I’m a firm believer that nothing we experience falls outside the realm of God’s all-knowing, merciful care. My husband’s 15-year battle with MS gave us an opportunity to see first hand how God’s loving kindness was ever with us, regardless of how incredibly hard the road which led to Chris’s death in October, 2009 was.
Despite our continual awareness of God’s grace, the burden we carried every day was a heavy one—the logistical needs of Chris’s special diet (homemade everything, no wheat, no processed foods, juicing, etc.), plus helping him each day with multiple personal needs (dressing/undressing, helping him on/off his scooter, in/out of his car, etc.) became a big part of our “homeschooling curriculum”. The constant disruptions to the academic side of our homeschooling discouraged or frustrated me, if not every day, at least every week during school each year.
Then there was the emotional toll Chris’s MS took on us all. His anguish over his failing body melted our hearts often. My seven children sometimes verbalized a wish that they could each take his MS for one day a week so Daddy could have a break. At other times, my kids dreamed about having a normal life—longing for the opportunity for a job outside the home, and to engage in extracurricular activities which the daily needs of their dad could not afford.
Even still, we experienced joy as we served my husband together. Knowing we were helping him stay in the race and continue to serve homeschoolers through his work as HSLDA’s Senior Counsel gave us a strong sense of purpose. Surprising, as well, was the effect suffering had on us—it helped us embrace in life what was most important, it reminded us again and again of God’s daily presence and help, and it united us as a family on a very deep level.
Chris’s sudden rapid decline the last year of his life, following a car accident by a hit-and-run driver was one of the hardest experiences of my life. In January, 2009, the onset of hypothermia—a continual drop in Chris’s body temperature, from 97.6 to 92-93 degrees—over the course of 10 months brought on a whole host of new symptoms he had never experienced. He suffered short-term memory loss, had difficulty processing what we said to him, and became more lethargic and less responsive. Anyone who spent time with Chris that year was shocked because they knew him to be full of life and zest and passion for the Lord.
My husband’s last few weeks with us were punctuated by an abrupt drop of his temperature to a dangerously low 85.8 degrees. Placed in intensive care, the doctors were very surprised when the hypothermia didn’t kill him right then. He even rallied after a 24-hour period at death’s door, and his temperature came back up to his “normal” 93 degrees. I was grateful to be there monitoring his temp in the hospital as I had been doing that whole year; his situation was so unique the doctors didn’t know what to be watching for.
Though Chris miraculously rallied, his body had suffered damage from a virulent bladder infection and pneumonia caused by a week of severe hypothermia, and as a result, his organs were in the stages of shutting down. He was with us only two more weeks.
During the 15 years my husband had primary progressive MS we knew we could lose him at any time. While I am thankful Chris lived 15 years after his diagnosis, through that long painful journey I often felt like the impending loss was more than I could bear. I tried to keep homeschooling full-time, continue caring for him with the children’s help full-time, and press on trusting God full-time. I can’t say I did any of these very well. My consolation then and now is to fall upon the grace of God, who sees all, knows all, and possesses a wisdom I will never understand and who demonstrates love toward us in a way I will never comprehend.
Yesterday I heard about a homeschooling family of 11 in Kentucky who, all but the father and one child perished in a house fire. It was a horribly tragic, heart-wrenching story of loss. It is more than we humans are made to bear.
I don’t have any answers for this poor father and daughter who have just lost all but each other. They are in critical condition. While they are predicted to survive, their lives will never, ever be the same. It brings tears to my eyes just to think of how incredibly empty they will feel, for a very long time.
All I can do is pray God helps them do what He has helped me to do—through all the pain, the end of some of my dreams for our homeschooling life, and the regular taste of death in my mouth for 15 years—unshakably hold to the knowledge that God is all-wise, all-powerful, and yes, all-good, even if I don’t understand always what that means.
“Answer me, O Lord, for Your lovingkindness is good;
According to the greatness of Your compassion, turn to me.”
Enjoy the journey...there's no place like home,