Fifteen years ago today, we dropped our 3 year old daughter off at our friend's house early in the morning and headed to the hospital.
After 15 hours of labor, a medical team was in my room, holding the instructions for a gentle birth and testing of cord blood over my face, so the resident could read them as I spent the final 20 minutes pushing.
Fifteen years ago today, despite having a family history of the disorder, I foolishly told people, "Surely God would NEVER give me a child with hemophilia! Have you seen my shaky hands? I could NEVER put an IV into a child's veins with these things!" [Note: NEVER say "never" within hearing range of God!]
Fifteen years ago today, I had never administered even one of the more than 2,000 IV infusions necessary to keep our son alive and healthy. I hadn't gone through the repeated ritual of cleaning the table, laying out the clean disposable pad, reconstituting the clotting factor, laying out the ancillary band-aid, gauze, alcohol swabs, saline flush, tourniquet, and butterfly needle.
Fifteen years ago today, I had not yet developed a competency in triage, identifying a bleeding episode and discerning its level of seriousness. I hadn't done range of motion tests, felt for heat in a joint, drawn a circle around a hematoma with a black marker to see if it was growing, or done a basic lab test for blood in the stool.
Fifteen years ago today, I had not managed hundreds of nosebleeds, pinching and holding for, literally, hours. I hadn't had kitchen and bathroom floors covered in raging red fear amidst shouts for help. The blessed help of Amicar had not yet been shoved up his nose on a saturated Kleenex. Repeated cauterizations had not been done in hopes of holding back the bleeding.
Fifteen years ago today, I had not lived through the repeated trauma of hospitalizations, trying not to worry myself sick over whether or not my son would survive the crisis that put him there. I had not experienced the discomfort and sleeplessness of rooming in with our boy on the most uncomfortable excuses for fold-out beds known to mankind. I hadn't crawled into a hospital bed with my child crying out in the middle of the night.
Fifteen years ago today, I had not learned to manage a child with a PICC line at home. We had not yet experienced the lost privacy of having home health care professionals coming every few days to help care for a central line or train us on infusing skills.
Fifteen years ago today, I had not yet faced hauling a child to school to attend classes in a wheelchair. Our school principal had not yet been contacted with a complaint about me parking in a disabled spot without a tag, despite the fact that everyone could see me hauling a wheelchair in and out of the back of my vehicle twice a day. A photocopy of my application sat in the windshield of my car for the police, just in case they did show up as I was maneuvering my boy into and out of school.
Fifteen years ago today, we had not sat trapped in a single, windowless exam room -- sometimes our entire family -- for 3, 4, 5 or more hours with nothing to do but watch mindless television. We had not endured the every-six-month rigor of hematology clinic with its parade of multiple professionals asking questions, giving advice, and running tests. We had not yet developed the throbbing headaches that inevitably make their appearance once we are finally turned out to return home.
Fifteen years ago today, I had not endured the frustration, anguish, and hardship of dealing with the obscene expense of raising a child with an expensive chronic illness. I had not written $1,500 checks to cover the cost of his clotting factor when our boy was less than a year old. He had not yet reached a size where he was using over $200,000 per year in clotting factor alone. I had not yet spent hours on the phone duking it out with insurance companies or our blood center over the endless bills.
Fifteen years ago today, Snappin' Ministries didn't exist. We were a "normal" family whose only real trouble was trying to have children or keep a job. While I had volunteered for years with our local hemophilia foundation to support my sister and her boys, our reach and service didn't go much farther than that.
Fifteen years ago today, I had not served thousands of families, praying, writing, speaking, planning, mentoring, and fundraising. I had not yet said, "Yes," to God in spite of the fact that I felt I knew so little about anything related to special needs or disability. I had not yet made hundreds of connections around the country to whom I could refer desperate fellow parents. I had not yet worked with teams shipping hundreds of gift baskets and thousands of dollars in gift cards to hurting parents all over this nation.
Fifteen years ago today, my heart was much smaller, because I had not yet spent years raising my remarkable young son. His incredible, loving spirit not only made my heart grow because of who he was and what he endured every day, but it also grew as he spurred me on to something greater --serving weary parents who were struggling on a similar walk.