We don't know quite where we are with Matt, but it looks as though we are in the last stretch. The last two weeks have been very difficult for all of us. Please continue to pray God would be glorified in the midst of our suffering and the separation to come.
"r"
Wednesday, April 15, 2009
have you ever
seen such a perfect little face.... matt turned 3 months old a couple days ago. i'll let "r" update on how he's doing, but please continue to pray for him and for the family. just wanted to post a pic of the munchkin.
Thursday, April 2, 2009
please help protect health care provider's right of conscience
dear all:
The Obama Administration is in the process of eliminating the protections in place to affirm health care provider's right of conscience. Before the Administration can remove these protections through the U.S. Department of Health and Human Services, the Department must take public comment. You can comment up until April 9th by accessing the following website:
http://www.freedom2care.org/
Simply click on the appropriate button, "Patient" or" Health Care Provider," at the top of the web page under the heading, "Send My Message to the Government."
Regardless of our varying positions on abortion, I think we can all agree that we want our health care providers to be free to utilize their moral and ethical faculties when providing our care.
Please take action immediately. You can learn more about the issue and view the legislation to be rescinded at the above cite. The Christian Medical and Dental Associations (CMDA) has also prepared several videos on the issue available at: http://www.cmda.org/AM/Template.cfm?Section=Right_of_Conscience&TEMPLATE=/CM/ContentDisplay.cfm&CONTENTID=21504
This may not seem to have a lot to do with Matt, however, we believe this has everything to do with maintaining the freedom to object to participating in the elimination of babies just like Matt. By taking Matt into our home, we hope to in some small part follow the biblical mandate to overcome the evil of unwanted and orphaned children through the good of adoption. (Romans 12:21). The following is a statement by Mother Theresa that I believe sums up the connection b/w loving Matt and protecting the free NOT to participate in what we believe is unethical behavior:
--STATEMENT BY MOTHER TERESA SENT TO THE CAIRO INTERNATIONAL CONFERENCE ON POPULATION AND DEVELOPMENT ON SEPT. 9, 1994
Loving Matt hurts like crazy, but I am confident this pain is a sacrifice God will use to bring joy and peace to all of us. Please help us to continue this work by allowing health care providers such as my husband to practice within the constraints of "do no harm."
"r"
The Obama Administration is in the process of eliminating the protections in place to affirm health care provider's right of conscience. Before the Administration can remove these protections through the U.S. Department of Health and Human Services, the Department must take public comment. You can comment up until April 9th by accessing the following website:
http://www.freedom2care.org/
Simply click on the appropriate button, "Patient" or" Health Care Provider," at the top of the web page under the heading, "Send My Message to the Government."
Regardless of our varying positions on abortion, I think we can all agree that we want our health care providers to be free to utilize their moral and ethical faculties when providing our care.
Please take action immediately. You can learn more about the issue and view the legislation to be rescinded at the above cite. The Christian Medical and Dental Associations (CMDA) has also prepared several videos on the issue available at: http://www.cmda.org/AM/Template.cfm?Section=Right_of_Conscience&TEMPLATE=/CM/ContentDisplay.cfm&CONTENTID=21504
This may not seem to have a lot to do with Matt, however, we believe this has everything to do with maintaining the freedom to object to participating in the elimination of babies just like Matt. By taking Matt into our home, we hope to in some small part follow the biblical mandate to overcome the evil of unwanted and orphaned children through the good of adoption. (Romans 12:21). The following is a statement by Mother Theresa that I believe sums up the connection b/w loving Matt and protecting the free NOT to participate in what we believe is unethical behavior:
Each one of us is here today because we have been loved by God who created us and our parents who accepted and cared enough to give us life. Life is the most beautiful gift of God. That is why it is so painful to see what is happening today in so many places around the world: life is being deliberately destroyed by war, by violence, by abortion. And we have been created by God for greater things - to love and be loved.
I have said often, and I am sure of it, that the greatest destroyer of peace in the world today is abortion. If a mother can kill her own child, what is there to stop you and me from killing each other? The only one who has the right to take life is the One who has created it. Nobody else has that right: not the mother, not the father, not the doctor, no agency, no conference, no government.
I am sure that deep down in your heart, you know that the unborn child is a human being loved by God, like you and me. How can anyone knowing that, deliberately destroy that life? It frightens me to think of all the people who kill their conscience so that they can perform an abortion. When we die, we will come face to face with God, the Author of life. Who will give an account to God for the millions and millions of babies who were not allowed to have the chance to live, to experience loving and being loved?
God has created a world big enough for all the lives He wishes to be born. It is only our hearts that are not big enough to want them and accept them. If all the money that is being spent on finding ways to kill people was used instead to feed them and house them and educate them - how beautiful that would be. We are too often afraid of the sacrifices we might have to make. But where there is love, there is always sacrifice. And when we love until it hurts, there is joy and peace.
--STATEMENT BY MOTHER TERESA SENT TO THE CAIRO INTERNATIONAL CONFERENCE ON POPULATION AND DEVELOPMENT ON SEPT. 9, 1994
Loving Matt hurts like crazy, but I am confident this pain is a sacrifice God will use to bring joy and peace to all of us. Please help us to continue this work by allowing health care providers such as my husband to practice within the constraints of "do no harm."
"r"
Saturday, March 21, 2009
planned parenthood
One verse keeps running through my head as I think about announcing our current pregnancy, “You can make many plans, but the Lord’s purpose will prevail.” Proverbs 19:21 (NLT).
While only half of American pregnancies are intentional, virtually all adoptions are the product of a long planning processes. We managed to unintentionally buck the trend and have done it all backwards: we planned the pregnancy and were surprised by the opportunity to adopt Matt into our family. Matt’s adoption could hardly be planned as no one but his mother even knew he existed until the day of his birth, and he did not become “unadoptable” via agency placement until his terminal diagnosis was made, 24 hours after his birth. While we had long talked of adopting at some point, we certainly had not foreseen imminent adoption in our future on the morning of January 13th.
In fact, up until we learned that Matt had been born, we had been pursuing our goal of a biological third child. Of course, all such plans were necessarily abandoned when we learned of Matt. The stakes for our children, for our hearts, for Matt, and for God's glory were so high, we had a hard time doing anything but praying and seeking counsel. In fact, we have never been more blindsided or desperate for wisdom than we found ourselves to be when Matt was born and his horrific illness became apparent. All of the sudden, wisdom truly became more precious than gold. On the one hand, we knew if we didn't take Matt home with us, he would be institutionalized and likely neglected. On the other hand, we had been clearly warned by a number of experienced counselors that if we brought Matt home, our children would suffer neglect of a different but perhaps more mindful sort. Torn between our already existent children, any thoughts of introducing further complications to our tortured tale were happily discarded.
In the end, our counselors agreed with us that bringing Matt into our home within a strict system of accountability was in line with the scriptural "purposes" God has laid on our hearts. At the time, we informed our social worker and others that there was a possibility that we had become pregnant prior to Matt's birth, and they all agreed that bringing Matt home was purposed despite the complexities that pregnancy would present.
Two weeks after we brought Matt home, we found out that I was pregnant. Not long after that, Matt was admitted to the hospital for a possible "miracle cure," which turned out to be something less than miraculous. In fact driving to the hospital the morning of Matt's hospitalization, I was wondering how we would fit four children into the backseat of our tiny Corolla. On the way home from the hospital--with Matt's terminal diagnosis apparently solidified and strong evidence that I was losing the pregnancy--the backseat looked far too big. Two children apparently lost in a matter of hours.
Today, both Matt and the pregnancy are progressing nicely. We haven't actually lost either of them yet. I honestly have no idea what that means except that they both have heart beats and are both growing as expected. We have no idea how all of this will end or even what tomorrow will look like. Questions such as, "Do we need a bigger car? If I buy a stroller, should I get one to accommodate twins? Will we need two infant car seats? Will we have two special needs children and for how long? Was it really a TORCH infection?" roll around in my head with no ready answers. We just don't know what tomorrow will bring. We do know, however, that God is sovereign over all things including Matt and the baby fluttering around inside.
God is sovereign over life and death, which is why "planned parenthood," just like planned anything else ultimately implies an element of human control which does not jive well with the truth of God's sovereignty as portrayed in scripture. It is error to take life when it has been given, and it is equal error to demand life when it is taken. God gives and He takes away, blessed be His name because He knows better than we do what we really need. He knows and directs what is best for us, which can sometimes be very difficult for us planners to accept.
In short, we are somewhere between 12 and 13 weeks gestation, having conceived this little one just two days before Matt's introduction to the world. Nothing has ever been more physically demanding than the last three months have been on our bodies. Why God would allow events to transpire as they have I cannot tell you. I can assure you that despite the ridiculousness of our situation, God has clearly brought us to this place through a number of wise counselors and constant and desperate pleas for wisdom, which according to James 1:5 he has promised to answer affirmatively. This situation was not planned, but it has been directed from the outset:
This is what the LORD says-- your Redeemer, the Holy One of Israel: "I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17 (NLT).
Praise God that He knows where we are going. I am confident that wherever we go, we will be humbled by God's sovereignty over all things, including parenthood, and encouraged by our ongoing need for the gospel of grace as we raise our now three and soon--if God wills it--four children.
"r"
While only half of American pregnancies are intentional, virtually all adoptions are the product of a long planning processes. We managed to unintentionally buck the trend and have done it all backwards: we planned the pregnancy and were surprised by the opportunity to adopt Matt into our family. Matt’s adoption could hardly be planned as no one but his mother even knew he existed until the day of his birth, and he did not become “unadoptable” via agency placement until his terminal diagnosis was made, 24 hours after his birth. While we had long talked of adopting at some point, we certainly had not foreseen imminent adoption in our future on the morning of January 13th.
In fact, up until we learned that Matt had been born, we had been pursuing our goal of a biological third child. Of course, all such plans were necessarily abandoned when we learned of Matt. The stakes for our children, for our hearts, for Matt, and for God's glory were so high, we had a hard time doing anything but praying and seeking counsel. In fact, we have never been more blindsided or desperate for wisdom than we found ourselves to be when Matt was born and his horrific illness became apparent. All of the sudden, wisdom truly became more precious than gold. On the one hand, we knew if we didn't take Matt home with us, he would be institutionalized and likely neglected. On the other hand, we had been clearly warned by a number of experienced counselors that if we brought Matt home, our children would suffer neglect of a different but perhaps more mindful sort. Torn between our already existent children, any thoughts of introducing further complications to our tortured tale were happily discarded.
In the end, our counselors agreed with us that bringing Matt into our home within a strict system of accountability was in line with the scriptural "purposes" God has laid on our hearts. At the time, we informed our social worker and others that there was a possibility that we had become pregnant prior to Matt's birth, and they all agreed that bringing Matt home was purposed despite the complexities that pregnancy would present.
Two weeks after we brought Matt home, we found out that I was pregnant. Not long after that, Matt was admitted to the hospital for a possible "miracle cure," which turned out to be something less than miraculous. In fact driving to the hospital the morning of Matt's hospitalization, I was wondering how we would fit four children into the backseat of our tiny Corolla. On the way home from the hospital--with Matt's terminal diagnosis apparently solidified and strong evidence that I was losing the pregnancy--the backseat looked far too big. Two children apparently lost in a matter of hours.
Today, both Matt and the pregnancy are progressing nicely. We haven't actually lost either of them yet. I honestly have no idea what that means except that they both have heart beats and are both growing as expected. We have no idea how all of this will end or even what tomorrow will look like. Questions such as, "Do we need a bigger car? If I buy a stroller, should I get one to accommodate twins? Will we need two infant car seats? Will we have two special needs children and for how long? Was it really a TORCH infection?" roll around in my head with no ready answers. We just don't know what tomorrow will bring. We do know, however, that God is sovereign over all things including Matt and the baby fluttering around inside.
God is sovereign over life and death, which is why "planned parenthood," just like planned anything else ultimately implies an element of human control which does not jive well with the truth of God's sovereignty as portrayed in scripture. It is error to take life when it has been given, and it is equal error to demand life when it is taken. God gives and He takes away, blessed be His name because He knows better than we do what we really need. He knows and directs what is best for us, which can sometimes be very difficult for us planners to accept.
In short, we are somewhere between 12 and 13 weeks gestation, having conceived this little one just two days before Matt's introduction to the world. Nothing has ever been more physically demanding than the last three months have been on our bodies. Why God would allow events to transpire as they have I cannot tell you. I can assure you that despite the ridiculousness of our situation, God has clearly brought us to this place through a number of wise counselors and constant and desperate pleas for wisdom, which according to James 1:5 he has promised to answer affirmatively. This situation was not planned, but it has been directed from the outset:
This is what the LORD says-- your Redeemer, the Holy One of Israel: "I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17 (NLT).
Praise God that He knows where we are going. I am confident that wherever we go, we will be humbled by God's sovereignty over all things, including parenthood, and encouraged by our ongoing need for the gospel of grace as we raise our now three and soon--if God wills it--four children.
"r"
Friday, March 20, 2009
the gang
this is from a few weeks ago. we were lucky to get to have "r"'s sister and her kiddos in town. so we took the crew to a park to wreak havoc for a few hours. this was about three minutes before we were "all done." and to note, these are only a few of the precious little children who love little matty matt.
little blessings
i was so blessed this week. we were out in the driveway for our typical 4 o'clock, let the kids roam until the dads get home, hang out experience. and little matt was up to something. that boy was just talkin' and talkin'! ok, not TALKING. but cooing and gooing and it sure seemed like he was interacting with "r" in ways we hadn't seen in a long time. or ever! these moments are few, but they are so precious. we know they won't last forever, so in a frenzy, i grabbed the camera, to help make them last even a BIT longer.... (oh you have to click on the images to see them in full. not sure why.)
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.
"r"
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"
Subscribe to:
Posts (Atom)
