Mormon Channel Blog

Patience: Faith in Caregiving

November 3, 2015

This is the story of Jodi, who experienced a devastating prognosis during her pregnancy with twin girls. She shares what caring for her daughters has taught her about patience and faith in the Lord.

For the first years of our marriage, my husband and I lived in the Netherlands. We had an exciting life, full of work and adventure. We loved the members of our little church group and cherished the friends we made. We were able to travel and to explore many different cultures. We planned a family and were anxious to share our lives and our adventures with our children.

In the same week we learned that we were to be parents of identical twin girls, we also learned that they had a crippling diagnosis and dismal prognosis for long-term survival. Both joy and agony somehow had to fit into the same space in our hearts. We had no idea what this could mean to our future and to the lives of our daughters.

Our girls were diagnosed with twin-to-twin transfusion syndrome, a condition that affects a small percentage of identical twins. They were essentially conjoined and their shared circulatory system did not distribute vital nutrients equally between both babies. According to the four specialists we visited, we were to expect death or severe disability for one or both of our long-awaited daughters. We were strongly advised to terminate the life of at least one of our children.

All the while, we were praying for a reprieve, some hope, anything that would assure us that the Lord was aware or would intervene and perhaps miraculously heal these innocent babies. Somehow, in the midst of this trial, there was eventually calm in our hearts. It did not come easily. There were many tears, fasting, prayers, and pleading with the Lord to bring understanding and peace. Support came from all directions. Thousands of prayers were offered in our behalf. When the girls were not initially declining as expected, one of our doctors noticed our faith and that of our friends and family. He said, “I don’t know what is happening, but these babies are determined to come to this world. Someone must really be praying for your children.”

On a particularly dark day, I received a direct and clear assurance that everything would be well. I would have continual peace from my Heavenly Father, if I would seek it. I wasn’t told that we would not experience death or disability. I was not told that anything would come easily. I was only, but unmistakably, reassured that everything would be all right. “All will be well” is the phrase that kept coming to my heart and mind. And so it has been. I reach back to that quiet, powerful moment very often for support and a reminder that God was and remains very much aware of my family and the struggles we face on a daily basis.

Our lives, on all levels, did change more profoundly than what we had ever imagined. Mary and Madeline were born three months prematurely in an emergency setting. The trauma that both suffered in utero resulted in severe bleeding of the brain, leaving them with irreparable long-term damage. Mary started having seizures the day of her birth. Madeline weighed 1.5 pounds and Mary was 2 pounds. They stayed in the neonatal intensive care unit for the first three months of their lives.

Many years have passed. Our beautiful daughters are now 18 years old. Mary’s brain injury was so severe that she is unable to walk, move on her own, speak, or see. She cannot chew or swallow, needing to be tube fed. She continues to have a severe seizure disorder and is also on oxygen due to chronic obstructive pulmonary disorder. She sits in a wheelchair and needs 24-hour care. Madeline’s disabilities are less severe in comparison yet nonetheless real and difficult. I share all of these details for the sole purpose of perspective.

We do not leave Mary’s side. Her ultimate health and safety require vigilance. Her care is demanding both physically and emotionally. We have slept next to her for most of her life because her seizures are uncontrolled and extreme. Her lungs are compromised and require intervention. Mary is also unable to swallow properly, which requires constant suctioning to allow her to breathe. How difficult it is to watch the panic in her eyes as she waits for the relief of that machine.

Everyone has trials. I personally prefer trials that have a beginning and an end. Those are not mine. Mary is not the trial. Mary is a sacred gift for which we express gratitude to the Lord every day. She is sunshine and light. It is a divine honor to be her mother. However, life can be cruelly unfair to so many, and in my opinion, it has been particularly unfair to Mary. I admit that I don’t always meet my challenges with a glad heart. I don’t always keep my perspective and see the silver lining. I get discouraged and sad. I want things to be different. It is sometimes outright agony to see my children suffer. My trials also come in the form of physical exhaustion and from the tug and pull of constantly trying to live a typical life. We are unable to participate with others in the way I would love. The reprieve from health concerns and ease of movement is what I long for. On a larger, more significant scale, I see beautiful young women who at nearly Mary’s age experience college, missions, love, and marriage. In this life, those will never be hers.

Early on, I recognized that I had the power to show faith in the Lord’s promise that “all would be well.” He had assured me. I could choose. I could turn this anyway I wanted. I could be resentful and angry and bring that stance into my life and the lives of my family. I could look forward with faith and glean value in this experience. My husband and I vowed, although the days would be long, to remain faithful and optimistic and to keep perspective. We don’t blame God. We look to Him as a source of comfort and learning. He assured us that “the worth of souls is great in the sight of God” (D&C 18:10). I have always known that every individual, no matter the type of body in which they are housed or what their challenge may be, is cherished by God.

This knowledge of the divine nature of all human beings helps to bless me with increased patience and understanding. One day a little girl who passed us, referring to Mary, whispered to her mother, “Mommy! She is broken. She needs help.” As tender of a moment as that was, witnessing the innocent observations of a child, I recognize that Mary does need help in abundance, but from my perspective, she is not broken. She is just right the way she is. She is perfect.

However, in all of this I remain grateful and hopeful. I have not been robbed of any of life’s meaningful experiences. In contrast, our experience feels more precious and gives me a clearer vision of my life and future. Blessings are abundant. Some are obvious; others are less so. I find that the more I serve Mary, the more beloved she becomes to me. The more I serve her, the more I love my Heavenly Father. Mary’s gentle spirit has touched all who will allow it. Our relationships with our extended family and friends are so dear to us. We have been the recipients of many loving gestures toward our children and ourselves. Our children are compassionate and empathetic to others. The Savior reached out and had a special love for those who were weak and unable to help themselves. He reaches out to me. He strengthens me physically. He has given me an expanse of love and compassion for all who suffer. I trust that mortality is a small moment in the scheme of forever, yet I can be happy today. The Spirit of God resides in our home as we are eternally blessed to care for the most innocent and loving of souls.

I find comfort in His assurance and unbroken promise that “all will be well.” I look forward to the future with brightness and hope for all who suffer and for those who care for them. I find comfort in His words and words of modern Apostles, including Elder Jeffery R. Holland:

“I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord Jesus Christ! With the Apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally ‘free at last.’ Until that hour when Christ’s consummate gift is evident to us all, may we live by faith, hold fast to hope, and show ‘compassion one of another’” (“Like a Broken Vessel,” Ensign or Liahona, Nov. 2013, 42).