-man 😂)

Holiness vs. Holier than thou

From a Sacrament meeting talk given on 3/11/18

Holiness. I’m grateful for the opportunity I’ve had to study this topic. For better or worse, my mind struggles to understand abstract concepts and principles, and the word holiness has been no exception. I’m more comfortable with topics that systematically, and linearly fit into the confined box of my limited understanding. In efforts to understand what holiness means, I’ve asked friend’s and family, “what does holiness mean to you?” As soon as those words have left my lips, I’ve been caught off guard with the hypocrisy that it portrays. Like so many other things in the gospel of Jesus Christ, it’s not about what holiness means to me, it’s about what holiness means to God. If he were here, right now, standing beside me, how would he define holiness?

Just this week, I finished reading the book “The Christ who Heals” by Terryl Givens, an LDS Professor of Literature and Religion at the University of Richmond, and also a former bishop of mine who I hold in the highest regard. Part of his book discusses the difficulty translators of the Bible encountered, and the limitations they met as they took Greek words and translated them into english. One word in particular from the King James Bible was the word “save” as translated from the Greek word “sodzo.” And he who saves is written, “soter” based on the same word. But when Luke uses this identical term “sodzo” it is used to describe Jesus’ act of healing the blind man. Mark and Matthew also use this word “sodzo” in reference to healing the girl from a plague as well as healing the woman with the issue of blood. As Terryl Givens puts it “rather than render the Messiah’s title of soter as Savior, we could with equal linguistic justification call him Jesus Christ, son of God, and Healer of the world. In substituting this virtue, healing signals the beginning of a glorious journey now unfolding, while saving implies it’s end.” He goes on, “we Latter-day Saints are still too reliant upon the assumptions, the implications, and especially the language that generations of well-intentioned but misguided theologians and Reformers alike introduced into the domain of religious thought.” (pg. 3)

So I’m brought back to my initial question. What is holiness and if Christ were here today, how would he describe it? Is it a feeling? Is it a place? Is it a person? President James E. Faust said that holiness is a standard of righteousness. Elder D. Todd Christofferson said that “If we yearn to dwell in Christ and have Him dwell in us, then holiness is what we seek.” The only person in the scriptures that is defined as possessing holiness is God himself. The Bible dictionary and LDS guide to the scriptures say holiness is spiritual and moral perfection, it indicates the intent and purity of a person’s heart, and is the mind of godliness. 

In short, and in ways my limited mind can understand, holiness is the crowning jewel, the all encompassing word that defines all of what God did, who he is, and what he does. In one word, it typifies his omniscience, omnipotence, omnipresence, and a new word I discovered, his omnibenevloence (which is all good, loving and kind traits). It is no wonder that he chooses to compare and associate himself to light, for the presence of true natural and white light (as we learn from physics) is the combination of all colors of the rainbow, and all wavelengths harmoniously married together. Holiness is light, and it is a grand summation of the colors of his perfect character and moral goodness.

How do we attempt at being holy? I believe the precursor and foundation of holiness lies in our ability to receive God’s blessings. In preparing this talk a few weeks ago, I was in the middle of writing an article that was to be published in a non-denominational christian blog about my struggles as a mother in raising a child with special needs, and how the definition of a blessing has changed my life. While I understood and believed that “when we obtain any blessing from God, it is by obedience to that law upon which it is predicated” (D&C 130:21), I wondered where all my blessings were during the last 6 years of my life. Our sweet William was born sick, and spent the better portion of his first year of life in the hospital. He endured open-heart surgery, 3 1/2 years of acid refulx, two types of feeing tubes, 4 rounds of ear tubes, 3 rounds of pneumonia, RSV, rare skin diseases, unstable vertebrae, bad eyes, bad ankles, and then recently diagnosed with apraxia and autsim. Although far from perfect, I’ve always made an honest attempt towards obedience, but felt neglected in my lack of divine rescue or help. A quick social media search of “#soblessed” comes up with over 2 million images of gorgeous hair, elaborate vacations, healthy babies, fit bodies, or immaculate homes. Is this how God endow’s his blessings of holiness? Through popularity, prominence and providence? My gut told me no, and I began to be fixated on the word blessings as I began studying the scriptures for my answer. 

I first looked up the word “blessing” in the topical guide, bible dictionary and index, and read every verse and scriptural passage with that word contained in it. If I didn’t understand the historical or scriptural context, I pulled out Sunday school manuals, searched conference talks, perused Jewish and various Christian perspectives, and again, tried to pull all this information into the limited confines of my mind. After this thorough investigation into “blessings” I decided to do the same thing with all the “see also” words with which the topical guide, bible dictionary and index associated blessings. Such words included miracles, tender mercies, gifts, and talents. After reading every scripture and studying all I could about those words I began a list of all the laws of heaven that exist in scriptures, and diagrammed all the blessings that fell under obedience to each and every law. While I own my manic and hyper-focus ways, being on such a quest in attempts to understand the mind of God and how he worked was as high of a privilege and opportunity as any. In addition, the peace that my study provided my mind and heart, alleviated part of the stress I was enduring in my personal crucible of mortality.

In my study of blessings, I stumbled upon the Beatitudes in the Sermon on the Mount. There’s a footnote in my Bible to Matthew 5:3 that reads, “The Latin beatus is the basis of the English ‘beatitude’ meaning ‘to be fortunate,’ ‘to be happy,’ or ‘to be blessed.’” Here the Lord, beautifully describes his definition of blessings.

Blessed are the poor in spirit: for theirs is the kingdom of heaven. Blessed are they that mourn: for they shall be comforted. Blessed are the meek: for they shall inherit the earth. Blessed are they which do hunger and thirst after righteousness: for they shall be filled. Blessed are the merciful: for they shall obtain mercy. Blessed are the pure in heart: for they shall see God. Blessed are the peacemakers: for they shall be called the children of God. (Matt 5: 3-10)

Here we learn, that blessings from heaven are the very seeds of his holiness, and characterize his divine nature. Blessings are about becoming more humble, more meek, more merciful, more pure in heart, more forgiving, more empathetic and more as He is. (Matt 5:48) In fact, every law, covenant, ordinance, and commandment serve this same purpose -to help us become more like the Holy One of Israel. Blessings are about being honest, true, chaste, benevolent and virtuous, and when ratified by the Holy Ghost, brings a change in our very natures, and helps us become more fit for the kingdom of God. 

I found it comforting that the Lord here doesn’t associate health as blessings. My whole house could be burning down, and yet it takes no hold on my blessings or favor with God. The Lord also doesn’t associate marital status or even children in this life with blessings. Thank heavens, for how many wonderful people live without marriage, or children through no fault of their own? Surely the number of miscarriages women have faced speak nothing of God’s blessings toward them. Truly following our moral compass, the commandments, and covenants brings about the blessings and holiness of God. This understanding of blessings levels the playing field for all of God’s children, no matter their race, culture, gender or nationality. It doesn’t only make blessings available to members of the church of Jesus christ who have made the highest covenants revealed to us in the holy temples, but also the atheist, heathen, or Chinese woman who never hears Christ’s name.  (2Ne 26:24-33). As every child born into this world receives the light of Christ, each synonymously and simultaneously receives a portion of the laws of heaven, as mandated by their conscience, or moral compass.  Mornoni says that (7:16) that “the Spirit of Christ is given to every man that he may know good from evil. And that which is of God inviteth and enticeth to good continually.” God’s holiness can be felt all over the world, whether in China or Chicago, India or Indonesia, and as these people are obedient to the laws of heaven they have received they (D&C 50:24) “receiveth light, and continueth in God, receiveth more light; and that light groweth brighter and brighter until the perfect day.” Truly bad things happen to good people, but to loose favor with God comes only one way, and that is sin through deliberate disobedience.

As the understanding of the beatitudes filled my heart and soul, I realized that I had been acting childish in my prayers to God. Just as I’ve seen my sons ungratefully receive a generous gift from a friend or neighbor, I had been acting the same way towards God’s divine favors. Sometimes I’ve begged for a miracles, and I’ve been given a tender mercy. Other times I’ve pled for a talent, and been unsatisfied when he’s given me a gift. This treasure trove of divine favors includes, but is not limited to, miracles, tender mercies, gifts, talents and blessings. For sake of time, I’d like to focus on the gems talents and gifts and discuss how they help us live the commandment to “be ye therefore holy, even as I the Lord am holy,” (Leviticus 20:26).

The beatitude blessings of meekness, love, mercy and compassion, brings us together, but as I’ve studied the divine favor of talents, I’ve learned that they differentiate us, and create inequality within our world, communities, schools and even families. Talents, if left unchecked, creates a “holier than thou” attitude instead of a spirit of holiness.

The parable of the talents as described in Matthew tells of a man traveling into a far country, and delivered unto his own servants some of his goods. The Lord divvied up talents “according to his several ability.” One servant he gave five, another he gave two, and another he gave one. The servant who had five talents multiplied them and made five more, the one with two talents he multiplied with two more, and the servant with one, who was lazy and slothful, and who buried his deep into the earth, the lord not only chastised but gave the talent to another. (Matt 25:14-30)

While I do not understand why the Lord gave differing amounts of talents to his servants, I find comfort in knowing that these were not blessings. The chief principle taught here was the law of the harvest -we reap what we sow. You get out what you put in. Those that use their talents by the sweat of their brow, learn the principles of hard work, diligence and dedication. They reap the rewards -both for better or worse. My husband and I saw the musical play Hamilton, written and scored by Lin Manuel Miranda. I’m nearly done reading Ron Chernow’s fascinating biography of Alexander Hamilton, and our son William in enamored with the hip-hop melodies from this broadway musical. I can’t figure out with which character, Hamilton or Lin Manuel, I’m most inspired by. Both figures fought tooth and nail, studied, developed and shared talents that we all benefit from. But again, it is important to note, talents are different from blessings. Success, fame and fortune can be used as a platform for better or worse… and I find it dangerous to synonymously claim that any innately inherited talent, or product from hard work, is somehow a sign of divine favor. The seeds of talents as well as the fruits of talents can be knowledge, expertise in field, wealth, attractive bodies, and/or anything that sets us apart from our neighbor. Talents are what make life beautiful and interesting, what gives us our individuality and the feeling of being special. But blessings are predicated on obedience to laws of heaven, and have everything to do with holiness, our hearts, humility, and meekness. “For what is a man profited, if he shall gain the whole world, and lose his own soul?” (Matthew 16:23, 26). Blessings do not foster a holier than thou mentality, they foster a holy and loving community. 

The scriptures are replete of examples of talented individuals, like King Noah, who without blessings, became holier than thou. Joseph of Egypt was a talented individual, he was the favorite child of Jacob and Rebecca, could interpret dreams, had a coat of many colors and because of his talents, his brothers were threatened and jealous of him. Talents or birthrights in those days indicated more responsibility than anything, but I wonder if these brothers understood that blessings were the lateral ascension toward heaven then maybe they wouldn’t have been so jealous of Joseph. Cain slew Abel over the jealousy of his talents, and even the perfect and sinless son of God was ridiculed by others who I feel felt threatened and jealous by his talents.

This difficult dichotomy of talents and blessings can be difficult to balance, but luckily the Lord has not left us alone. The Lord offers us another divine favor, the gem of gifts.

Webster’s dictionary defines gift as “something voluntarily transferred by one person to another without compensation.” I believe such gifts include, but are not limited to agency, forgiveness, mercy and grace for they cannot be repaid. Maybe even children in this life would fall under this category. In addition and as I was preparing this talk on holiness, I discovered a pattern in the scriptures associated with the word holy. I don’t think the Lord mixes his words and all “holy” words listed in the scriptures are gifts that our Good Shepherd gives to us as aides and help along our life’s journey. These holy gifts also are an integral part of harmoniously balancing our talents and blessings together. They include but are not limited to, the holy sabbath, the holy sacrament, the holy temple, the holy priesthood, the holy scriptures, and the holy ghost. The other night while I was going over my talk with my husband he said, well, the holy temple seems more like it falls under the category of a blessing. Like Elder David A. Bednar discussed in his trilogy of books discussing the difference between doctrines, principles and applications, not all things in the gospel fall neatly in one of these categories. And I do not profess my ideas of gems of divine favor all fall neatly under each category. But I do see patterns that have brought me peace and understanding.

 divine favor all fall neatly under each category. But I do see patterns that have brought me peace and understanding.

Last week in our scriptures study, my son Cooper read this scriptural account of Jesus’ visit to the Americas, as detailed in the Book of Mormon. The following scripture jumped out at me, and I believe it harmoniously weaves in the light of holiness, talents and blessings and our purpose for seeking them.

3 Nephi 12:14-16 says “Verily, verily, I say unto you, I give unto you to be the light of this people. A city that is set on a hill cannot be hid. Behold, do men light a candle and put it under a bushel? Nay, but on a candlestick, and it giveth light to all that are in the house; Therefore let your light so shine before this people, that they may see your good works and glorify your father who is in heaven.”

President Hinkley said it this way, “It is not enough just to be good. We must be good for something. We must contribute good to the world. The world must be a better place for our presence. And the good that is in us must be spread to others.”

In this last and final dispensation, and in preparation for the second coming of the savior, let us harmoniously utilize all the gems of divine favors with which the Lord has endowed. In so doing, it is my testimony that we will become more acquainted with the man of holiness, and a combination of our talents and blessings collectively brings about greater and holier purposes.

Divine Favors

STORY ORIGINALLY POSTED BY WWW.THESMALLSEED.COM

STORY ORIGINALLY POSTED BY WWW.THESMALLSEED.COM on 2/27/18

The last five years of my life have been a never-ending refiner’s fire, full of disappointment, shock, devastation and grief. I’ve prayed to see the Lord’s blessing of rescue, but in His wisdom He’s chosen to reveal himself in other ways. In fact, I’ve learned that God has a treasure chest full of different divine favors which He bestows in His own time, His own way and according to His own will. I’ve found that this chest of divine favors includes, but is not limited to, gems of tender mercies, miracles, gifts, talents and blessings. I’ve discovered that each gem holds value and purpose for Him. 

Just as I’ve seen my own children ungratefully receive a kind gift from a neighbor or friend, part of my personal and spiritual struggle resulted because I’ve acted similarly towards God’s divine favors. Sometimes I beg for a miracle, and I’m granted a tender mercy. Other times I’ve seen a tender mercy, but really wanted a talent. As I have come to understand what I have called, “His gems of divine favors” I’ve seen His hand more abundantly in my life. Such displays of love and involvement have given me comforting assurances, gifts of empowerment, and motivation to continue in obedience.

Part of my journey begins over six years ago when my husband and I were looking to move. We researched and prayed about a location, found a house that felt right, and all the pieces seamlessly fell into place. Shortly after moving in, we became pregnant with our second son, and discovered at his level 2 ultrasound that he had a hole in his heart, would require open-heart surgery after birth, and had the genetic disorder trisomy 21 or Down syndrome. As my husband and I devastatingly tried to recalibrate our expectations for life, we began praying for miracles. We wanted William’s heart to be healed, or that one morning we’d wake up from our terrible nightmare. 

Even though the miracles we prayed for did not come, the tender mercies of the Lord were beautifully apparent. They provided us assurances and comfort we needed as we timidly stepped into the special needs world as parents. 

While those miracles were never given, we saw overwhelming displays of tender mercies, which David Bednar describes as  “the very personal and individualized blessings, strength, protection, assurances, guidance, loving-kindnesses, consolation, support, and spiritual gifts which we receive from and because of and through the Lord Jesus Christ.” These tender mercies or “divine coincidences” were undeniable examples of the Lord’s involvement and comfort in our journey. Was it a coincidence that our new neighbor was a neonatologist who practiced in the same NICU where William would spend his first 10 weeks of life? Was it a coincidence that one week before our ultrasound, we met a new friend who later became the very pediatric-cardio-anesthesiologist that William needed during his open-heart surgery? Was it a coincidence that my husband’s co-worker had shared sweet pictures and inspiring stories about his son with Down syndrome twelve months prior to William’s diagnosis? Was it a coincidence that our new school district happened to have one of the best special-needs preschools in the country and was a stone’s throw away from our home? It was not a coincidence then, and it isn’t now. Even though the miracles we prayed for did not come, the tender mercies of the Lord were beautifully apparent. They provided us assurances and comfort we needed as we timidly stepped into the special-needs world as parents. 

A different gem of divine favor was thrown my way shortly after William was born. This gem came in the form of a gift. Webster’s Dictionary defines a gift as “something voluntarily transferred by one person to another without compensation.” I believe such gifts include, but are not limited to agency, forgiveness, mercy and grace for they cannot be repaid. After William’s tumultuous 10 weeks in the NICU the Lord offered me His gift of grace, or in other words, His enabling power to assist me in doing things I otherwise could not have done. Such a gift brought by the Holy Spirit was bestowed shortly after William’s nurse informed me that his hospital discharge was contingent on my ability to accurately place his feeding tube. If I couldn’t correctly put the tube up his nose, down his throat, into his stomach, tape the tube to his cheek, and check the placement with a stethoscope—all during his desperate screams—he was not permitted to come home. I have a phobia of needles, and faint at the sight of blood. This nurse was asking me to do the impossible. It took days before I could watch the procedure with both eyes open, but I reluctantly took a deep breath, prayed for God’s grace, and in His strength I eventually figured it out. 

William hated his feeding tube. Once home and to my horror, he’d pull it out daily, subsequently ripping off his cheek tape and exposing his already raw flesh underneath. A few months after his open heart surgery, it became apparent he’d need a G-tube, a more permanent feeding tube which was later surgically placed directly into his stomach. Life for William did not get more comfortable or easy, and the miracles of health we prayed for were not realized. The new tube aggravated his acid reflux, his painful screams became more constant, and the desperation we all felt was overwhelming. Nightly his screams awoke my husband and I, requiring a painful procedure of venting air out of William’s tummy. We’d attach a large syringe to the feeding tube in his stomach, and watch the trapped air bubble out of the syringe like the spout from a whale’s blowhole. The harder he screamed, the quicker and more forceful the air would explode out. I don’t share these experiences for pity, but rather to illustrate like Paul, that God’s “grace is sufficient for thee; for my strength is made perfect in weakness” (2 Corinthians 12:9). William’s battle with a feeding tube lasted three and a half years, and I came out of that struggle with the absolute surety that God’s gift of grace enabled me and my husband to do things for William that would have otherwise been impossible.

BY ELIZABETH MOON

My quest to obtain God’s gem of a blessing was the divine favor I struggled most to understand. A quick social media search of “#soblessed”displays over 2 million images depicting wonderful hair, adorable pets, elaborate vacations, healthy babies, and all things that facilitate the ease of life. I also associated miracles and health with blessings, and had been taught all my life that blessings came through obedience to God’s commandments (D&C 130:21). So when William was born sick, when he needed a feeding tube, years of acid reflux, four rounds of ear tubes, three rounds of pneumonia, RSV, rare skin infections, unstable vertebrae, bad eyes, and even recently diagnosed with apraxia and autism, I honestly wondered where my blessings were and what I was doing wrong. According to the world’s definition of the #soblessed, William was being cursed and left like Job. I chose to doubt my doubts, hold onto my faith, and after months of study and prayer, I learned that my definition of a blessing was different than the Lord’s.

The Savior defines blessings in His Beatitudes in the Sermon on the Mount. There’s a footnote in my Bible to Matthew 5:3 that reads, “The Latin beatus is the basis of the English ‘beatitude’ meaning ‘to be fortunate,’ ‘to be happy,’ or ‘to be blessed.’” I love that the blessings with which He chooses to endow are seeds of His own Christlike character.

BLESSED ARE THE POOR IN SPIRIT: FOR THEIRS IS THE KINGDOM OF HEAVEN. BLESSED ARE THEY THAT MOURN: FOR THEY SHALL BE COMFORTED. BLESSED ARE THE MEEK: FOR THEY SHALL INHERIT THE EARTH. BLESSED ARE THEY WHICH DO HUNGER AND THIRST AFTER RIGHTEOUSNESS: FOR THEY SHALL BE FILLED. BLESSED ARE THE MERCIFUL: FOR THEY SHALL OBTAIN MERCY. BLESSED ARE THE PURE IN HEART: FOR THEY SHALL SEE GOD. BLESSED ARE THE PEACEMAKERS: FOR THEY SHALL BE CALLED THE CHILDREN OF GOD.
— MATTHEW 5: 3-10

Admittedly, I still cringe when I hear someone say that they were “so blessed to have a healthy baby” but this is now my problem and not theirs. I’ve got to let it go. From the Lord’s Beatitudes, He doesn’t associate health as blessing. The Lord also doesn’t associate marital status or even children in this life with blessings. Thank heavens, for how many wonderful people live without health, marriage, or children through no fault of their own? The Lord associates His blessings with His Beatitude virtues and His divine character. Blessings are about becoming more humble, more meek, more merciful, more pure in heart, more forgiving, more empathetic, and more as He is (Matthew 5:48). I feel all my Christian worship—the ordinances, promises and sacrifices that He asks of me—all point to becoming more Christlike. Surely an acquisition of such divine traits is the precursor to solving all the world’s problems. These blessings, unlike those listed on social media, level the playing field for all of God’s children, no matter their circumstance, race, nationality or culture. These blessings typify His holiness, and embody the place where He lives. These blessings are as numerous as the stars in heaven and the sands of the sea (Genesis 22:17), and like Abraham’s blessings are tied to, contingent with, and predicated upon faithfulness to our moral compass, commandments, and covenants.

BY REANNA NAGLE

BY REANNA NAGLE

I feel William is a gift from God, his life is a living miracle, and God’s blessings come as we try to “walk in His ways”(Psalms 128:1). Although life continues to throw curve balls of instability and sickness, I’ve learned that God is good and involved in the details of our lives. He is the Giver of all good gifts, the High Priest of good things to come and the Prince of Peace. Through the majesty of His infinite atonement, and at a later day, I feel His treasure chest of divine favors will be opened and enjoyed by all who love and seek to follow Him.

Come walk with us...

This world that we live in scares me. There is so much hate towards what makes us each different and unique. You name the issue. What happened in Charlottesville a few weeks ago kept me up at night. Iceland touting their near extermination of Down syndrome makes me weep. Religion, politics, race, parenting, sexuality, gender rivalry, or something as small as how we choose to spend our time and money not only separates us, but has created crevices of hate in our relationships. And I get it. Oh, I totally get it. I have my own opinions and struggles in allowing what's different into my life. But in the last four years, or since we welcomed our sweet William into our family, I have felt this need, this pull, to raise my voice in sharing, and even CELEBRATING what makes us different. Could it even be possible for us to UNITE in our DIFFERENCES? I don't know. But I want to try. I owe it to myself and my family. I cannot control anyone else, but I can still choose to try for myself. I recognize this message goes against the grain. It requires us to stretch outside our comfort zone, offer the benefit of the doubt, swallow our pride, and to reach out in love. We are all wired different. And it's not only okay, it's necessary, beautiful and oh so rewarding. I find our differences reasons why we need each other in this excruciatingly difficult journey we call life. 

"We are each of us angels with only one wing, and we can only fly by embracing one another."Luciano De Crescenzo

I love that quote. It has become one of my life mottos. And there is no one who has taught me that lesson more than sweet William. And so I invite you, come CELEBRATE what makes us DIFFERENT. Let's exchange our hate posters with signs of encouragement. Let's drop our racist chants and instead offer cheerleading screams of motivation. Let's replace our hard hearts with soft ones. Let's offer listening ears instead of "I'm too busy" conversations. I won't be offended if you don't donate money. And I won't be hurt if you can't walk with us. But I do hope we can all soften our hearts a little more, acknowledge we all have broken wings a little more, and daily strive to come together in our differences a little more, so we can embrace each other and fly.

Want to walk with us?

Come walk with us at the Best Buddies Friendship Walk on October 21st, at 8am, at the Washington Monument on the National Mall.

You can walk with my family for FREE.

You can also donate online if you wish.

To register to walk, donate and more info, go here: https://www.bestbuddiesfriendshipwalk.org/CapitalRegion/supporting/#imin&donate/760331/14236&registration/14236

And why do I love Best Buddies? Because it UNITES and INCLUDES ALL TYPES of intellectually disabled people, not just Down Syndrome and Autism.