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I think that parents of special kids become more keenly aware of the needs of other parents and other special kids. This has been true lately and quite frankly, I’m feeling a bit overwhelmed with it all. I am an optimist by nature — one borne in realism, but optimistic nonetheless. However, it is hard to keep your head above water when everywhere you look other families are in crisis, too. Just today, I am carrying two families heavy on my heart.
One is a foster parenting couple from our church who foster medically fragile children. That is a special calling in and of itself. They not only provide a safe, loving place for these children while decisions are made about their future, but provide many of the home health care tasks as well. One of their current children is a very sweet baby, less than a year old, with a variety of birth defects and health problems, requiring feeding tubes, oxygen and round-the-clock care. The baby’s breathing because labored on Tuesday and she was hospitalized. Today, foster dad calls me to ask if I can babysit their four-year-old, (finally- Praise God) adopted son this afternoon so they can do an emergency briefing at the hospital. Sadly, no, I replied, because of LuLu’s own doctor’s appointment and my need to focus fully on what the psychiatrist has to say about LuLu given her recent anxiety issues and pending due process hearing.
Dad goes on to tell me that the baby’s doctor has told them and bio parents the grim news today that the baby’s condition is inoperable and will likely be terminal in the next two years. Dad’s obvious grief about this situation is overwhelming, but not surprising. This couple, like most foster parents, have a strong ability to give unconditional love to children who are likely not to be theirs in a permanent sense. I am always awed by that, and amazed at the way they can whole-heartedly embrace the bio parents as well, and cheer for their progress at learning to care for these fragile children with the goal of reunifying these special children back into their birth homes. This is true heroism in my book.
I’m on Plan B call for this family today, to possibly pick up their son after LuLu’s doctor’s appointment if no other arrangements can be made. Meanwhile…nothing to do on this end but pray.
The second family just gave birth to a son on Tues with a genetic problem called trisomy 13. I have little understanding of all this genetic disorder entails, but do know it has been a miracle that he’s even been able to be carried to full term and delivered at a healthy 6 lbs, and the mother has been struggling to make sure her unborn son had the best possible chance of making it until birth. He shows continuing signs of his disorder, the most urgent being that his digestive tract is not fully connected and he is headed to surgery today.
The more amazing thing about this family, and the reason they remain on my heart, is how they are holding up through all this adversity. There is a peace that passes understanding evident in both families. And just when I start to wallow in self-pity about my own stressful state-of-affairs, its people like these who are brought to the forefront of my life. That is NOT an accident!
The message isn’t that I have it better off than they do, but that special kids and the parents who love them know intimately how hard life is and what it takes to survive. But coupled with all that intense pain, grief, fear and sadness that to people outside of situation seems overwhelming is an equally intense joy and triumph in situations that others might not even see as significant. Parenting special kids truly changes your perspective — and makes you see the everyday heroes all around you. These two families of heroes remain in my heart – and prayers – and stand as teachers to me as to the real meaning of being a parent.
Please give that baby’s parents a hug from me. They are such awesome people. How is their other “rambunctious” one doing? He’s such a cutie!!