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Community Contributors
Overcoming My Mental Health Crisis
Please share your parenting or caregiving story with us.
I am blessed with two precious children with differing rare genetic disorders. My youngest, my daughter, Bethany Grace (age 13), was born with Cri du Chat Syndrome and severe disabilities and medical fragility. When Bethany Grace was little, I journeyed through a mental health decline and crisis of faith. The caregiving stress felt almost unbearable. I became so depressed, I even made a serious suicide attempt. I spent years in therapy and learning how to care for myself and have risen up to renewed hope and passion for life and helping other disability parents strengthen their faith, mental health, and marriages.
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What has been the HARDEST part of raising or caring for someone with a disability?
My journey through chronic grief has been the most difficult part of caring for my children.
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What has been the most JOYOUS part of raising or caring for someone with a disability?
Bethany Grace has taught me what is most important in life: simple gratitude and joy for each new day. I am grateful for my new perspective on life and for the fun we have together each day.
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What advice would you give someone who is encountering #LifeUnexpected (raising or caring for an individual with a disability)?
Look for joyful moments each day for which you can be grateful. Try to embrace your present life and not compare yours to others'. Validate how you feel and your grief experience.
My niece Zoe is a miracle. There’s just no way around that. After failed IVF attempts and a heartbreaking loss, my sister found out she was pregnant with Zoe. Shortly after she found out, she was told Zoe had a rare condition called hydrops fetalis that gave a very small chance of survival to term and even less after birth. Yet, from the very first visit I saw little Zoe move on that ultrasound I knew she was a fighter. She gets that from her mama. My sister has always been brave and adventurous, and she never backs down from a challenge.
Zoe is a Miracle
by Dr. Annika Mandujano
Every challenge that Zoe has faced, even in my sister’s belly, Zoe has faced it head on and surpassed everybody’s limited expectations. Her tenacity is evident in everything she does. She has Down syndrome and Auditory Neuropathy Spectrum Disorder which means she has varying degrees of hearing impairment. None of this stops her from lighting up a room with one smile. She holds the hearts of her grandparents, her parents, her aunts, uncles, cousins and pretty much everyone who meets her. She LOVES Cocomelon almost as much as she loves her beautiful mama. She is learning to sign, along with the rest of the family. And we are looking forward to celebrating her second birthday next month!
As a physician and being a small part of this journey with my sister, I never realized just how much we can focus on what someone can’t or won’t be able to do. Zoe has taught me to see everything we can be, to believe in it, to have joy and celebrate it. I will never take that for granted. Today, I celebrate all the miracles in my life, specifically one named Zoe.
"You probably have heard about the hardship families needing in-home care have been facing during the pandemic. I asked Mary Ann Niestadt Struxness, a friend from Robert’s early school days, to share what she has been going through during the current dilemma facing many families caring for a child with disabilities." - Juli
Yes, for the most part, we are always in search of a caregiver for my son. It seems just as one is hired and is a good match for my son and family, they leave for a better employment opportunity (more money, health benefits, retirement options, etc.). It was hard to find a caregiver in the past, now it is almost impossible.
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Always in search of a caregiver?
By: Mary Ann Niestadt Struxness
My son has gone as long as four months without help and it was a hindrance to his daily life and being active in our community. This time my son is a month and a half without a caregiver, and no one is interested in working.
I have advertised on several websites, spending close to $400 for all the job postings to be active. I have interviewed applicants by phone recently and scheduled an in-person interview. After arriving at the designated time and place, the applicant was a no show and did not respond to phone calls or text messages. My son and I were very disappointed. Where is the common courtesy to let an employer know you are no longer interested?
It does not help that the program my son has been in since he was nine years old, refuses to increase the rate of pay. $12 an hour for caregiving an individual is not enticing. So through my single parent personal finances I supplement the hourly wage to $15. Even at that rate, people are hoping to earn more money with little experience and no sincere commitment to this rewarding job.
My family has survived this situation many, many times in the past. I pray each time we go through this process asking for the best applicant that is a good fit for my son. Of course, I know that all prayers are answered in God’s time and the way He sees fit. It is through faith that I am able to keep going. My faith in Him that He will provide for us and see us through this difficult task.
When you see "Now Hiring" signs everywhere, keep in mind that a family with a special needs member is probably also looking to hire. Pray for everyone who needs to hire, and for the hearts of people out there that would apply to realize that serving others is the best job you can get and the most rewarding.
Beauty Out of Ashes
By: Veronica Jaime
Hadara Chael Jaime was born December 24, 2016, and passed away December 24, 2016. Her first name means the light and glory of God, and her middle name means woman of valor. Hadara is our second baby girl, our eight-month, still-born baby, our precious daughter.
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Our pregnancy was very similar to our first pregnancy. Nothing that would alarm us or have us concerned or worried. Toward the 6-month mark, my blood pressure would fluctuate slightly on occasion.
Our doctor didn’t express a severe concern, nor was I recommended or advised to see a high-risk doctor. Hadara’s sonograms and measurements went as expected. I continued to partake in my daily home, work, church, and dance activities. I felt beautiful and excited in anticipation of our baby girl arriving. While she was in my belly, we sang to her, prayed over her, and gave her tons of hugs and kisses.
December 23, 2016 my mucus plug fell in the middle of the night. I thought, okay, Hadara is arriving early, she is ready to reveal herself to the world. I called my doctor and I was advised to wait until my contractions were more consistent and closer before we made our way to the hospital. I was in pain all night long and told David, “Let’s go to the hospital.” We left early in the morning, leaving Chana with dear friends on Saturday, December 24, 2016. The day that we would be forever changed.
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The car drive to the hospital was the longest, most awkward drive of my life. I was concentrating on positive thoughts, prayers, and intentional deep breaths while speaking with my husband and trying to have a normal conversation, but something I discerned deep down was off. I was lost, confused, and scared. The nurse came into the room asking various questions and we robotically answered. We just needed to know that our baby was okay. The nurse lifted my shirt and rubbed the warm gel on my belly and she started the normal process of listening for our baby girl’s heartbeat. She was quiet. She was taking too long. She didn’t say a word for what seemed like an eternity. I stared into David’s eyes not speaking a word, but we were definitely speaking to each other, a language without words. The nurse finally said five words, words we never thought we would hear, “I can’t find a heartbeat.” Time stopped. My mind was blank. David and I kept looking at each other in disbelief. Tears fell. Our hearts were shattered into millions of pieces. The first words exploded out of my mouth, “Rush me into an operating room now! Cut me open and get her out! We need to resuscitate her! Let’s go!” The nurse calmly responded, “You will have to deliver her the way you delivered your first baby.” “Wait. What!?” I was so confused. “How are we going to save her with this process?” I was trying my best to allow my mind to comprehend reality without losing mental control.
I asked David to call our Pastors immediately. “Get them on the phone now!”
That was the point when my dad walked in to check on us. We stayed calm as they wheeled me away to a delivery room. I told my dad, “It’s all going to be okay.” While being wheeled into the room I was trying to convince myself that it was going to be okay.
The nurse helped me into the bed and they started the normal delivery process with what was not a normal situation. David and I had to make quick decisions that we weren’t prepared for. We stayed strong together, we hugged, kissed, held hands, cried, and expressed our love to each other. We had no idea what was really going on. In my mind I was thinking she would live, I was a desperate mom longing to carry my healthy, breathing child. I went through the motions and followed every step and recommendation to deliver our Hadara.
The nurses prepared to administer Pitocin and the epidural. I couldn’t have done it if my husband, parents, mother-in-law, and my pastors were not there. My beautiful spiritual mother held my hand and looked at me with a mother’s love that I will forever cherish. Her strength in her action of holding my hand, her words (that I will keep private), and her prayers kept me strong.
Please hear me, despite the outcome, God was very present in every step we made that day and He continues to be. How can I say that you may ask? There is a scripture in Philippians 4:7 that says He will give you a peace that surpasses all understanding and will guard your hearts and minds in Christ Jesus. I lived, breathed, and encountered that scripture in a deeper experience than I ever had. I let go and let God, very scared, but I chose to trust. The nurse saw the love of God displayed while tending to me and my family. She sat at my bedside and asked me questions about my faith. I was able to share God’s love with her. I continued to rest and wait, although I wasn’t really certain what I was expecting. Another dear friend, that I call my sister, sat at my bedside, she shared love and prayed with me. God was giving me just what and who I needed every moment.
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I tried to fall asleep and rest as we waited. I layed on my side and started to feel a slight pain, it came quicker and sharper. I called my husband to check on me, he lifted the blanket and told me he would go call the nurse. I felt one last intense pain in my body and when my husband and the nurse returned I had already given birth to our Hadara at 8:32 pm. They gave her to me to hold, still in my very desperate state, I breathed on her and called her name. Yes, this sounds crazy and maybe a bit looney, but I was an anguished mom willing to do anything for my baby. Her eyes remained closed. I knew then that she was gone. I held her tiny, purple, brittle, and less than 3 pound baby body. I held her, kissed her, and embraced her with every fiber of my being.
Leaving the hospital and being wheeled to our car with no baby has been one of the toughest days of our lives. As we drove home, we listened to the song “For a Moment” by Hillsong Worship and watched our church service on Livestream. We witnessed our pastor share with our church family that our daughter had passed. In that very moment, you could hear a pin drop. We are extremely close to our church family and their hearts hurt with ours. That is when I finally cried. I sobbed and wept. Upon arriving home, we dug deep to have the discussion with Chana that Hadara went to heaven. Chana is one of the strongest little girls I have ever met.
Christmas Day was the next day, I sat on my couch the entire day but had to muster up the strength to celebrate and embrace our family. We had a very intimate family gathering to celebrate the birth of Jesus. The love that surrounded us from family, friends, and our church family carried us through.
The cause of her passing was never made clear. Her death certificate states hypertension and her autopsy states Pseudoknot or false knot in her umbilical cord. We aren’t aware which diagnosis is true. We still have many unanswered questions and will always wonder, what if?
We honored Hadara with a beautiful graveside service. My husband and I both expressed our thoughts and love. We had two beautiful songs sung by our dear brother and our pastor facilitated the service. We received love from all of our family and friends and embraced them. We didn’t want anything except our baby girl, but God knew what we needed to get through one of the hardest seasons in our lives. David and I remain close and communicate often as we decided that we will not fall or grow apart. It hasn't been easy and we still have rough days, but we are happy, have peace, and are very much in love. Chana is now nine years old. She vividly remembers us being pregnant and not coming home with her baby sister. She talks about Hadara quite often, cries and misses her, and also expresses her love for her. It’s so beautiful witnessing her inner strength and pure heart.
This year, Hadara would have been five on December 24th. Since then, we have had our rainbow baby, Sariah who is now three years old. God is still God and we trust, honor, and love Him. He knows. We will continue to be a strong family together in faith, trusting that all things work out for our good. As God continues to reveal His word and the beauty out of ashes we will keep our trust in Him.
Invisible Disability Awareness Week 2021
By Sarah Parrigin
My name is Sarah. I’m a poet, businesswoman, mother, wife, sister and friend; I’m also a survivor of severe autoimmune diseases. Over the past two years, my symptoms have slowly eaten away at my ability to live a “normal” daily life. You would never know it by just looking at me or by meeting me on the street, but I spend most days struggling to complete the basic tasks of daily living. My life and the life of my family have forever been changed by my invisible disability, and there are people all over the world living with many of the same challenges.
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​The Invisible Disability Project defines Invisible Disability as: any physical, mental, or emotional impairment that goes largely unnoticed.
An invisible disability can include, but is not limited to: cognitive impairment and brain injury; the autism spectrum; chronic illnesses like multiple sclerosis, chronic fatigue, chronic pain, and fibromyalgia; d/Deaf and/or hard of hearing; blindness and/or low vision; anxiety, depression, PTSD, and many more. Further, as the body is always changing, disability and chronic illness may be unstable or periodic throughout one’s life. And although invisible disabilities come in many forms, sufferers share a common hurdle in finding treatment and support options in their communities - disbelief.
What does disbelief mean for the disabled person? For some, it means rejection by their friends or families. Others suffer from harassment in the workplace, as their suffering is seen as “fake” or “exaggerated.” The healthcare system itself often rejects patients who suffer from invisible disabilities, with doctors unable or unwilling to treat the pain, chronic fatigue, and sleep issues that occur with many disabling conditions due to worries of malpractice and lack of insurance coverage for “unknown” conditions. In short, disbelief results in additional physical and emotional pain for a person who is already bearing a great load.
I’m still early in my own journey with invisible disability, and I’ll be frank in sharing that I haven’t stumbled upon any grand answers from the cosmos on the meaning of any of this. However, I have been reminded, time and again, of the healing power of kindness, and the great hope that is offered by a community that is willing to look to help those who desperately seek to be seen.
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September Story of Sarah
September...how ironic that a September in 2010 would change our lives forever. September is Childhood Cancer Awareness Month, and with this being such an important month to me personally, I would like to briefly share my daughter, Sarah J. Neal's, story.
Sarah was diagnosed just a few weeks before her 12th birthday with a rare form of bone cancer called Ewings Sarcoma. A lump on her right arm literally seemed to appear overnight. After an X-ray and an emergency MRI were performed, Sarah, my husband and I left Germany within 48 hrs. We flew to Walter Reed Army Hospital, where my daughter was fully assessed and her treatment regiment began. It was at this time that the full weight of her diagnosis, and the lifelong effect it would have on our family, began to take shape.
By Lisa Neal
There was fear, anxiety, loss, and a feeling of failing as a parent all mixed with this one desire to literally do anything to save our child from all the current and future pain we knew was coming. Meanwhile, because of our quick exit, my other two children were being cared for by a close friend back in Germany. An ocean was literally dividing my family. These truly were dark days, and it seemed our world was crumbling.
We were finally all reunited in December of that year and moved to San Antonio, my hometown, to be around supportive family. During Sarah's 3 1/2 year battle with cancer, she endured chemotherapy, radiation, and several surgeries in an effort to win her battle.
Sarah was the bravest person I knew, always smiling through her pain, making others feel comfortable when she wasn't, and just trying to live life to the fullest. Sarah had the craziest laugh, the most contagious smile, and an off-key singing voice that was hilarious if not ear piercing. She looked for the best in everyone, past their flaws and annoyances, and found their grace and uniqueness. I hope you recognize this in Sarah's character as you read her poem.
My daughter lost her life in April 2014 at the age of 15. Below is a metaphor poem she wrote in middle school. I hope you enjoy it.
My Canine Companions
By Hilary Pircher
In 1991, I was born at 26 weeks gestation and lived my first 3 months in the NICU. At 18 months, I was diagnosed with spastic diplegia Cerebral Palsy. CP affects my gait, balance, coordination, and stamina. Currently, I describe myself as an ambulatory wheelchair user. In the early and mid 2000s, I described myself as “needing help with stuff.” I needed more help in daily life than I wanted and thought a service dog would be the most enjoyable, stealthiest way for me to get it.
I was officially matched with Canine Companions service dog Hudson IV in 2007, at the age of 16. Pre-match Wednesday, when people and dogs are paired to work together in hopes of permanent partnership, was Hudson’s 2nd birthday. We joked that I was his gift. I like to say that Hudson was the dog equivalent of an English butler— unmoving, dedicated, immaculate. Along with the 40 commands for physical tasks that all Canine Companions service dogs are trained to perform, Hudson’s job was to be a “social bridge” for me.
When I met Hudson, I was in high school. I do not want to say that I had trouble connecting with my peers— my peers had trouble connecting with me. Before social media and even the popularity of platforms like YouTube, our lives were often limited to things we had experienced in person. Most people around me had never experienced life alongside someone with a disability.
There were so many unfamiliar, uncomfortable things about my Cerebral Palsy. My relationships to others at the time were less equal and therefore less healthy. But we found a familiar, comfortable common ground thanks to Hudson: dogs! I went to California as “that girl with the pink cane” or “that girl who uses a wheelchair,” and came back to Texas as “Hilary with the giant (and beautiful…and smart) dog”!
Hilary with the Giant Dog, this empowered version of me, became an adventurer. With Hudson at my right side, I lived in 4 different cities independently from my family. “I want to go to art school in Chicago, or Portland; I want to finish university in Austin and Houston” I said, and they trusted that Hudson would take care of me and keep fostering connections. Just like anyone, I experienced hardships in this young adult era of my life, but Hudson was always there to retrieve an item, or open a door, or keep me company after another geographic change. I made lifelong friends. I grew as an artist and a student. I got my undergraduate degree, first jobs, first apartments, went on first dates, and flourished.
By the time Hudson retired, I started to view myself as a capable and confident young professional. My life was busier and made of a different energy. The world had changed enough by 2017 that the public was much more aware of service dogs as a concept. The people with whom I surrounded myself were also more educated about disability, or curious enough to ask questions in a respectful way. And so, when it was time to attend Team Training again, the focus of my “perfect match” was as much on personality and Energizer Bunny energy as on technical skill. Enter Geiler II.
Gei’s motto was “work hard, play hard.” Help with laundry or retrieve the keys I dropped under the car in a single, quick dive? No problem. Play fetch for an hour afterwards? Yes, please! We played to Gei’s strengths as The Most Personable Dog in Houston. He attended events with me and smiled for cameras. He took the mic at meetings of The Mayor’s Office for People with Disabilities and emailed our volunteer liaison at the Houston Airport System himself. When I found a job in the arts that involved kids with disabilities-- and educating those kids about service dog etiquette and function-- he signed on the dotted line for both of us.
Gei fully brought me out of my remaining shell. The best thing about this in the big picture of my life is that it sparked a passion for advocacy. During his time with me, I began volunteering for community town halls, outreach, and media opportunities without anyone having to beg. I love who I am as an advocate, and I love Gei for helping me get here. He decided in late 2020 that his ideal career was to be a pet, and was adopted by his Northwest region trainer, Amanda.
As a now 30-year-old woman, I was matched with Data II in May. Though we have only known each other for a few months, we connected instantly in a way that I did not experience with Hudson or Gei. Hudson made me strong and brave. Gei made me fierce and fun. Data, who lives for a quick pat in praise after turning on a light, or for a movie night snuggle, is making me more affectionate.
He is as gentle and steady as he is skilled and intelligent, learning new environments and commands almost immediately. Data seems to thrive in my current pandemic routine —a couple favorite people, coffee on a sunny day, and hip-swinging walks that say, “I’m a workin dog!”
Recently, I was interviewed by Canine Companions. One of the questions was a version of, “where do I see myself in five years?” I did not have a concrete answer, as the last year has been so unexpected for the world at large. But my general feeling is, I see myself as a leader. I see myself as a friend. I see myself living ambitiously in the dreamiest, most positive era of my life so far.
Our Terrible Secret
By Staci Almager
My husband and I have one of those adorable love stories that is extremely fun to tell. The short version is that we met in San Antonio, married, and raised a beautiful family with four children. We’ve been married for almost 25 years. We’re a private family and don’t tell our story very often. As new parents, instead of taking our new baby home, we spent eight months with her in the NICU. She endured hundreds of hospitalizations, complicated surgeries, and a kidney transplant. Her doctors and her family all knew a terrible secret, but we didn’t tell anyone. We all knew that she was going to die as a child.
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At the end, she was on dialysis due to a failed kidney transplant. Three days a week, a needle the size of a large smoothie straw was inserted in her upper thigh to keep her alive. She had the chance to stop dialysis and stop the suffering. But she endured it all so her three younger brothers would be old enough to remember her. She died on May 1, 2016. She was twenty four years old.
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She never closed her eyes and drifted off to sleep to die peacefully. Her dad held her as she suffered during her last moments on Earth. Her death broke us all. We will always struggle with the “why”. Because there is no “why” any child suffers and dies. I want to share some advice with other families. During and after, you will never be the same. Even though the pain does not go away, somehow your soul will eventually make enough room in your heart so you can hold it all– the grief, the pain, the joy, and the love.
How I'm helping the disabled access the covid-19 vaccine
By Laura Hernandez Aplin
When my husband was diagnosed with Epilepsy several years ago, I became part of an empathetic community seeing the world through a different lens. People with serious health conditions and those with disabilities face challenges most of us can’t understand until they touch us personally.
Over the past few years, I’ve had the privilege to help promote deserving organizations including the Autism Treatment Center, a nonprofit with a mission to assist people with autism and related
disorders throughout their lives as they learn, play, work and live in the community.
When COVID-19 hit, it really opened my eyes to the need for disability-friendly COVID vaccination drives that address the needs of individuals with physical, sensory, mental, or cognitive disabilities.While there are more opportunities for people age 12 and older to get their COVID-19 vaccine, accessibility can be a real challenge for anyone living with a disability.
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Barriers for all of these populations can be addressed by providing assistance with registration, eliminating long wait times, selecting venues that are familiar or easy to navigate, addressing communication differences, and reducing sensory stimulation.
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Breaking it down further, a disability-friendly COVID-19 site could address:
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Communication differences - for adults who are deaf or hard-of-hearing, this means providing ASL interpreters available to assist with communication.
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Navigation - for individuals who are blind or low vision, it means help before the appointment with an online system that doesn’t work well with assistive technology or orientation volunteers to navigate them through the vaccination site once they arrive.
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Accessibility - for people with mobility issues, it means coordinating appropriate transportation to and from their vaccine appointment.
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Sensory stimulation - for individuals with autism or other developmental disability, a disability-friendly vaccination site is one where noise, crowds, and lights are kept to a minimum and staff and volunteers are trained to work with challenging behaviors caused by anxiety and stress.
In an effort to address barriers for people with disabilities, the Autism Treatment Center has partnered with several local organizations in San Antonio to coordinate disability-friendly COVID-19 vaccination sites including disABILITYsa, DMS Pharmacy, and Metro Health.
If you have a family member or are a caregiver for someone in need of a vaccine, please contact the Autism Treatment Center at (210) 590-2107. If you would like information on autism services, please visit https://www.atcoftexas.org.
Before and After...
by Nicole Cornelius aka Moriah’s mommy
Moriah Jazmen McNeil
Born March 9, 1995, 7:50 PM in Richmond, Virginia
Diagnosed with Fibrosarcoma (Brain) September 27, 2002
Before my beautiful daughter Moriah was diagnosed at seven years old
with a terminal brain tumor in 2002, I took many things in my life for
granted. As a recently divorced mother of three children, I was
overwhelmed with life and looking back I spent a lot of time fussing at
the world for all its imperfection. It felt like everything in our life was a
race. Rushing the children to and from daycare and school, I would
scurry them to the car and back home to do homework and
extracurricular activities. It seemed like we were always hurrying to go
to sleep only to start the same process the next day. We were in a
constant state of rushing and not truly appreciating all the sweet subtleties that life allows you.
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As a nurse, I spent my days caring for my patients, and my evenings caring for my family. I felt like I had everything in control, and if I stayed ahead of the issues, I could prevent any serious consequences for those I cared for and loved.
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After Moriah’s diagnosis, I learned very quickly how little control we all have in this world. I learned not to take anything for granted. Her illness began a life changing process for everyone who loved Moriah. Her father was angry and avoided any notion that she was ill. Her 17-year-old brother, Robbie, secluded himself and did not want to talk about what was happening or how this made him feel. Marcus, the youngest child, who was only 5 years old, was constantly searching for reassurance and attention. I was in a hyper vigilant mode, and I made lists for everything that needed to be done, and prepared for the inevitability of Moriah's treatments. I became a machine. I was still rushing, but this time with purpose and intention. I walked through my days in a state of constant prayer, begging God, and bargaining with every aspect of my being. I promised to do better and more…if only He would save her.
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I found a physician in San Antonio that was highly respected for his work with rare childhood tumors, so we moved from Richmond, Virginia to San Antonio, Texas to start Moriah’s cancer journey. The first week of radiation was horrific, she had to have her head bolted down to a table for precision. As we walked down the hallway to the treatment room, her knees would buckle because those five minutes in radiation were almost unbearable for her. I wanted her experience to be as painless as possible, so I sought out the advice of many health care professionals on how to minimize the trauma from the radiation procedure. I finally found a pediatric anesthesiologist that met us every day to lightly sedate her for the procedure. It was a game changer. Now, she did not fear getting her treatment.
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Once all the radiation treatments were completed, we started the long journey of chemotherapy. Here is where the real lessons began. I no longer could rush anywhere or control any situation for my beautiful daughter. We sat in the physician’s office or in the hospital room getting treatments and recovering from treatments for hours, days, weeks, and months. It was at this time that Moriah decided she wanted to do something to raise money for her friends that were also sick. She watched their struggle through cancer treatments, and her heart was compelled to do something that would help them during this time.
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She wanted to ensure they had access to things like transportation to and from the physician’s office. It made her sad to watch some of her friends at the bus stop as we drove home in our air-conditioned car. She could not wrap her head around why they had to stand out in the heat while she was in a cool vehicle. That is why she came up with the idea of creating an art auction, where all of her friends in the clinic would create art and then auction these creations to raise money for cars, food, or anything else to make her friends in need have a better experience during the most difficult times in their lives. She was so excited about being able to raise money to help her friends it became her daily passion. She would fall asleep at the table gluing spray painted macaroni to contact paper. Moriah researched all the different types of art that she could do with her friends and arranged get togethers so all the children would have an opportunity to create art that was an expression of who they were. Watching her take control in a world where I felt I had none was a beautiful experience.
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Moriah taught me so many lessons before she left this earth. She taught me that laughter is always the answer, and not to take myself so seriously. Moriah had a way of touching people where they needed it. For example, if you did not believe in a higher power or lacked peace in your life, she would find a way to share a Bible verse or a life experience that she had in order to change the mindset of the person she was speaking with. I watched my daughter council adults on life experiences, and she was just a child.
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Her positive energy was contagious; she would not stand for anyone feeling bad for her. Every aspect of life was a gift, and she made sure everyone around her knew it. Often as we lay silently in the bed holding one another as we fell asleep, she would softly whisper in my ear, “Don’t be afraid mommy. Trust Him.” She would tell me that although she wanted to be here with us, only God knew where she needed to be, and she was happy to go where He needed her.
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As I watched my daughter slip from this world, I knew that I would spend the rest of my days emulating her courage, determination, and her love for this world! I would not let myself be less than who she would expect from me. I feel a great satisfaction and blessing being the mother of such a special child. I also feel a great responsibility to my family and the world to be the best person I can be. I am at peace and hold the love we shared close to my heart.
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I have been touched by an Angel.
~ Nicole Cornelius aka Moriah’s mommy
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Links to view more of her story:
The Moriah and Carlos McNeil Memorial Scholarship | Facebook
Value of Inclusion
by Peggy Houk, Special Education Teacher
I had breakfast the other morning with a friend and her friend. As can happen when new people meet, the stories of our lives flowed freely… questions asked, stories told, histories revealed. We each have our own story, but it’s so interesting how lives, from all over the country can overlap, connect and even intertwine.
We talked about our children and hopes for our children. As a high school special education teacher, I had more questions than answers but one story I shared resonated with both women… I started off teaching in elementary school and progressed to middle and high school as my own children grew and I matured as a teacher too! I share my personal beliefs about school and grades with the parents of my students so they understand part of my philosophy of education -which is that EVERYONE has a purpose and is/can be a valued part of our society, no matter a person’s physical or mental limitations. Everyone has something to give.
A big part of my job is to help students be as independent as possible and to help parents see that there may be more out in the world for their child than they can even dream. Part of realizing that is to make sure that students are included in school and community to the greatest extent possible. If “Johnny” goes to school (birthday parties, the movies, the Rec center, etc) with “Sammy” all through elementary, middle and high school together then when “Johnny” goes to get a job, Sammy may be in a position to hire him, or put in a good word for Johnny to get that job. Sammy is comfortable with people who look, talk, walk differently than he does, but he is comfortable with it because he has seen it and been exposed to it and is a part of his everyday life.
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Two ways I have seen this work best is 1) a parent goes into the elementary school class at the beginning of the year and talks about his/her child and shows pictures of their typical family pictures (vacations, birthdays etc) and says, “Yes it might look a little bit different than your family but s/he wants to fit in just like you do. S/he might act this way ______, but s/he is just trying to communicate ____”. “Don’t be afraid to talk to Sammy. He wants and needs friends, just like you.”
As a mom I watched my daughter in second grade befriend a boy that had CP. She would push him on a special swing during recess and include him going around the track in a wagon. They were truly friends. I don’t know if this would have happened without the help of adults helping lay the groundwork - but I was thrilled for BOTH kids.
The second type of “intervention” that helped me as a teacher was when the mom of a rising 9th grader presented me with a PowerPoint and 3 ring binder about her son. His likes, dislikes, things that triggered him and things that calmed him. Learning preferences (visual versus auditory) and motivators. This twenty - 30 minute meeting with the parents and the child before school started made the most amazing impact on the child’s transition to high school and success in school that year. I knew a little about him before school started and could start personalizing things for him right away which made us both more comfortable. Furthermore, now I send a similar document (google slides) to the current gen Ed teachers and next year’s teachers to help advocate for every student on my caseload. Taking the time to make it personal helps Gen Ed teachers get to know “my kids” before they even walk through the door and anticipate needs and differentiate lessons, etc. I would encourage everyone to share the story of their child with teachers, caregivers, friends, etc.
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I am not a parent of a special needs child, but I am a member of society and don’t like seeing people with value overlooked because “we don’t know what to say or do.” This is my plug to all parents to help educate the people around your family, so we as a society can do a better job of including your most valuable possession within their/our community.
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You/we are not alone! We can do this!
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Wow, So Amazing
by Suzanna Hendricks
Mary and I are seven years apart, we were told by an astrologist at the Ocala, FL Strawberry Festival that “according to NASA” the moons on our respective birthdays are two halves that create a whole. She was born with Down Syndrome and a hole in her heart the size of your thumb. After enduring two open heart surgeries in her first ten days, her little body courageously fought to live and beat the immeasurable odds against her. She must have known we needed her.
We are the second oldest and youngest of a family of five daughters. While I always imagined, late in life, Mary would ultimately live with me for long term care, I was not prepared to be asked to step into full responsibility for my sister when I was thirty-three. On the heels of a cross-country move, with no home and in the midst of job interviews and very much still single. Not to mention not due to a death but a catastrophic medical emergency for our Mom, suddenly leaving two very vulnerable people for all of us to care for long term. I want to say that I rose to the occasion with ease and with no sense of terror but that would not be the truth. This, this series of events didn’t seem possible. Mom permanently
disabled, Mary without a home, caregiver or security indefinitely and all of us fumbling forward trying to make the best next choice for both. But, then when the decision had to be made I quieted my very loud, and a few very practical fears and reminded myself it was Mary. My Mary.
My beloved sister who deserved to have a champion for the long term who loves her as much as I do and as much as she loves me. On September 6th, 2019 I became Mary’s court appointed Legal Guardian.
Largely due to the pandemic and extenuating circumstances, Mary moved in with me full time a year ago and by her account is living “a miracle life!”. When the COVID-19 pandemic unfolded, the world slowed down around us, but life with Mary is one that inherently needs to slow down. She both needs and thrives in a slower and quieter pace of life. We started taking walks every afternoon after I finished my remote work, cooking amazing meals, watching movies, doing art and finding a new rhythm together. There has not been one day since she moved in with me where she hasn’t told me “You are so pretty”, “I love you”, “You are so amazing”, “I love living with my sister”, “You are so smart”, “I love your food”. On all the days, and there have been many days of overwhelm stepping into a pseudo-new parenting role, “on the job” learning how to manage every level of her daily care, turns out she has been teaching me something at every turn. She is a master at simple thoughtfulness, kindness, car dancing, organization, the best laundry folder you’ve ever met, loves watching her favorite movies repeatedly and a hot chocolate or hamburger is the way to her heart. When she really loves something, she exclaims “Wow, so amazing!” with a big belly laugh to follow. Her resilience and strength have astounded me as I’ve watched it up close over the last year. The number of medical conditions alone she has to live with, of which she very rarely complains about is enough to humble anyone. Even more than that – the way and how deep she loves is as if you’re getting a glimpse of Divine love. It’s effortless and true – no ego, shame, anger, disappointment clouding her heart. She loves big and she loves fully. Even on her “hard days”, she is quick to apologize, forgive, regroup and be kind. Holding deep intuition and empathy, she is a sponge of the energy and environment around her – it’s truly remarkable. When she feels safe and loved it’s like watching a plant receive everything it needs, grow tall and beautiful. Every time she looks at me and exclaims “Wow, so amazing!”, I want to and often say in response, “Mar, you are so amazing!”. Because there is nothing truer about her.
How did I get so lucky to have her part of my life? To truly know Mary is to know what love is.
I may not know what comes next or how life will shape around us, and often feel in way over my head, I have learned so much from her. This year of entirely unbelievable circumstances has impressed upon me the deep awareness that we all hold the potential to both harm and heal one another. I am deeply grateful to have been learning from my little sister how significant the latter is.
Our middle son, Levi
by Annie
Your sibling story touched my heart! Our middle son, Levi, is our only child without cystic fibrosis. We were intentional from day 1 to let him choose his involvement in his siblings’ health. From the time he could talk, he’d been their biggest cheerleader, and he has been right there with my husband and I as we advocate and navigate.
At six years old, he can list the medications and dosing for his big brother and for his little sister. He knows how to set up their breathing treatments, and he could give Grace a
g-tube feed himself (with just a little help with the math). He prays for them daily, he sends them daily notes and gifts in the hospital (since he can’t visit to play with them due to covid), and he even fussed at our oldest when he show some adolescent-like resistance to his treatments and meds.
In a few rare, raw moments, Levi has told me that it’s sometimes hard to be the “healthy kid,” and that he feels like he doesn’t always get the attention he wants. This breaks my heart, and we constantly work to show him how precious he is to us and how vital his role is in our family ASIDE from the care he shows for his siblings. All of that is to say, these siblings are truly fulfilling a high calling, and I am in awe of their strength and compassion. Thank you for this blog. I feel “seen” every time I read it. Hugs to your precious family.
Blessed
by Community Contributor, Stacy Thibodeaux
“You better be pretty spectacular, little one.” I said, patting my bulging belly. “You've got an amazing big sister to compete with.” Like many moms expecting a second child, I couldn’t fathom falling in love with another baby. My three-year-old daughter, Grace, was, as far as I was concerned, perfect. How could I love another child as much as I loved her?
A few days later, baby Pierce came into the world accepting my challenge to make his presence known. Twenty-four hours of labor, an emergency trip to the NICU when he stopped breathing, and severe esotropia all ensured that baby number two was getting my time, attention, and love, albeit in the form of overwhelming concern - not the kind of “spectacular” I had asked for.
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As the weeks turned into months, my concern kicked into overdrive. Pierce didn’t make eye contact, didn’t respond to his name and didn’t interact with his environment. He pulled back from touch, threw tantrums in his carseat when we stopped at red lights and spent hours rocking and rotating his wrists and ankles. Pierce didn’t babble or coo, refused to eat foods with texture and reacted with extreme sensitivity to sound, temperature and odor. He certainly wasn’t meeting any of the What to Expect the First Year milestones that his sister had conquered ahead of schedule. So, well before any pediatrician was willing to diagnose autism, I was convinced that my son was on the spectrum.
Well meaning friends and family dismissed me:
“Stop comparing him to Grace. Boys mature more slowly than girls.”
“Quit expecting so much of him.”
“Pierce is fine. He’ll do things when he’s ready.”
Even my pediatrician brushed me off: “Give him time. You’re over-reacting. All babies develop at their own pace.” As much as I wanted to believe Pierce was okay and that I was putting too much pressure on him to do things by the book, I knew in my gut that Pierce’s delays were not minor and he was not going to “catch up” on his own.
Determined to learn more about autism and the services offered to children on the spectrum, I joined an autism support group. And while I did meet other parents who empathized with the challenges I faced with Pierce, I also encountered negativity, anger, and resentment. Many parents were focused on blaming - vaccines, the environment, even God - for their child’s autism, rather than trying to find ways to help their children achieve all they could. I left the meetings discouraged and exhausted instead of hopeful and empowered. I was tired of being told that I could try this, that, or the other thing but “face it Stacy, it isn’t going to get you anywhere.”
I realized I had to make a choice. I could fret and moan about “why me?” and “why my child?” or I could accept who Pierce was and all that parenting a child on the spectrum entailed. I made the decision to look at his autism as a blessing, not a burden - a blessing I might not fully understand, but one I could learn from and embrace.
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I found therapists - physical, occupational, speech - who believed as I did: that every child has potential and purpose. I relied on their support and expertise to teach and guide, not only Pierce, but me. I read as much as I could about sensory processing, proprioceptive input, and oral-motor defensiveness. I pulled out the Teach Your Baby to Sign book that I had used “for fun” with Grace, and resolved to teach Pierce sign language as well. Instead of complaining about services that weren’t available to my son, I took advantage of any early intervention program that was available. And most importantly, I surrounded myself and Pierce with people who truly believed that he could be reached, he could learn, and he could thrive.
I had amazing team of therapists and a supportive family, but nonetheless, when it came to Pierce nothing was easy. Good days - when Pierce actually let his occupational therapist hold his hand to help him use a crayon - were exhausting. And bad days - when he had four, five, six meltdowns - were completely disheartening. My precious little boy, who without a doubt I loved with all my heart (how could I have doubted that I would?) refused to meet my gaze, couldn’t find comfort in my arms, and really didn’t seem to have any awareness of the world around him (except when that world bothered him). What did the future hold for my son? All I could do was was pray and plunge forward.
Slowly though, Pierce began to meet milestones. Accomplishments (that I had taken for granted with Grace) were monumental for Pierce. When he finally repeated “ba-ba,” I cheered and hugged his speech therapist. When Pierce took a sip of milk through a straw, I danced around the kitchen. And when he gingerly put a Cheerio in his mouth and swallowed it without gagging, I sobbed. I was overwhelmed with gratitude and appreciation for every little task that Pierce achieved.
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I also found a new appreciation, even admiration, for other parents. Parenting is a demanding job under the best of circumstances. Grace was an easy - even fun - baby to raise, so I had taken a lot for granted, just as I had taken credit when she walked-talked-read early. And when people would comment: “What a sweet little girl. She’s so well behaved.” I beamed with pride. Now though, I was the parent whose child screamed uncontrollably in the checkout lane at the grocery store for no apparent reason. I was the parent whose child who acted like a spoiled brat as he thrashed at me and hit himself. Now I was one of those “overly indulgent moms who couldn’t control her kid” - moms I had dismissed in the past, silently judging: “my child would never be allowed to behave that way.” Talk about humbling.
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Pierce is now 18 years old, a senior at Central Catholic High school with a 4.5 GPA and a leader in the school’s JROTC program. He (we) still struggle with eye contact and social skills and driving (OMG, driving! That deserves an entirely separate essay!). But as I look at where my son is today compared to where I thought he’d be, I can see God’s hand in all that he has overcome. I can see the miracle of believing in the power of potential.
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Theories abound about what causes autism. I’m more interested in autism’s effect. For me, having a son on the spectrum has profoundly changed who I am - as a mother, a wife, and as the lady behind you in the checkout lane. I’m a more patient and accepting parent: my children are not a reflection of me put on this earth to make me look good. Rather, it is my responsibility to help my children shine as brightly as they can using whatever light God has given them. I’m a more loving spouse: my children’s happiness in intimately tied to the respectful and affectionate relationship my husband and I model for them. And, when I see the harried mom struggling with her “spoiled” child, instead of looking away embarrassed for her, I give her a supportive smile which I hope conveys “I know you’re doing the best you can do.”
Yes, Pierce has met and even exceeded my challenge to be spectacular. And I am blessed and grateful to be sharing his journey.
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