NOLAN BRUINSMA

Nolan Bruinsma was born February 11, 2005. He was the firstborn of Greg and Liz Bruinsma. We were young, newly married, and ready to start a family. At six weeks old, Nolan experienced second-degree sun burns on his hands and face after going for short walks outside under his stroller canopy for two consecutive days in April. This raised alarm bells. Nolan’s maternal uncle had a rare genetic disorder called Xeroderma Pigmentosum. What are the chances that Nolan could have this same genetic disorder? “Infinitesimal” is what the dermatologist said. It turns out that “infinitesimal” and “one in a million” do not really matter in statistics when you serve a God who is sovereign over all things. God determined that Nolan would have this genetic disorder no matter how small the chances. God also determined in His wisdom, which is infinite, that Nolan would be given to our family and for us to care for. Nolan was diagnosed with Xeroderma Pigmentosum (XP) by the National Institutes of Health at 18 months old. XP is a rare, inherited autosomal recessive genetic disorder causing extreme UV radiation sensitivity due to deficient DNA repair mechanisms. In layman’s terms: Nolan’s skin must not be exposed to the sun and he is 10,000 times more likely to develop skin cancers from sun exposure.

We were aware that Nolan might have some physical and mental delays due to this rare condition but were hopeful that he might be part of the 80% of patients who do not experience mental and physical involvement. He was always a little slow with his milestones but just fast enough not to qualify for any kind of early intervention. Finally, at the age of 18 months, he was delayed enough in the therapy world to qualify for physical therapy, occupational therapy, developmental therapy, and speech therapy.

Once Nolan turned 3 years old, he attended the local public school to continue his therapies and be in a peer-structured pre-school. When he turned kindergarten age, we wrote a letter to our Protestant Reformed school board outlining our deep desire for Nolan to attend our Christian school along with his peers, cousins, and, one day, siblings. We were gently told this was not possible, as PRCS was not set up for his kind of needs. Each year we continued to write letters to the school board with our great desire for him to attend. During those years PRCS allowed Nolan to participate in his class on Friday afternoons with an aid. These were special years and a way for Nolan’s class to get to know him and include him. Nolan continued in the public school system through 4th grade. He was cared for and taught by many teachers and aids who loved him and were patient with him. He learned many great things at the public school and they were very good to us and him.

We were so excited when PRCS opened the Achieve room for children who needed more than our Discovery/ Resource Center could accommodate. From then on, Nolan attended PRCS with his fellow church friends, peers, and siblings. It was amazing! The Achieve room with the various teachers and aids through the years have been such a blessing to our family. To have Nolan attend our Christian school and be part of the body of Christ alongside his peers was such an overwhelmingly positive experience for all involved. His classmates were so kind and inclusive. Other children from other grades got to know him. He would walk the halls and get high fives and knuckles from all his friends, and he would “knock over” his friends with a push and they would dramatically fall to the floor while Nolan would laugh and laugh.

During those elementary school years Nolan was making mental and physical progress, albeit slowly. He continued his therapies even in our PR Christian school, with the public school coming in for therapy services. Nolan could walk, run, say about 300 word approximations, was potty trained, fed himself, and, we would say, was operating at about a 2-3-year old level. These were good years. Our family grew during this time as well. We were blessed with two more sons who were normal developing and one daughter who also has XP. Nolan was charming, curious, fast, carefree, and loving. He loved to sing in church and at home and listen to music. He loved playing games on his iPad, listening to Covenant Christian high school choir’s YouTube channel—and he loved chips! Oh, how he loved his snacks. Church and hanging out with family were his favorite things. He would say “church” over and over and over. We distinctly recall his last spoken word to be “church.”

Around the age of seven we decided to have Nolan’s hearing checked. We had some concerns about his hearing, and from research groups that we were a part of, we knew that hearing loss could be a sign of neurological decline. We were shocked when the results came back with profound hearing loss. Along with that diagnosis came the reality that Nolan would continue to decline mentally and physically. What that would look like, we did not know. But we did know that hearing loss was the first sign of regression. At first regression was slow. But over time it seemed an overwhelming loss of functions all at once. He moved from walking unassisted to walking with a walker. Then he was upgraded to a wheelchair. From there were eating/swallowing struggles that resulted in him being fed through a G-tube. Bathroom complications meant sensitive procedures that only a few could manage to perform. He eventually underwent surgery to give relief in the bathroom functions. Nolan also sustained a spinal fusion of his whole spine to relieve scoliosis complications. These surgeries were a big deal and we learned much about him and how medically fragile he was. All of this was happening in his late junior high and early high-school years. Around his freshman year Nolan was fully wheelchair bound, not eating or drinking by mouth, not eliminating waste on his own, coughing and choking frequently, and was completely dependent on others for every aspect of his daily living and care. Nolan survived two bouts of pneumonia that resulted in surgeries and extended hospital stays. Then COVID-19 came on the scene. We were worried about his health especially at this time, but God sustained him and as far as we know, he never got COVID.

On the morning of January 24, 2022, Jesus visited our home and took Nolan to be with Him in glory. He was 16 years old. He was “healthy” and “in a good place.” We were not expecting it, although we were not expecting him to live a long life either. The Lord answered Jesus’ prayer of John 17:24, which states, “Father, I will that they also, whom thou hast given me, be with me where I am….” That day we were overcome with staggering grief over the death of our firstborn special child. Very soon after his death, we were able to make this confession: God dealt with us gently in taking Nolan from us.

Let us explain. Our fear and concern was that Nolan would be sick in the hospital when his time would come. Maybe we would even have to make hard choices as to the end of his life. Most likely if he was in the hospital, he would be in Indianapolis, where we doctored. Indianapolis is 2½ hours south of us and away from family. We were afraid he would be in pain and struggle. God orchestrated that whole day to be gentle with us. Early that morning school was canceled because of snow. Nolan was home, in his own bed, there was no struggle heard. We have every confidence he was peacefully taken in his slumber. We did not have to make hard decisions  or see him struggle. God made it possible for our whole family to be home and for us to be together that morning. Extended family members came over that day, including cousins, to grieve with us and care for us. God held us tenderly and graciously cared for us thorough our family and fellow saints. Rev. R. Barnhill organized a night of singing and prayer at Peace church for us and our extended family, including all nieces and nephews. We visited with close family and friends after the church singing. Rev. Barnhill also spoke at a special all-school chapel that week for the benefit of the school children that knew Nolan so well. We were spiritually cared for in this way during our time of immense grief. God was so good to us and to our children.

Greg would worry how he would react when his “little man” was gone. He was afraid he would not be able to handle it or go on. We did not know at that time, but in hindsight, we see that God was graciously leading us there too. We had already started grieving Nolan’s death with every new diagnosis, with every milestone lost, each set back, medical difficulty, and surgery. These griefs were hard to bear over his lifetime but made the final grief just a little softer. The night before Nolan died Greg got the most precious last moments with Nolan. Nolan was upset in bed, which often happened, and Greg prayed with him and sang to him, “What a day that will be when my Jesus I will see.” Little did we know how soon that would be. What a gift of grace!

Liz’s grief was greatly connected to her daily care of Nolan for all his needs. She cared so diligently for his body and for his skin—all his devices and tubes that helped us keep him alive and provide good quality of life for him. Suddenly, her job as a mother changed dramatically. Medical supplies were no longer needed that, just the day before, were life-giving for Nolan. Strict schedules and medicine alarms on her phone no longer relevant. Upcoming appointments to cancel and phone calls to make. All that tender love and detailed care was not necessary now for Nolan. He had all the care he would ever need now, in heaven. Liz has found grief best described by author Tim Challies in his book, Seasons of Sorrow. He states,

One of the realities of grieving as a Christian is the coexistence of heights of joy alongside depths of sorrow. They run parallel, like two streams flowing from a common mountain peak and traveling through the same valley, yet never quite touching, never quite emptying into the sea to become one…. While the streams of joy and sorrow run in parallel, they are not identical. The stream of joy is more like a gentle brook, while the stream of sorrow is like a raging river. It is sorrow, not joy, that threatens to overwhelm me, pull me in, and drag me under. I’ve never had to remind myself to temper my joy with sorrow, but I often have to search for light amid the darkness.

During Nolan’s lifetime we saw the Holy Spirit working in his life in simple ways. As the Bible teaches, a simple childlike faith. Nolan loved to sing and praise God in his own little way of making a joyful noise, particularly Psalter number 391, which he often sang. He would add the last word of each line along with whoever he was singing with, often his grandmother. This Psalter number holds special significance to us still. We cannot sing it without tears. Nolan would pray at the meal table just as any other child is taught to do. He would say the last word of each phrase of the Lord’s prayer along with us. Even at the end of his life, we would tuck him into bed and pray with him each night. Even if he was a little agitated, we would nestle in close to his ear and pray with him. He would instantly quiet down. He knew we were approaching the throne of the Most High God, his God. We have confidence that Nolan was a covenant child of God and as it is beautifully stated in Canons 1.17 of infants, we believe of Nolan:

Since we are to judge of the will of God from His Word, which testifies that the children of believers are holy, not by nature, but in virtue of the covenant of grace in which they, together with their parents, are comprehended, godly parents have no reason to doubt of the election and salvation of their children whom it pleaseth God to call out of this life in their infancy.

Our grief now is still real. Time has softened the sharp edges of pain that we felt that first day, week, and year. But time will never completely heal our wound of losing Nolan. That wound is easily torn open and bleeds afresh—for instance, when we hear a certain song, listen to a certain Bible passage, wrap ourselves in a blanket made from his shirts, wear his old socks, or see his picture. But there is a scab that covers the wound to buffer our deepest grief and our strong earthly ties to our firstborn son. The gospel promises of hope and resurrection are written all over that scab. They give us comfort and assurance of salvation and of everlasting life in heaven with our Savior. They remind us that Nolan’s race is finished; his journey here is complete. His resting place in heaven was ready for him. His earthy struggles with sin and discomfort are over! His soul, on that last day, will be reunited with a perfect body, free of genetic anomalies. What comfort our heavenly Father gives to us each day! Mercies for today and promised mercies for tomorrow. “It is of the Lord’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness” (Lam. 3:22-23).