20th Anniversary Reflections
We’ve recently marked the 20th anniversary of the day my son became critically ill with a disease that would leave him stricken by multiple disabilities. His life, our family, all our lives were drastically and severely changed that day - in ways that we wouldn’t fully understand till much later. My son, a happy, healthy, active toddler - after 4 months in the hospital - would return home unable to walk, talk, feed himself, or sit up independently. His kidneys failed, his brain filled with fluid, and he was partially paralyzed by cerebral palsy. His twin and older sisters barely recognized the boy that came home as the lively, energetic brother they’d known and loved.
It’s hard to fathom that we’ve been on this journey for this long. I recall so clearly sitting in the hospital those 20 years ago praying, hoping, expecting that, as quickly and suddenly as this illness had struck, it would just as quickly run its course and be gone. Regretfully, that would not be our story.
I used this “anniversary” to reflect on all that’s happened - to gain some insight on what I’ve learned and how I’ve grown - with an eye towards how my experiences might be of value to someone else on their journey. Here are the things I’ve learned that helped me the most. I hope they help someone:
To whom much is given, much is given. For every person affected by special needs or disability, there is great grace (strength) for it. I’ve learned to tap into that grace for myself and on my son’s behalf. When we are at our weakest, God’s strength really does show up - every time.
I have great influence with my son and how he experiences his world. He looks to me in any given situation for cues about what to expect and how to respond. I must be careful not to mishandle such great trust.
A disabled body or mind does not mean a disabled spirit. So I speak life to my son’s spirit; and, he expresses a joy that disability has not been able to steal.
All my kids need me (not just my son) to enable them to THRIVE.
My husband and I have to be partners in this. We may see and process things differently, but we both bring strengths and perspective to our family’s needs that are greatly needed. We also need each other, so we have to work on our relationship so our needs are met as well.
I know that God has a plan for all His children. So, regardless of the circumstances, I trust God to fulfill His purposes in, for and through my son.
In every season I’ve held onto the the hope that tells me that today could be the day when God changes something miraculously - because I know He can. AND while fully holding onto that hope, I know that God is the only One who knows His plans and timing for my son. So, in faith, I continue to put one foot in front of the other in the reality of today, trusting God to enable me to do everything I can for today.
A family living with disability doesn’t have to live a disabled life. This realization took us a long time. We are learning everyday that it is possible to create a full, meaningful, enjoyable life for EACH of us and ALL of us. We’ve chosen to live our own UN-disabled life.
Some of the tidbits from my journey… What about you? What are some things you’ve learned or ways you’ve grown on your family’s special needs journey?