Photo image courtesy of Christian Meyn via freedigitalphotos.net
Lightning can and does strike the same place twice. Ask me how I know.
For too many years I subscribed to the delusional belief that if I endured some sort of remarkable challenge, I would be exempt from future struggles or trials. God has made it a life-long lesson to show me the error of my ways, and to reveal the incredible difference He can make with lives that are completely dependent upon Him.
Despite having one child with a chronic illness or special needs diagnosis, the Lord sometimes allows “lightning” to strike again in the same family. For some, it is a genetic illness that they discover after a child is born. There is someone very close to our family whose first child was diagnosed with cystic fibrosis while she was pregnant with the second. Both of her sons are affected. Others, like us, find that they have spun some crazy wheel and acquired a collection of different diagnoses in their children. Others build their families through adoption and walk towards those who are medically fragile.
However it occurs, those of us living with more than one child with a diagnosis under our roofs can feel like the rarest of the rare at times.
Our special needs journey began nearly 15 years ago with our second born, a son, diagnosed with severe hemophilia at birth. It didn’t end there. Although we were most concerned about having another child with this genetic bleeding disorder, our lives took some very different twists and turns. Beset with severe allergies very early in her life, our third child would end up having an entire smorgasbord of diagnoses including asthma, allergies, ADHD, SPD, and Asperger’s. Her combination of challenges have made the past 12 years anything but dull. Still, there was more to come. Three years ago our eldest, who always prided herself on being the only “normal” one in our home, began having serious joint pain. That discomfort combined with a slightly elevated ANA level has had us consulting rheumatologists for answers and treatment ever since.
God has taught us so much by allowing more than one child with a diagnosis under our roof.
There is a unique dynamic that we parents who are raising multiple kids with diagnoses confront. I am in no way downplaying the serious struggles a parent with one child with disabilities faces. Yet, if a parent feels stressed about having one child with diagnosis, that stress grows by every additional child requiring specialized medical or psychological care. If there are feelings of guilt, inadequacy, overwhelm, and concern with one child, those grow exponentially as well. The chaos can be incapacitating, yet you must move forward because there are multiple children whose lives are depending upon your advocacy and care. Shuffling priorities takes on the likeness of a triage nurse, only you don’t get to check out at the end of your shift. Sometimes an appointment for one just has to be missed because of an ER visit for another.
Then there are the times when one person’s special needs exacerbate the others. For example, when the child with sensory-seeking behaviors gets input by smacking people as she walks past them, it triggers the anxiety in the child with PTSD. When the child battling depression has their head bit off in the morning by the child whose pain is off the charts, it can be a heartbreaking start to the day. One of our worst seasons of family life came when the organic raw milk we were using to rebuild our allergy queen’s decimated immune system caused our son with hemophilia to be hospitalized with internal bleeding. Suddenly, I was regretting something that seemed so helpful and benign for one of my children, while unknowingly being nearly lethal for the other.
Working through multiple specialty groups at a Children’s Hospital definitely makes life more interesting as well. The asthma-allergy clinic has a very different approach from the hematology department. The ear-nose-throat specialist has a very distinct approach that is unlike the gastroenterology clinic. At one clinic 3 team members involved with a child’s care may be seen, while 7 team members are seen at another. Some visits take under an hour, others take half the day including labs. Each place has its own terminology, requiring a parent to develop a new area of expertise and nuanced discernment. And if a family finds themselves disheartened about treatment at one specialty clinic like we did, they may find themselves driving miles to a distant city or even out of state just for one of many doctors.
It’s all a tremendous juggling act that stretches beyond human capability. Yet, that’s where God shines the brightest. Looking at the circumstances of a family like ours, the typical person might think it would be their worst nightmare. But when they see His power made perfect in our absolute weakness, they encounter the God of the impossible situation. When we manage to create a natural family rhythm in the midst of our utter chaos, others learn that God is not a God of disorder, but of peace.
These unique experiences of a family managing more than one diagnosis call for a unique response. When Jesus admonished his disciples in Luke 12:48 stating, “From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked,” (NIV) he was speaking in context of being a good and faithful servant. This means that whatever that “much” is, whether monetary wealth or multiple children with disabilities, we are to be faithful stewards. While we may be even more prone to throwing a pity party due to the number of challenges we are juggling, our situation ought to make us so “other,” so loving to those facing trials of any type because of the rough roads we have tread, that our kindness just naturally spills out. There is no room for persistent bitterness in parents like us if we want our lives to bear God’s redemptive nature.
Ultimately, when there is more than one child with diagnoses in a family, there is more than one way for God’s light to shine through and for His story to be told. We are fools if we miss the unparalleled opportunity to fully rely on Him, allowing His perfect power to be on display in such overwhelming weakness. Multiplying knowledge of His boundless magnificence – isn’t that the BEST lightning to have strike more than once?
Barbara Dittrich
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