I still have trouble seeing other people's kids, especially those the age of Peter and younger. It is hard for me to not think, "this is what Peter should be doing" or "they have surpassed Peter already." I am still trying to accept the fact that yes, he is handicapped, and no, he will probably never catch up and be normal. Whatever normal is.
I still feel like if we had adopted a child, knowing up front that they were disabled, it would be easier, but that somehow, having expected normalcy, I haven't accepted the disability part yet.
It helps to remember Jesus, the gospel. That He took my sins for me, tasted death for me, drank the wrath of God, clothed me in His righteousness! How can I not do whatever He asks? And if He says, "Raise and love this child for Me", shall I not do it? Have I not said, "I would go wherever You send, do any job for You"? And He says, "I give you this child. He is a gift. Love him, care for him. This is what I want you to do." (and of course, love your other children and your husband, and care for them as well).
O Lord, help me. To fix my eyes on Jesus.
Saturday, September 1, 2012
Thursday, August 23, 2012
Gift
Romans 3:22-25
...the righteousness of God through faith in Jesus Christ for all who believe... for all have sinned and fall short of the glory of God, and are justified by his grace as a gift, through the redemption that is in Christ Jesus, whom God put forward as a propitiation by his blood, to be received by faith.
...the righteousness of God through faith in Jesus Christ for all who believe... for all have sinned and fall short of the glory of God, and are justified by his grace as a gift, through the redemption that is in Christ Jesus, whom God put forward as a propitiation by his blood, to be received by faith.
Tuesday, August 21, 2012
Live all for Him
2 Corinthians 5:14-15
For the love of Christ controls us, because we have concluded this: that one has died for all, therefore all have died; and he died for all, that those who live might no longer live for themselves but for him who for their sake died and was raised.
2 Corinthians 6:3-10
We put no obstacle in anyone's way, so that no fault may be found with our ministry, but as servants of God we commend ourselves in every way: by great endurance, in afflictions, hardships, calamities, ... sleepless nights... by purity, knowledge, patience, kindness, the Holy Spirit, genuine love; by truthful speech, and the power of God; with the weapons of righteousness for the right hand and for the left; ... as sorrowful, yet always rejoicing; ... as having nothing, yet possessing everything.
2 Corinthians 4:7-10
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair... that the life of Jesus may also be manifested in our bodies.
He died for us, that we might live for Him. In our present circumstances, troubles, weariness, to proclaim Jesus as Lord, by the power that can only be from Him. This is what He calls us to - not primarily to some great sacrifice, but to this: to commend Him by all our thoughts, words, deeds, in the midst of affliction, pain, being perplexed.
For the love of Christ controls us, because we have concluded this: that one has died for all, therefore all have died; and he died for all, that those who live might no longer live for themselves but for him who for their sake died and was raised.
We put no obstacle in anyone's way, so that no fault may be found with our ministry, but as servants of God we commend ourselves in every way: by great endurance, in afflictions, hardships, calamities, ... sleepless nights... by purity, knowledge, patience, kindness, the Holy Spirit, genuine love; by truthful speech, and the power of God; with the weapons of righteousness for the right hand and for the left; ... as sorrowful, yet always rejoicing; ... as having nothing, yet possessing everything.
2 Corinthians 4:4-5
In their case the god of this world has blinded the minds of the unbelievers, to keep them from seeing the light of the gospel of the glory of Christ, who is the image of God. For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake.
In their case the god of this world has blinded the minds of the unbelievers, to keep them from seeing the light of the gospel of the glory of Christ, who is the image of God. For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake.
2 Corinthians 4:7-10
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair... that the life of Jesus may also be manifested in our bodies.
He died for us, that we might live for Him. In our present circumstances, troubles, weariness, to proclaim Jesus as Lord, by the power that can only be from Him. This is what He calls us to - not primarily to some great sacrifice, but to this: to commend Him by all our thoughts, words, deeds, in the midst of affliction, pain, being perplexed.
Tuesday, August 14, 2012
This cup
"Fear not, for I am with you! ... When you pass through the waters, I will be with you... I, I am he
who blots out your transgressions for my own sake..." (Is.43:5,2,25).
He who died for me, to deliver me from his own wrath, has redeemed me and made me his own. He has promised to be with me through whatver waters He sends me through. Then "let this cup pass from me -- yet not my will, but Yours be done." May his grace give me such a sweet submission to the one who loves me and has promised to walk with me!
who blots out your transgressions for my own sake..." (Is.43:5,2,25).
He who died for me, to deliver me from his own wrath, has redeemed me and made me his own. He has promised to be with me through whatver waters He sends me through. Then "let this cup pass from me -- yet not my will, but Yours be done." May his grace give me such a sweet submission to the one who loves me and has promised to walk with me!
Thursday, August 2, 2012
Self-control (something I need!)
Self-control
1 Corinthians 9:24-27
Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it. Every athlete exercises self-control in all things. They do it to receive a perishable wreath, but we an imperishable. So I do not run aimlessly; I do not box as one beating the air. But I discipline my body and keep it under control, lest after preaching to others I myself should be disqualified.
Proverbs 25:28
A man without self-control is like a city broken into and left without walls.
(he has a vulnerable place which the enemy can easily exploit to conquer)
Galatians 5:19-25
Now the works of the flesh are evident: sexual immorality, impurity, sensuality, idolatry, sorcery, enmity, strife, jealousy, fits of anger, rivalries, dissensions, divisions, envy, drunkenness, orgies, and things like these. I warn you, as I warned you before, that those who do such things will not inherit the kingdom of God.
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law. And those who belong to Christ Jesus have crucified the flesh with its passions and desires. If we live by the Spirit, let us also keep in step with the Spirit.
(note how many works of the flesh are related to lack of self-control, and how we need the Spirit to have our selves controlled)
Galatians 5:13-14
For you were called to freedom, brothers. Only do not use your freedom as an opportunity for the flesh, but through love serve one another. For the whole law is fulfilled in one word: “You shall love your neighbor as yourself.”
1 Timothy 2:15
Yet she will be saved through childbearing—if they continue in faith and love and holiness, with self-control.
(self-control is necessary in order to be saved to the end)
2 Timothy 1:7
for God gave us a spirit not of fear but of power and love and self-control.
(God gives us the power to be self-controlled)
2 Timothy 3:1-5
But understand this, that in the last days there will come times of difficulty. For people will be lovers of self, lovers of money, ... without self-control, ... lovers of pleasure rather than lovers of God, having the appearance of godliness, but denying its power. Avoid such people.
2 Peter 1:3-11
His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence, by which he has granted to us his precious and very great promises, so that through them you may become partakers of the divine nature, having escaped from the corruption that is in the world because of sinful desire.
For this very reason, make every effort to supplement your faith with virtue, and virtue with knowledge, and knowledge with self-control, and self-control with steadfastness, and steadfastness with godliness, and godliness with brotherly affection, and brotherly affection with love. For if these qualities are yours and are increasing, they keep you from being ineffective or unfruitful in the knowledge of our Lord Jesus Christ. For whoever lacks these qualities is so nearsighted that he is blind, having forgotten that he was cleansed from his former sins. Therefore, brothers, be all the more diligent to confirm your calling and election, for if you practice these qualities you will never fall. For in this way there will be richly provided for you an entrance into the eternal kingdom of our Lord and Savior Jesus Christ.
(self-control is something we are to strive to have, a quality that keeps you from being unfruitful and ineffective in your salvation, a quality that keeps you from falling and helps you make it safely to the end)
1 Timothy 3:2-4
Therefore an overseer must be above reproach, the husband of one wife, sober-minded, self-controlled, respectable, hospitable, able to teach, not a drunkard, not violent but gentle, not quarrelsome, not a lover of money. He must manage his own household well, with all dignity keeping his children submissive...
(self-control is to be evident in many of the qualities of an elder, even in the "with all dignity keeping his children submissive..." - not, making them submit by anger)
1 Timothy 3:11
Their wives likewise must be dignified, not slanderers, but sober-minded, faithful in all things.
(sober-minded is translated as "temperate" in the NKJV)
Titus 2:1-8
But as for you, teach what accords with sound doctrine. Older men are to be sober-minded, dignified, self-controlled, sound in faith, in love, and in steadfastness. Older women likewise are to be reverent in behavior, not slanderers or slaves to much wine. They are to teach what is good, and so train the young women to love their husbands and children, to be self- controlled, pure, working at home, kind, and submissive to their own husbands, that the word of God may not be reviled. Likewise, urge the younger men to be self-controlled. Show yourself in all respects to be a model of good works, and in your teaching show integrity, dignity, and sound speech that cannot be condemned, so that an opponent may be put to shame, having nothing evil to say about us.
(self-control accords with sound doctrine and is to be exhorted of all ages of people; we must all have the tendency toward lack of self-control, allowing ourselves to be slaves to our passions, rather than mking our bodies our slaves (as athletes do) in order to run well and win the prize. Those who are self-controlled will help prevent opponents from having anything evil to say about them.)
Titus 3:1-2
Remind them to be submissive to rulers and authorities, to be obedient, to be ready for every good work, to speak evil of no one, to avoid quarreling, to be gentle, and to show perfect courtesy toward all people.
Titus 2:11-14
For the grace of God has appeared, bringing salvation for all people, training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works.
1 Peter 4:7
The end of all things is at hand; therefore be self-controlled and sober-minded for the sake of your prayers.
(NKJV: But the end of all things is at hand; therefore be serious and watchful in your prayers.)
1 Peter 1:13-19
Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ. As obedient children, do not be conformed to the passions of your former ignorance, but as he who called you is holy, you also be holy in all your conduct, since it is written, “You shall be holy, for I am holy.” And if you call on him as Father who judges impartially according to each one's deeds, conduct yourselves with fear throughout the time of your exile, knowing that you were ransomed from the futile ways inherited from your forefathers, not with perishable things such as silver or gold, but with the precious blood of Christ, like that of a lamb without blemish or spot.
2 Timothy 4:5
As for you, always be sober-minded, endure suffering, do the work of an evangelist, fulfill your ministry.
1 Peter 5:8-9
Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.
(sober-mindedness, or self-control, is a protection against the devil's devouring... Like the man without self-control who is a city without walls)
-----------------------------------------------------
Self-control is:
necessary to our final salvation
something we must strive for
a fruit of the Spirit
Like an athlete, focus on your goal: that prize at the end of the race, the reason for which you "pummel your body and make it your slave", ruling your flesh and its passions in all things, so as to obtain the prize.
1 Corinthians 9:24-27
Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it. Every athlete exercises self-control in all things. They do it to receive a perishable wreath, but we an imperishable. So I do not run aimlessly; I do not box as one beating the air. But I discipline my body and keep it under control, lest after preaching to others I myself should be disqualified.
Proverbs 25:28
A man without self-control is like a city broken into and left without walls.
(he has a vulnerable place which the enemy can easily exploit to conquer)
Galatians 5:19-25
Now the works of the flesh are evident: sexual immorality, impurity, sensuality, idolatry, sorcery, enmity, strife, jealousy, fits of anger, rivalries, dissensions, divisions, envy, drunkenness, orgies, and things like these. I warn you, as I warned you before, that those who do such things will not inherit the kingdom of God.
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law. And those who belong to Christ Jesus have crucified the flesh with its passions and desires. If we live by the Spirit, let us also keep in step with the Spirit.
(note how many works of the flesh are related to lack of self-control, and how we need the Spirit to have our selves controlled)
Galatians 5:13-14
For you were called to freedom, brothers. Only do not use your freedom as an opportunity for the flesh, but through love serve one another. For the whole law is fulfilled in one word: “You shall love your neighbor as yourself.”
1 Timothy 2:15
Yet she will be saved through childbearing—if they continue in faith and love and holiness, with self-control.
(self-control is necessary in order to be saved to the end)
2 Timothy 1:7
for God gave us a spirit not of fear but of power and love and self-control.
(God gives us the power to be self-controlled)
2 Timothy 3:1-5
But understand this, that in the last days there will come times of difficulty. For people will be lovers of self, lovers of money, ... without self-control, ... lovers of pleasure rather than lovers of God, having the appearance of godliness, but denying its power. Avoid such people.
2 Peter 1:3-11
His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence, by which he has granted to us his precious and very great promises, so that through them you may become partakers of the divine nature, having escaped from the corruption that is in the world because of sinful desire.
For this very reason, make every effort to supplement your faith with virtue, and virtue with knowledge, and knowledge with self-control, and self-control with steadfastness, and steadfastness with godliness, and godliness with brotherly affection, and brotherly affection with love. For if these qualities are yours and are increasing, they keep you from being ineffective or unfruitful in the knowledge of our Lord Jesus Christ. For whoever lacks these qualities is so nearsighted that he is blind, having forgotten that he was cleansed from his former sins. Therefore, brothers, be all the more diligent to confirm your calling and election, for if you practice these qualities you will never fall. For in this way there will be richly provided for you an entrance into the eternal kingdom of our Lord and Savior Jesus Christ.
(self-control is something we are to strive to have, a quality that keeps you from being unfruitful and ineffective in your salvation, a quality that keeps you from falling and helps you make it safely to the end)
1 Timothy 3:2-4
Therefore an overseer must be above reproach, the husband of one wife, sober-minded, self-controlled, respectable, hospitable, able to teach, not a drunkard, not violent but gentle, not quarrelsome, not a lover of money. He must manage his own household well, with all dignity keeping his children submissive...
(self-control is to be evident in many of the qualities of an elder, even in the "with all dignity keeping his children submissive..." - not, making them submit by anger)
1 Timothy 3:11
Their wives likewise must be dignified, not slanderers, but sober-minded, faithful in all things.
(sober-minded is translated as "temperate" in the NKJV)
Titus 2:1-8
But as for you, teach what accords with sound doctrine. Older men are to be sober-minded, dignified, self-controlled, sound in faith, in love, and in steadfastness. Older women likewise are to be reverent in behavior, not slanderers or slaves to much wine. They are to teach what is good, and so train the young women to love their husbands and children, to be self- controlled, pure, working at home, kind, and submissive to their own husbands, that the word of God may not be reviled. Likewise, urge the younger men to be self-controlled. Show yourself in all respects to be a model of good works, and in your teaching show integrity, dignity, and sound speech that cannot be condemned, so that an opponent may be put to shame, having nothing evil to say about us.
(self-control accords with sound doctrine and is to be exhorted of all ages of people; we must all have the tendency toward lack of self-control, allowing ourselves to be slaves to our passions, rather than mking our bodies our slaves (as athletes do) in order to run well and win the prize. Those who are self-controlled will help prevent opponents from having anything evil to say about them.)
Titus 3:1-2
Remind them to be submissive to rulers and authorities, to be obedient, to be ready for every good work, to speak evil of no one, to avoid quarreling, to be gentle, and to show perfect courtesy toward all people.
Titus 2:11-14
For the grace of God has appeared, bringing salvation for all people, training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works.
1 Peter 4:7
The end of all things is at hand; therefore be self-controlled and sober-minded for the sake of your prayers.
(NKJV: But the end of all things is at hand; therefore be serious and watchful in your prayers.)
1 Peter 1:13-19
Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ. As obedient children, do not be conformed to the passions of your former ignorance, but as he who called you is holy, you also be holy in all your conduct, since it is written, “You shall be holy, for I am holy.” And if you call on him as Father who judges impartially according to each one's deeds, conduct yourselves with fear throughout the time of your exile, knowing that you were ransomed from the futile ways inherited from your forefathers, not with perishable things such as silver or gold, but with the precious blood of Christ, like that of a lamb without blemish or spot.
2 Timothy 4:5
As for you, always be sober-minded, endure suffering, do the work of an evangelist, fulfill your ministry.
1 Peter 5:8-9
Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.
(sober-mindedness, or self-control, is a protection against the devil's devouring... Like the man without self-control who is a city without walls)
-----------------------------------------------------
Self-control is:
necessary to our final salvation
something we must strive for
a fruit of the Spirit
Like an athlete, focus on your goal: that prize at the end of the race, the reason for which you "pummel your body and make it your slave", ruling your flesh and its passions in all things, so as to obtain the prize.
Saturday, July 21, 2012
normal kids
Sometimes it's hard to see everyone else's kids. They scream to me "normalcy" and "health" with every smile, every toy played with, every look in the eyes. It's hard to remember that there are other kids out there who have issues too. Who have turned one and are nowhere near sitting up, let alone walking. Who are expected to never be normal or look normal. Who will fight for every bit of development and growth they gain, when all the others seem to come by it so naturally. It's easy to forget that God has blessed us with 3 "normal" kids (with their own issues), and that our number 4 is a blessing too in his own way. That God uses trials on purpose to do us good. That trials from His hand are given in love, the way that we put our kids through hard things because we want good for them to result.
Friday, July 13, 2012
Glut1 Deficiency Syndrome conference
Thanks to my dear husband's willingness to handle everything at home without me for a few days (and my friend Alice VanNostrand's willingness to have the kids over during the day while David worked for 2 days), I got to go with Peter to the annual Glut1 conference (this year, in Indianapolis). The 2 top researchers in the US and one from Germany were there to speak, along with some other people.
It was 1 1/2 days of being with experts and parents and Glut1 kids. It was informative, enlightening, encouraging, and also discouraging.
The sessions were very informative. I love medical journal articles anyway and being explained to about how things work in the body and the brain. It is fascinating to me. We got to hear, from the experts, a good explanation of glucose transporter deficiency, its symptoms, and its broad range of difference from patient to patient. Basically, the brain is not getting the energy it needs from glucose (normal food), so it is starving. We feed the brain alternate fuel by giving the person a high-fat diet instead, resulting in the body producing ketones, which the brain can use for food.
It was enlightening to hear other parents mention that their kids as babies used to do some of the same things Peter does, like gag on his food. And to hear in the sessions that there is a small percent (perhaps 20-25%) of glut1 cases where, like Peter, the ketogenic diet does not solve their seizure problem, though it seems to help in other ways.
It was encouraging to have other parents who have been through this, to talk to.
It was also discouraging. Somehow when you are told that your child has a problem that has a wide range of outcomes, from very mild to very severe, you hope that your kid will be a mild one, that if you can do the right things, he will come out ok. There is an unknown, and therefore I tend to assume that the worst case won't be us, because it is still possible we could be a mild case. At the conference I saw a bunch of glut1 kids. With very few exceptions, every one of them had trouble walking straight and trouble talking, to some degree or other. Most of them have obvious mental impairment of some sort. The "normal-looking" end of the glut1 spectrum is like the genius end of the normal-people spectrum. They grow up to be disabled adults unless they are on the normal end. And usually the seizure type indicates the severity of the disorder. Peter is on the extremely bad seizure end, the uncommon end with "intractable infantile spasms." Very few glut1 kids have that. Now, he does not seem to have a lot of the other movement disorder issues that many of them have (yet), with weird arm movements and things, so I don't know what that means.
I am glad I went. I don't know if I would go again soon till Peter was a bit older and we were further in our journey on this road, though I would miss hearing the experts' talks. I would miss the time with other people who are in the same situation, though I don't feel as at home as I wish with them because Peter is an anomaly, a weird case of glut1 with some other unknown problem too that affected his brain. They have never seen glut1 with brain abnormalities, though there is the occasional glut1 with some other genetic problem.
It was nice to hear that they have never seen any glut1 child on the autism spectrum. But then, they have never seen one like Peter either, with optic nerve problems and brain issues.
But my God knows. That should be enough.
It was 1 1/2 days of being with experts and parents and Glut1 kids. It was informative, enlightening, encouraging, and also discouraging.
The sessions were very informative. I love medical journal articles anyway and being explained to about how things work in the body and the brain. It is fascinating to me. We got to hear, from the experts, a good explanation of glucose transporter deficiency, its symptoms, and its broad range of difference from patient to patient. Basically, the brain is not getting the energy it needs from glucose (normal food), so it is starving. We feed the brain alternate fuel by giving the person a high-fat diet instead, resulting in the body producing ketones, which the brain can use for food.
It was enlightening to hear other parents mention that their kids as babies used to do some of the same things Peter does, like gag on his food. And to hear in the sessions that there is a small percent (perhaps 20-25%) of glut1 cases where, like Peter, the ketogenic diet does not solve their seizure problem, though it seems to help in other ways.
It was encouraging to have other parents who have been through this, to talk to.
It was also discouraging. Somehow when you are told that your child has a problem that has a wide range of outcomes, from very mild to very severe, you hope that your kid will be a mild one, that if you can do the right things, he will come out ok. There is an unknown, and therefore I tend to assume that the worst case won't be us, because it is still possible we could be a mild case. At the conference I saw a bunch of glut1 kids. With very few exceptions, every one of them had trouble walking straight and trouble talking, to some degree or other. Most of them have obvious mental impairment of some sort. The "normal-looking" end of the glut1 spectrum is like the genius end of the normal-people spectrum. They grow up to be disabled adults unless they are on the normal end. And usually the seizure type indicates the severity of the disorder. Peter is on the extremely bad seizure end, the uncommon end with "intractable infantile spasms." Very few glut1 kids have that. Now, he does not seem to have a lot of the other movement disorder issues that many of them have (yet), with weird arm movements and things, so I don't know what that means.
I am glad I went. I don't know if I would go again soon till Peter was a bit older and we were further in our journey on this road, though I would miss hearing the experts' talks. I would miss the time with other people who are in the same situation, though I don't feel as at home as I wish with them because Peter is an anomaly, a weird case of glut1 with some other unknown problem too that affected his brain. They have never seen glut1 with brain abnormalities, though there is the occasional glut1 with some other genetic problem.
It was nice to hear that they have never seen any glut1 child on the autism spectrum. But then, they have never seen one like Peter either, with optic nerve problems and brain issues.
But my God knows. That should be enough.
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