Our entry into the world of special needs parenting was sudden. We had experienced the occasional ear infection, chicken pox, broken bone, bronchitis, etc., but serious illness had never been a part of either my husband’s life nor mine. In fact, I was brought up in a “non-medical” household (in which we prayed, rather than taking medicine or going to the doctor). Our kids had each vomited once or twice in their lifetime. We were blissfully ignorant of what it was like to care for a critically ill child.
When Katie became ill in the autumn of her 6th grade school year, we were not prepared to move into the hospital full-time, but that is what we did. We were even less prepared to be discharged to Ronald McDonald House with all of Katie’s post-chemotherapy needs, knowing that she had a large tumor in her abdomen (encasing her kidney, adrenal gland, in a lobe of her liver, filling her inferior vena cava and entering her heart). We had been told that she could die at any time from this tumor. To be discharged to Ronald McDonald House meant more togetherness, a more comfortable environment for the four of us, but it also meant a frightening degree of responsibility for Katie’s physical well-being, when she was very fragile indeed. We knew NOTHING about how to prepare and give injections, maintain a PICC line, maintain the nasal-gastric tube feeds and pump, treat severe nausea…but we learned, quickly.
You can also read this post at Hopeful Parents.