legal guardianship

We now have legal guardianship of Matt. Thanks to the generosity, skill, and kindness of our lawyer and friend, "R," Matt's guardianship hearing was more of a "date" than a chore. "S" had to be there, which meant he was forced to steal a few minutes away from work, which was a wonderful treat for both of us.

Matt's physical condition continues to deteriorate as expected. He appears to be blind, though his eyes will still respond to bright flashes of light, and his hearing seems to be diminished as well. As we approach his two-month birthday, it becomes increasingly apparent that he has not met a single milestone. While we had been told this would be the case, it is nonetheless disappointing to see little earthly reward for our investment.

I would like to tell you that Matt never suffers, but that would be a lie. His suffering is minimal now due to a complex regiment of medications, positioning, and massage. Nevertheless, he does suffer at times. If he did not experience periodic discomfort, we would likely be overdoing the medications. So, we continue to work round the clock with our dedicated team of physicians, nurses, and therapists to figure out how to respond to Matt's ever changing needs. We do this despite the fact that we know we will never really understand, much less cure, Matt's illness.

Even if we will never really understand all the ins and outs of this disease, we are learning to understand Matt. He is basically blind, and he makes only negative or neutral expressions with his voice and face. Despite these limitations, we have learned to adjust his care by paying close attention to the peaceful expressions he is capable of making. I now know just how to hold him, lay him down, snuggle him, and feed his so that he is most comfortable and at least risk of choking. In some ways, carrying for him is simple. If you think of how you would like to be held and cared for when you have a terrible headache, then you will have a good idea of Matt's basic likes and dislikes. He doesn't enjoy sudden movements, loud noises, or being bounced or jiggled. He doesn't enjoy rocking--unless it is ridiculously slow. He doesn't even enjoy being walked down the stairs, as his Moro or startle reflex causes him to jerk spastically with every step. He does, however, like the sounds of his family, and I have convinced myself that he knows when I am holding him because he relaxes so dramatically.

In any event, Matt's head continues to grow and his prognosis continues to worsen. As it does, we are forced to turn our eyes all the more towards heaven. We have no choice. Either we focus on the hope that is to come or we drown in the despair of the moment. God is good, but He is not a genie. His ways are not our ways, and His plans ultimately push us beyond hope in the created world to the Creator Himself. I never knew how tied to this world I was until I began to care for Matt. I know now in a new way that even my seemingly selfless acts are absurdly selfish.

Matt doesn't respond positively to all the love and care we shower on him, and despite the fact that I knew in my head he wouldn't, I still want him to smile back at me. Instead of smiling, he either stares at me blankly or screams in response to my best efforts to communicate with him. The discouragement I feel at his failure to thrive only evidences the selfishness of my endeavors. Before Matt, I was tempted to believe I loved my children with at least an inkling of selflessness. I now know that I expect at least some return for my investment. At the very least, I would like a two-month smile and a 3-month squeal of delight in response for the long nights and endless feedings. I am humbled further to think of the earthly reward I am tempted to expect from my older children. Each day with Matt, it looks more and more like all of our reward is being deposited in heaven (or not, because God loves a cheerful giver, and sometimes, I am just not). Frankly, I am not all that happy about the choice of accounts. While I may have previously thought I wanted to deposit all of my treasure in heaven, I now know I am more or a 50/50 or even 25/75 kind of girl. I would like some treasure in heaven and most of it here.

It may be this very realization of further indwelling sin that God seeks to remedy in part through our love of Matt. I once thought we were called to care for orphans and widows in their distress because by caring for them, we would see buckets of fruit in our own lives. I now believe, we are called to selfless acts because in our attempts at selflessness, our selfishness is exposed. I am utterly incapable of selfless love apart from Christ at work in me. So, exposed and helpless in the wake of selfishness, I, like all of us, have no choice but to rest completely in Christ for salvation. By faith alone, we are saved. Through our attempts at "good" works, we become all the more aware of our need for salvation. Praise God that His grace and love cover us completely and instill in us the hope of heaven!

It is sin to seek self above the good that God has willed for our lives. Sin separates us from the love that Christ has for us. It is this very separation--the separation that death embodies--that Christ died to overcome. Death stinks. We all hate it, but God more than hated death. He did something about it. Jesus came to overcome death once and for all at the cross. Our hope isn't in life now. Our hope, like it or not, is in heaven. Our hope is not in miracle cures, our hope is in a sound doctrine of suffering that begins and ends in the cross.

So, I am thankful for Matt because he has further exposed the blackness in my heart and my need for the the forgiveness found in Jesus. I am sick because I seek physical healing, signs and wonders, rather than the One to whom the signs point. Jesus is our hope. Spiritual healing is our calling and our destiny in Christ. Someday I will watch Matt run and play and laugh. Until we finally make it home, we rest in His finished work and long for its realization in heaven.

"r"