Philippians 2:5, 7: "Your attitude should be the same as that of Christ Jesus, who... made himself nothing, taking the very nature of a servant."
Tomorrow marks the one-year anniversary of Timothy's tracheostomy. Back when everything was new, I used tell myself that, by a year's time, I would be adjusted and no longer living in crisis. To some extent, this is true. But does it mean I don't feel a tug on my heart every time I see a healthy newborn? No. Does it mean I can hear another infant laugh or coo while my son remains silent, and not long to hear his voice? No. Does it mean I can watch a baby nurse while my son takes milk through a tube, and not cry later? No. Does it mean that everything is fine now? As much as I try to convince myself that it is - it is not.
It has been a year of stages - denial, panic, depression, acceptance, endurance. The chronic, heavy, sick feeling of the early hospital days has been replaced with a steady yoke of labor, busyness, and, often, fatigue.
During Timothy's recovery in the Pediatric Intensive Care Unit, the comment was made to me, "What a calling God has given you." Never had I expected God's call on my life to involve caring for a baby with medical needs. I had trained as a classical musician and was sure that God's "calling" would be something much more exciting, interesting, fitted to my passions and pleasures, and aligned with my talents. I had no interest in medicine, no natural ability, and nothing to draw me to it other than the necessity to preserve my son's life. But why did I never expect that God might call me, His child, to a task that only He could accomplish (through me)?
It would be so easy for me to dwell on the things I have lost: my freedom, rest, free time, social life, normalcy (whatever that is). There is no way to explain the helpless feelings, the day-to-day toil, the frantic scrambling to keep up, the loneliness that inevitably results from meeting Timothy's needs around the clock. I have gotten used to the stares, questions, and uncomfortable silences in public, but it is the private times, the times that no one can share or understand, that are the hardest.
So what keeps me going? Right after Timothy was born, a friend wrote and gave to us an imaginary dialogue between Timothy and God. "Is it going to be OK God?" Timothy asks. "Well Timothy, right now you're a little young to understand, so let's just say that I've picked out someone real special to take care of you," He replies. God chose us to care for this child. Nothing else matters more than God's will. "Thy will be done, on earth as it is in heaven," we pray. Do we really mean it? When God's will is this clear, will we accept it and bear it with thankfulness, endurance, and joy? "In everything give thanks, for this is God's will for you in Christ Jesus." I can be honest about the hard parts of caring for my son, but in the end I must die to my own selfish desires and live for Him whom I call Lord. I must fix my eyes on Jesus, who for the joy set before Him endured the cross. I can say nothing in comparison to His suffering.
And if Timothy could speak, what would he say? I believe he would thank us for putting him first, for not giving up on him. I believe he would encourage us to persevere, to trust and honor God, for in the end there will be a reward. So this is what we do. And I pray that someday Timothy, too, will praise the God who gave his parents the strength to do it.
