Abiding in Jesus

"The true Christian "abides in God". He lives in constant daily dependence on Him, relying on Him for life and fruitfulness and everything. Seeking Him daily for everything. Depending on Him daily for everything. Having Him at the center of all our feelings and thoughts and actions. He is everything to us, and we can't live without Him!" (Andy Dunkerton)

Worship

God's goal is worship.
So Jesus healed the sick, raised the dead.
It produced worship.
But for those He saves, now in this age,
worship is produced more by trial than by healing.
It is not that He cannot heal,
nor that often He will not heal.
But in our hearts so enraptured by His good gifts,
it is the difficulties that bring us back to Him.
It is sickness and death and affliction
that He uses to produce worship in us,
to make us see and treasure Him,
to give us real Joy. In Him.

Man of Sorrows

    ...he had no form or majesty that we should look at him,
        and no beauty that we should desire him.
    He was despised and rejected by men;
        a man of sorrows, and acquainted with grief;
    and as one from whom men hide their faces
        he was despised, and we esteemed him not.
                                                                        (Isaiah 53:2-3)


Man of Sorrows.
Jesus did not come in hopes of living the American Dream, only to find that life was hard.
He came knowing that his life would be one of sorrows.
A life of difficulty, of grief, of being despised and rejected by men.

Jesus also did not come in order to help us live the American Dream.
He came to save sinners and to make them like Himself.
He was not a man continually depressed, morose, grumpy at life.
He was a man who lived for his Father, gladly, every moment.
His joy did not come from his circumstances.
It came from loving his Father and knowing his Father's love.
It came from trusting that his Father was with him, would care for him, and would do all things well.

This is what He calls us to do.
To live for Him - for our Savior - gladly, every moment.
With our joy coming from Him, from loving Him and knowing His love, despite our circumstances.
Joy that comes from trusting that Jesus is with us, caring for us, and doing all things well.

Perhaps the reason I have resented my disabled child
(you're not supposed to say that, but it's the truth of a sinful heart)
Is that he makes it impossible for me to live an easy, convenient life.

Someone has said that the American culture tells us "you should not have to suffer" -
That you deserve a life where you can remove all suffering, all pain.
A life where you can make it to that dream,
That place where you have a nice home, a nice family, a nice job, a nice retirement, and nice health.

But that place is found only in Heaven.
And it is not reached by striving to remove all our pains here,
By searching for that perfect job and perfect life that will be all pleasure.

To live for Jesus!
Oh, that I would have that mind all the time.
It gives joy in every situation, knowing that Jesus desires me to be there.
And joy in every child, knowing that each one comes from His hand.
That each one really is a gift.  A good gift.

Bittersweet

A bittersweet day, watching videos of Jeff at the age Peter is now.  I can't do that very often.

His Purpose

Give thanks to the God of heaven,
for his steadfast love endures forever.  (Psalms 136:26)

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works; my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret, 
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me, 
when as yet there was none of them. (Psalms 139:13-16)

For though the Lord is high, he regards the lowly...
Though I walk in the midst of trouble, you preserve my life...
The Lord will fulfill his purpose for me;
your steadfast love, O Lord, endures forever.
Do not forsake the work of your hands.  (Psalms 138:6-8)

Abide in Me

From a recent sermon by Andy Dunkerton at our church:
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The true Christian "abides in God". He lives in constant daily dependence on Him, relying on Him for life and fruitfulness and everything. Seeking Him daily for everything. Depending on Him daily for everything. Having Him at the center of all our feelings and thoughts and actions. He is everything to us, and we can't live without Him!

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This is what I want - for Jesus to be everything to me!

portioned out

Father, I know that all my life is portioned out for me
The changes that are sure to come, I do not fear to see
I ask Thee for a present mind, intent on pleasing Thee.

I ask Thee for the daily strength, to none that ask denied
A mind to blend with outward life, while keeping at thy side
Content to fill a little space, if Thou be glorified.

In service which Thy will appoints, there are no bonds for me
My secret heart is taught the truth that makes Thy children free
A life of self-renouncing love is one of liberty.

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And Mary said, “Behold, I am the servant of the Lord; let it be to me according to your word.” (Luke 1:38)

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The service which Thy will appoints is plain to see
Make my heart sweetly submit to Thee

This is not a burden with which I am afflicted
But rather a child with which I have been gifted

For now, my storm You have stilled
Be it unto me as You will

I can walk on the water - with eyes fixed on You
Oh! Keep me from sinking till my time is through

Live to God

To live to God.

This is not an option, something good Christians "ought to do".
This is the purpose for which we were bought by Jesus. To be slaves of righteousness, slaves of God.

A slave does not choose what he does for the day. He simply obeys. His life is not his own.
Yes, we are to obey as children, out of love; but we should not see our lives as our own.

We can't be saved, and then live as we please as long as it doesn't violate our consciences.
Rather we are saved in order to belong to Jesus, to act like Him, to be a replica of Him in this world.
To be the hands and feet and mouth of Jesus, doing and speaking whatever He would do if He were in my body, in my circumstances.

Our error is in not realizing that we are always someone's slaves - either sin, or Jesus. We are never our own.

Jesus is not a slave emancipator who would buy wretched slaves in order to simply free them from their misery and let them go live free where they wish. Rather he is a good master, who buys slaves owned by a cruel master - so that they may instead serve HIM.

2 Corinthians 5:15, "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."

Galatians 2:19-20, "For through the law I died to the law, so that I might live to God. I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me."

Romans 6:22,"But now that you have been set free from sin and have become slaves of God, the fruit you get leads to sanctification and its end, eternal life."

The fight

It is almost physically painful to see kids born around the time Peter was, and to be with their families. To see their kids, far surpassing mine, brings again the pain, the fight to be content... the need to remind myself yet again that my Father loves me, that everything from His hand is GOOD, that my child is a gift... I don't ever seem to get used to it.  I have to fight it out again every time...

Heaven comes.  Remind me of that.

Psalm 104

1 Bless the Lord, O my soul!
O Lord my God, you are very great!
 You are clothed with splendor and majesty,
2 covering yourself with light as with a garment,
 stretching out the heavens like a tent.
3 He lays the beams of his chambers on the waters;
he makes the clouds his chariot;
he rides on the wings of the wind;
4 he makes his messengers winds,
his ministers a flaming fire.
5 He set the earth on its foundations,
so that it should never be moved.
6 You covered it with the deep as with a garment;
the waters stood above the mountains.
7 At your rebuke they fled;
at the sound of your thunder they took to flight.
8 The mountains rose, the valleys sank down
to the place that you appointed for them.
9 You set a boundary that they may not pass,
so that they might not again cover the earth.
10 You make springs gush forth in the valleys;
they flow between the hills;
11 they give drink to every beast of the field;
the wild donkeys quench their thirst.
12 Beside them the birds of the heavens dwell;
they sing among the branches.
13 From your lofty abode you water the mountains;
the earth is satisfied with the fruit of your work.
14 You cause the grass to grow for the livestock
and plants for man to cultivate,
that he may bring forth food from the earth
15 and wine to gladden the heart of man,
 oil to make his face shine
and bread to strengthen man's heart.
16 The trees of the Lord are watered abundantly,
 the cedars of Lebanon that he planted.
17 In them the birds build their nests;
the stork has her home in the fir trees.
18 The high mountains are for the wild goats;
the rocks are a refuge for the rock badgers.
19 He made the moon to mark the seasons;
the sun knows its time for setting.
20 You make darkness, and it is night,
when all the beasts of the forest creep about.
21 The young lions roar for their prey,
seeking their food from God.
22 When the sun rises, they steal away
and lie down in their dens.
23 Man goes out to his work
and to his labor until the evening.
24 O Lord, how manifold are your works!
In wisdom have you made them all;
the earth is full of your creatures.
25 Here is the sea, great and wide,
 which teems with creatures innumerable,
living things both small and great.
26 There go the ships,
and Leviathan, which you formed to play in it.
27 These all look to you,
to give them their food in due season.
28 When you give it to them, they gather it up;
when you open your hand, they are filled with good things.
29 When you hide your face, they are dismayed;
when you take away their breath, they die
and return to their dust.
30 When you send forth your Spirit, they are created,
and you renew the face of the ground.
31 May the glory of the Lord endure forever;
may the Lord rejoice in his works,
32 who looks on the earth and it trembles,
who touches the mountains and they smoke!
33 I will sing to the Lord as long as I live;
I will sing praise to my God while I have being.
34 May my meditation be pleasing to him,
for I rejoice in the Lord.
35 Let sinners be consumed from the earth,
and let the wicked be no more!
 Bless the Lord, O my soul!
 Praise the Lord!

even this

It's really discouraging to find a therapy sheet from over a year ago (for Peter) and to see that we are working on the exact same things today.  A lot has happened since then, drugs, regression, progression, the diet.  And yes, I am thankful for the progress I can see from 6 months ago.  I must again choose this, rather than resent it. Accept even this from a loving Father's hand...

To the praise of His glory!

Not our own! - Ephesians 1.

We have made Christianity so man-centered - "God wants you to be saved, come choose Jesus, then you will have a happy life and go to heaven."

But Ephesians 1 is full of the opposite. God is the one choosing us before time, and not for man-focused reasons (so I can avoid hell), but for His own purposes; not "so my life will be better right now" but rather "that we should be holy and blameless before him."

We are predestined for adoption - "to the praise of His glorious grace."

We receive an inheritance - "to the praise of His glory."

He works all things, not according to our wishes, but "according to the counsel of his will" - and with the purpose of making us be "to the praise of His glory."

There is nothing man-centered about biblical religion. It is all about God. Initiated by God, carried out by God, completed to the end by God, and for God's purposes.

We are not our own! And even unbelievers are not their own, for they were created by God for His own purposes as well.

But we. It is not that we can choose salvation, and then go live as we wish, as long as we do it in a biblical way;  - that we can decide something and then go pray make sure we have God's stamp of approval on our plans.

It is rather - that we are bought, chosen, redeemed, by One much greater than ourselves, who has saved us in order that we might be bringing Him praise among men; - in order that we should fulfill His purposes, do His bidding, be His ambassadors on earth, proclaim His praises in a dark world. We were made to point to Him. Everything we do, every choice we make, should not be a we-decide-then-get-His-stamp-of-approval, but rather a what-is-Your-bidding-my-Lord.

We are purchased bondservants. Our life is not our own. Our will is not our own. We do not have the jurisdiction over our own time and money. It is all His. The question is not, "what am I allowed to do under Christian liberty?" but rather, "what does Jesus wish me to do?" and "what would most cause others to praise Jesus because of me?"

There is no self-pity; I am His. There is no anxiety; I need but do His bidding, and He will take care of the rest; He owns me. I need not fear my future, for it will be in His service. I can pray, and know that His answers will be good for me; He is wiser than I. He is the Ruler; I am the subject. He is the Lord, I am His glad servant. He chooses, He rules, He works all things as He wishes - to the praise of His glory.

Psalm 100

Ps.100

The LORD is God.

He made us, and we are his.

The LORD is good!

Therefore we can serve him with gladness!

finding the rope

This is a long grief.

I had thought of it (dealing with Peter and his problems) almost like being thrown into a lake, floundering a bit, but eventually finding that boat to get into, the rope to hold onto until I could get in the boat and then be ok.

It seems more like keeping my head above water in a choppy sea... the boat is there, and the rope is there, and I can grab onto it. But all I can do is hold on to the rope, let go, find it again, and hold on... there is no getting into the boat, just struggling to keep holding on.

It is a grief. A dying of expectations and hopes and dreams.  Perhaps made more difficult because no one could predict the outcome.  There was only a range of outcomes, giving hope for the better end of things. And gradually having all the hopes of the better end be washed away, one by one.  Every day slides the mark on the spectrum further to the worse end of outcomes. Every day there is a little more dying, a little more realization that Peter is not on the good end of his spectrums.  Though I do have to remember there are plenty of kids worse off than he is, with no prospect of improvement, only a slow decline back to death.

Eventually I find the rope again. God reminds me of the Cross, of Jesus, of being ransomed and forgiven and bought with blood. He reminds me that I would gladly do anything for my Savior, and that his bidding is "care for this child".

Do this for Me

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.

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.

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 4:4-5
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.

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.

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!

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)

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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.

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.

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.

Update on Peter

A Peter update:

Peter has improved some developmentally while on the ketogenic diet.  His poor vision probably hampers his development as well.  Now he will at least lie under a baby "gym" and whack at the toys with both arms and legs to make the music go.  (Before he didn't seem to even realize he had arms to do anything with.)  So although he does not yet deliberately touch things with his hands or hold things, at least he will move his arms to make things happen.  His vision is improving slightly - I guess it's a matter right now of his brain learning to use whatever vision he has.  One of his therapists who comes regularly is giving me ideas of things to do to encourage him to use his vision.

His latest drug (started in May) looked really good for the first few days and then not so helpful after that. Because of the potential for serious side effects, and because it was not stopping Peter's spasms as hoped, we are tapering off that drug and (at the same time) starting a different one.  Please pray that something will be found to stop the spasms so that his brain can function more properly and help his development. 

We don't know for sure if the diet could be helpful in stopping Peter's spasms, because it has not ever given quite the blood levels that it should to be helpful.  Some things are being modified to see if that can be improved.  Please pray that this would work so that we can see if it would help after all in regard to seizures / spasms.  Pray too for a good relationship with our dietitian (who controls the diet), who knows a huge amount about the diet and manages it for lots of kids, but is resistant to changing things from the way she wants them (or to the parent having much control over the diet).  We tend to "butt heads" frequently over things, and I haven't yet figured out how to advocate for my child while at the same time being a witness for Jesus in my interactions with her. I haven't figured out how to be a witness in almost any of my neurology appointments, since they usually end up with me in tears over something.  Either frustration over drugs and treatments not working, or frustration with the dietitian's unwillingness to change anything easily. Or something.  I feel like I ought to be above that, serene and accepting meekly whatever circumstance Jesus puts me and Peter in, always remembering that He is in control and loves me and is wise and powerful.  And then I look at Peter and am sad over what he is not and may never be.  And I need to learn from Joni to rejoice in whatever there is good in my situation.  Which there is a lot of.

An Enigma

Peter is an enigma. That has to be ok. I have to be content to know that nobody knows what is wrong with him, not really, nor why the drugs and treatments are not working.  I have to be content if none of the drugs ever work. Content to have the almost certainty of a significantly handicapped child, mentally if not otherwise.  Content to rest in Jesus for His wisdom and care and power, rather than putting yet another vain hope in this next drug to maybe make everything better. Content to have Peter's vision never improve.

I'm not there yet.  But the sooner I am, the less agitated my heart will be.  It won't take away the tears of disappointment, frustration, and grief. But perhaps it would give a song through the pain.

weary days

It's easy to be discouraged lately. To not fix my eyes on Christ but rather on my surroundings.

In December Peter was put on ACTH (like a steroid) which lasted 10 weeks before he was totally off it - in an attempt to stop his infantile spasms. This works for lots of kids, but wasn't much permanent help for him. Instead we got 2 months of a sad and miserable Peter who was hungry all the time and did not sleep well. His spasms (which are like seizures) improved while on the ACTH, but now that he's totally off it, they are almost as they were before we started treatment.

He's been on 2 anti-epileptic drugs, which did nothing for the spasms, although one of them seemed to stop his other (longer) seizures from occurring. Since then we have received results from a gene testing panel that was sent off in December, and the one gene that showed a problem was one that causes a person to have glucose transporter deficiency (glut-1 for short). This means that the protein that transports glucose into the brain is not functioning properly, so the brain does not get the energy it needs.

The one and only real treatment for this is to put the person on the ketogenic diet, or some form of it, so that the body burns fat instead of carbs (glucose) for energy. The resulting ketones in the blood can then be used by the brain for energy.

We do thank God very much for granting us this diagnosis so early in Peter's life, as many kids are not diagnosed till years later, after the time when the brain most needs its energy for growth.

So Peter has started this ketogenic diet. It's mostly fat (oil and a special formula). However, he wasn't drinking the volume of fluids recommended when having this diet, so he has ended up with a stomach feeding tube (g-tube). Theoretically he can still take things by mouth, but I don't think he likes the taste of what he's eating, so lately he won't take anything by mouth. Which is frustrating to me, since he needs the oral stimulation of eating and nursing to help his future speech development. And, I haven't seen much if any benefit from the diet yet, which is also discouraging. For some kids it takes longer to work, apparently. It just makes me wonder if this is really the thing to do. But we really don't have any other option.

Also his vision is pretty bad. Probably they would call it CVI (cortical visual impairment), which basically means the brain is not interpreting what his eyes see correctly. Possibly he also has optic nerve problems, which would make the issue worse. We know he can see light and bold patterns, but he doesn't respond well visually to the world in general.

At least he is generally happy now (a wonderful change from his first 8-9 months), and opens his eyes a little more than he used to. And he does smile some. I'm thankful for those things.

It's easy to forget that in my trials, the Lord is yet "compassionate and merciful."
"Indeed we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord—that the Lord is very compassionate and merciful." (James 5:11)

O to remember that. And that heaven is not far away.