Friday, March 6, 2009

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.



  1. Amazing! Possibly one of the most profound things I have ever read. I so appreciate your honesty. Sharing things that so many wouldn't want to admit. Selfless? Not sure I do anything completely out of selflessness.

    This may bring little comfort but Matt is bringing you great rewards here and now. People are drawing closer to Jesus because you are willing to share. But tonight, I am praying that God would you give you the desire of your heart: a smile.

    With much love and admiration,

  2. Have been following Matty's story since he came into your love.

    Thank you so much for sharing your heart with us. God is really showing you so much and thru you and your love for Matty and your words, God is showing us so much too.

    Praying for you R & S, and for your precious family.

  3. Just found your blog. What a treasure your story (and Matt) is for all of us.

    I would like to help him with his development. Please drop by and send me a private message through my Profile page.

    Rodger Bailey

  4. R, thank you so much for sharing. what a powerful story you have. you all are in my prayers! thank you for your honest words. i am learning about myself and the Lord through your story. it makes me think more deeply about what i expect from the Lord. thank you again for your words. you really can see the love you have for Matt and the love the Lord has for you through your story. thank you

  5. Your honesty and love for Matt touch my heart in this post. Gods Plan is not always an easy road to walk, but I see you walking it with all you have in you. Matt is a gift of God, as this blog is named, and you are the ones who are taking care of this little treasure for Him. I don't see your desires to see him respond to your love as selfish at all. The desires come from a "Mothers Heart". God has given you this heart and the love to keep Matt safe. I fear to think of the alternative of him being institutionalized. I know that Matt, in his own God created way, feels the warmth and love you give him. It's an inside job between Matt and his Creator, and you are the vessel through which it flows. God sees all you do and knows your heart. He does not expect perfection from you; He has given perfection to you in a little treasure named Matt. I will continue to pray for you to have Gods strength every moment you have with this little gift. You are teaching many here by your honesty and dedication. It does not go unnoticed. God Bless You.

    Love and Hugs, Laurie

  6. Beautiful post....I pray for you and Matty Matt every day.

  7. I am uncomfortable here in my own sin that this post brought to heart. I too am selfish...never thought of myself in this way.
    You are constantly in my prayers. You are being faithful to the calling HE put on your hearts. That blesses the LORD and encourages me. Thank you.

  8. The beauty in your words has brought me to tears.

    Thank you for sharing your story and for sharing Matt with the rest of us. We are blessed to know all of you. God is glorified!

  9. You are an amazing picture of a God fearing woman. Thank you for being so completely unedited and raw in your post. Matt has taught us all a lot. We pray for you guys daily.

  10. It was good to see you at the park today...and to read this. I am under the same conviction about sin and self. Thank you for this fine expression of practical theology. -Ruth

  11. I have been praying for you, Matt and your family. He is so precious.

  12. Simply beautiful. I just found Matt's story through Safe Haven (, and will pray for he and your whole family!!

    I also help with another blog: Preserving a Generation ( We think guest-writers are amazing... I would LOVE to have you write an article about adoption/ the Father's heart for little ones/ or whatever else is on your heart!!

    You can email me at

  13. what a beautiful post. and so true about how i view my treasures in heaven. i bet if i was caring for matt, God would show me where i was seriously lacking in the return of my investmet kind of heart.
    thanks for your transparency. blessings to you as you continue on this journey.
    press on, and so thankful for our Father's care for you.

  14. I happened upon your blog through Kristy's (Waiting for Happy). Thank you for sharing Matt's precious life. And, I am so so sorry for the suffering you have all endured. I rarely comment, but, after reading this entry, I just had to. Thank you so much for your honest search for truth in suffering and your eloquent sharing of it. I share your thoughts exactly and loved reading how you expressed them. My heart breaks for you, but am blessed by the wisdom you have gained, and the story Matt has left behind. (I will have to read the rest of it) :)

    Thank you.