“It’s a boy!” I gazed at my new son with excitement after a difficult and premature labor. His unusually shaped head caught me off guard as I noticed his large eyes open wide, as if to say, “I made it this far, Mom, now it’s up to you.” There was only quietness, no cry or first breath, only a sudden flurry as the doctors and nurses from all over the ward rushed in to save our baby.
Reflecting on some of the more dramatic events from the past few years, I am reminded of how God instructed the children of Israel to build Ebenezers, stones of remembrance, on their journey to the Promised Land. Whether it was supernatural miracles or everyday faithfulness, it is through remembering and retelling those stories that faith is strengthened. In doing so, we can thank God, give Him the glory, and keep pressing on. All these memories of what God has brought us through so far, are some of our family’s stones of remembrance.
Both James and I came from godly Christian homes, where children were seen as great blessings. We each came to Christ as children and rededicated our lives to Him in our early teens. Despite living many provinces apart—Ontario and Alberta—we met through some mutual friends, and after a long-distance relationship, were married in 2008.
God blessed us with wonderful children, our sixth being Jason—our first son with special needs, Down syndrome. Suddenly, a new world opened to us, filled with a lot of joy and some extra challenges that came with this baby. We almost lost him at nine days old after he became septic from a perforated bowel. Weeks spent in the hospital and having family watch over our other children were challenging at the time, but we never dreamed what God would allow just a few years later. Appointments and therapies began as we settled into a new routine with Jason. We cheered him on as he reached his milestones, soaking in his cuteness while encouraging him to try new things.
Then God gave us a sweet daughter, and everything about her and her birth was refreshingly normal. During the time when our world changed with Covid, our next baby (number eight) arrived.
He arrived five weeks early at our local hospital, unlike our previous home births. What a lifesaving gift that would turn out to be. During labor, God brought to mind a favorite song, “The Lord is My Salvation,” which I clung to as my spirit felt unsettled about this birth. Then, as soon as he was born, he opened his big eyes and looked at me. He couldn’t breathe. They whisked him to the other side of the room, where nurses and doctors rushed in for a “Code Pink,” spending eleven minutes resuscitating him. We were in shock. An ultrasound had been done just a couple of hours before birth, and nothing had indicated the physical deformities we now saw.
We named him Michael Andrew – Michael meaning “Who is like God” and Andrew, after one of my brothers. We wondered if it would be a good fit for him, but weeks later, we saw such confirmation.
I would not be able to hold him until two days later, and our seven children would not meet him for six and a half months. We were transferred to McMaster Children’s Hospital in Hamilton, ON, just a few hours after his birth, beginning an entirely new medical journey. The doctors did not know which genetic skeletal disorder Michael had, so they sent his DNA off for testing. However, they suspected it was a fatal condition and that he would only have weeks to live. That first day, we took turns holding his hand through the incubator, overwhelmed with grief. Due to Covid protocols, James and I were never allowed to be together at his bedside. We would switch off, trying to soak in every minute we had.
God surrounded us with so many people who cared for us and prayed for us. Our dear church family held an online prayer service for Michael, and what a blessing that was. We are still amazed by how many people from all over the world say they continue to pray for Michael and our family.
A couple of weeks into our Neonatal Intensive Care Unit (NICU) life, a nurse allowed James to sit with me for 15 minutes while I held Michael. Through tears, we sang “Jesus Loves Me” and his song, “The Lord is My Salvation.” The chorus, coincidentally, echoes the meaning of Michael’s name— “Who is like the Lord our God, strong to save, faithful in love…” It was such a special gift to be together with Michael, but it hurt so much. We wanted to keep him so badly, yet we held him up to the Lord.
Whenever I held him, I was not allowed to move. If his breathing tubes came out, they probably would not have been able to intubate him again before he died. It took two staff members to move him into my eager arms, so I would hold him as long as I could. It was a heavy time, but it was also a time when we felt God hold us extra close through the pain.
At six weeks old, we received his diagnosis—Bent Bone Dysplasia—which means every bone in his body is curved or bent. It is extremely rare, with very little data available; only thirteen recorded cases, most of whom had died, had been aborted, or had been let go for various reasons. We later discovered that, at the time, there were only three other children in the world with this condition.
The main concern the doctors had was whether his misshapen rib cage would grow and accommodate his lungs or suffocate him. Michael had many other complications, including a very small airway, the need for a permanent feeding tube, and numerous cranial vaulting and reconstructive surgeries ahead. They offered us “options,” such as termination, and that was when the gospel was shared with the medical staff. God gave us the words, and even in our grief, His good news went out. We also explained that his life is made in God’s image and that we wanted to fight for him. Plans were made for a tracheotomy, and what a day that was, seeing his little face with no tubes for the first time. And praise God, at least up to this point, his ribs have grown right along with him.
God continued to do so many wonderful things at the hospital, giving His peace and strength when I felt exhausted. After hours of holding Michael and pumping, I would head to the restroom, banging my hands on the stall and crying, “How can I keep going? How long can we be separated as a family?” All the while, I wondered how long we would have with him. I even started to plan a few things for his funeral. But dear Jesus kept us, providing what we needed. We continued homeschooling with the help of different babysitters as well as family. Meals and gift cards were given, sometimes from people we had never met.
One night, early in our hospital stay with Michael, James was reading the Psalms when these verses from Psalm 35:9-10 stood out to us: “Then my soul will rejoice in the Lord, exulting in his salvation. All my bones shall say, O LORD, who is like you, delivering the poor from him who is too strong for him, the poor and needy from him who robs him?” (ESV)
God gave us such assurance with this Scripture! First, it was saying that our soul, not our deformed or broken body, that will rejoice in the Lord, exulting in HIS salvation, This reminded us again of the song He kept in my heart during labor.
And second, “all my bones shall say, O LORD who is like you…” Michael’s name means “Who is like God?” All his curved and imperfect bones, which the doctors worried would not sustain life, now proclaim, “Who is like God?” Michael’s life declares God, from his name to his broken body. God can and will use whatever He desires to proclaim and glorify Himself.
To bring Michael home, we had to train at the hospital for four months. Another person was required to train with us, and the Lord provided through a dear sister-in-law. We also had to secure night nursing, as he would need 24/7 care at home, and we would need sleep. Despite it being during Covid, God made a way when there seemed to be no way. I posted his picture and request online, and after about 1,300 shares in a week or so, we had 30 nurses interested. I brought that list back to the hospital, and they were shocked and asked, “How?” I said, “It was God.” Eventually, we had the eight or nine nurses that we needed, and they were an amazing fit, as have been all the nurses we have hired since then.
Finally, we brought him home, and it was one glorious day! Meeting his siblings for the first time was amazing. We knew we might only have a few months together, but he just kept thriving and surpassing everyone’s expectations. His medical care added an extra three hours of work to my day, but it was absolutely worth it.
After a few months at home, he started to push himself up onto his hands, then began sitting up at 18 months. He walked around furniture at 2, and at 2.5 years old, he took his first steps. We kept being amazed. In January 2024, he came off the ventilator during the daytime, which was a huge step, one we never dreamed of. We were much more mobile without having to lug that vent wherever we went. Michael is very smart, and while nonverbal because of his trach, he is learning American Sign Language (ASL) and uses Augmentative and Alternative Communication on his iPad. He understands pretty much everything you say and is now being homeschooled three mornings a week by a couple of dedicated nurses. He has the best sense of humor and loves to show us what he has learned. Chris, from YouTube’s “Special Books by Special Kids,” recently interviewed Michael and our family, which was a wonderful experience (https://www.youtube.com/watch?v=3Uxq9ROFqvo).
Our church family has been incredibly supportive. Even during church services, when alarms went off while he was on the vent, everyone was so gracious—we would sit at the back, trying to be as quiet as possible. They always included him and cheered him on.
We went through some frightening times at home, the first and worst being on Michael’s one-year anniversary at home. His vent tubes became tangled, pulling out his trach and causing him to completely lose his airway. We did what we had been trained to do, but when your son is pale and unconscious, only God can bring him back without any permanent damage. We cried out to Him while resuscitating Michael and waiting for the ambulance, and Michael recovered incredibly. Another time, I was home with the children when he pulled off his trach ties, and we had to resuscitate him again. Praise God for His mercies. Our children have been amazing as we have navigated both emergencies and daily care. They have learned how to suction and clear his airway, even our nine-year-old can do it. Even our two-year-old tells me when “Michael needs a suction.” Now, with two brothers who have special needs, they have truly risen to the challenge of loving and treating them well, yet the same. There have been many sacrifices for each of them, but they are all so proud of and grateful for their little brothers.
I constantly find myself operating with my mind and adrenaline working harder than I’d prefer. As a mom, you already have those proverbial “eyes in the back of your head,” but now my ears have become like “elephant’s ears,” always attuned to Michael’s breathing, the alarms, or his silent cries. Even in the middle of the night, I’ll sit up in a panic when I hear an alarm go off. I know his night nurse is watching him, but my heart still races. The trauma is real, and it’s such a delicate balance to trust God completely while also remaining fully aware of whether Michael is breathing and safe. Life has become much more complicated, and at times, it’s lonely since I have had to step away from being as involved in our church as I once was. Nevertheless, I know that God has called me to the ministry of my family and to be faithful in that.
When Michael began walking, I tried hard to see it as a potentially temporary gift. Another child in the United Kingdom with this condition often fractures his bones and is no longer mobile. I hoped that would not happen to us. But this past year, Michael has fractured both of his legs and his right arm. After the first leg break, it took six months for him to walk again, and then, eight months later, another leg break occurred. We are in the early stages of walking again, and I am once more holding that gift loosely, knowing he may eventually be wheelchair-bound. Allowing him to be as mobile and independent as possible, without being helicopter parents, especially since we have nine other children, is a daily challenge.
We have no idea what the future holds for any of us. However, when you are working hard to keep your son alive, it makes you treasure the gift of life that much more, not to mention the excitement of the joy and wholeness of heaven. Each day, I am learning a little more about what faithfulness looks like, both in God’s example to me and in what I am called to do. He who has called us is faithful to complete it, whether it is here or in heaven. We are called to be faithful with whatever He gives us, remembering what He has done so that our faith is made stronger and He is glorified.