I was going to continue my "Journey through the Bible" readings --- that "The Bible in 90 Days" program I began two years ago... I'm on Day 71.
But I got distracted.
With the new movie out "War Room" and a need to revitalize my own personal prayer focus - I thought instead I would get out all my prayer devotionals and each day read that days prayer focus. Stacked them on my desk front and center with a vow to each morning before FB, go through the stack of that day's reading.
I began today.
And out of the stack of five books, two of today's readings were about failure.
Totally applicable today.
My son was to return to school today after 36 days home due to a broken clavicle from yet another seizure.
He couldn't.
Another seizure.
All those plans made today where I could totally enjoy freedom from my caregiving captivity - failed.
It seems of late with all the seizure setbacks - my prayers have been a failure too. I don't know how one can pray wrong unless you just don't pray, but obviously I feel that I am praying wrong. Not long enough, hard enough, often enough, sincere enough, etc.
I think satan likes it when I think that. Which is why I guess God nudged me to read today's readings, today.
One quote in one book's reading for today was:
"Ever tried. Ever failed. No matter. Try again. Fail again. Fail better."
That goes along with my motto NDCQ - stolen from the Navy SEAL who coined the term. NDCQ is a warrior mentality. An attitude that you can only be beaten in two ways: If you give up, or if you die. NDCQ is Not Dead Can't Quit. I embrace that motto so deeply because it doesn't guarantee you will win every battle. It just encourages you to continue the fight. And in that -- you will never lose. Dream! Dare! Do! NDCQ! Is another way they use that motto. I love it. It encourages me to keep dreaming of a seizure-free life for Brandon. It motivates me to continue to dare to defy defeat. It pushes me to keep doing all I can.
The other book for today's reading was titled, "Returning to your Failure." The opening scripture was from Luke 5:5.
But Simon answered and said to Him, "Master, we have toiled all night and caught nothing; nevertheless at Your word I will let down the net."
The reading began with, "No one knows how to help you in your times of failure as Jesus does! He will give you victory in the midst of your failure."
Sometimes I feel like Peter in the illustration used. I have prayed so often for wisdom how to control Brandon's seizures, how to figure out what is triggering them so I could address that issue to hopefully heal him. I have cast my prayers over and over into the darkness of night, but time and time again, the net has come back empty. No fish, just more seizures.
I'm not sure I'll ever understand the "why's" in any of that. I suppose though, it's not my job too.
My job is to simply cast that net.
To dream, to dare, to do.
To Never Quit.
To know that whenever I cast my net in obedience to God's word, it will never come back empty of what it is I truly need.
And you know what?
It hasn't.
Ever.
I do need to work on failing better, (and perhaps with a few less curse words). But even more than that, I need to remember what it truly means to win.
NDCQ
Thursday, September 10, 2015
Friday, August 28, 2015
The Betrayal
Day 70
Matthew 18 - 28
Matthew 21:13 "It is written," he said to them, "My house will be called a house of prayer,' but you are making it a 'den of robbers.'"
Matthew 25:35-40 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 26:14 Then one of the Twelve --- the one called Judas Iscariot --- went to the chief priests and asked, "What are you willing to give me if I hand him over to you?" So they counted out for him thirty silver coins.
Matthew 26:24 But woe to that man who betrays the Son of Man! It would be better for him if he had not been born.Matthew 26:39 "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will."
Matthew 26:42 "My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done."
Matthew 27:46 "My God, my God, why have you forsaken me?"__________
The above passages are titled "The betrayal" in my Bible.
We can all apply the title of those passages to our lives in some way....
The betrayal...
Of a spouse, a friend, a coworker, an industry.
For me, Pharma is that industry. The corporate greed of the vaccine industry has been my Judas Iscariot. The Pharmaceutical industry was supposed to be someone I trusted -- yet their vaccines betrayed my son for thirty silver coins. Or whatever their current annual profit off vaccines is.
It is so hard to fathom that type of blatant betrayal. I sit here and think about how Jesus sat and broke bread with the very man who would betray him, lead him to his death. How so many of us at one time or another have been betrayed by someone close to us. How Pharma, the government, the media -- look us in the eye and say without flinching, "vaccines are safe" and "vaccines save lives" -- knowing full well both have been proven false time and time again.
How do people do that? Is what they would gain so much more appealing than what they will lose in the process?
Sadly, as Judas found out....... no.
If not for having been betrayed myself in the harm done to my son, I could never even relate to such betrayal. But sadly, I can. Jesus was betrayed for thirty silver coins. My son's health was betrayed for the price of each vaccine. Truly, "woe to that vaccine industry who betrayed an innocent generation of children!"
There have been countless times in the years since living with our betrayal, where watching my son suffer on his cross I have looked to the heavens and and begged God to take that cup of autism from him! My situation so very different from Jesus' as he was nailed to the cross - yet still in our way, the pain so profound. I can so relate to that plea from son to Father, as this mother has pleaded with God so very often to take that cup of suffering away! And I struggle with the "God's will" part of what Jesus says..... With all that is in me, I do not believe vaccine injury was God's will - because now that I know the truth, I don't think vaccination ever had any part in HIS plan for our bodies. But I do believe in a Sovereign God who knows all things. He knows what happened, and I think the plan in all of this is that the truth be exposed. No more damage done. God can, but I feel it is up to us, to do. We did this, not God. We must fix it. We must go back to trusting in God's perfect design. In God's healing. To live the faith in God that we so often preach but do not practice.
I don't think God has forsaken us, we have forsaken the truth. And woe to those who have told such lies. I pray that I live to see the day of Congressional Hearings where their fraud is exposed and they wish not one of their vaccines had been created! Let alone proclaimed as safe, or life-saving.
And much how this day's reading ends, I think our great commission as warriors in this great vaccine debate is to be disciples of truth. All authority in heaven and on earth has been given to us as mothers, as parents of the children we gave birth to, love, - to do what we know is best for them. Not what Pharma wants us to believe or some politician wants to mandate for us - for thirty silver coins of profit, or thirty silver coins in a campaign contribution.
__________________
The Great Commission
Matthew 28:18 Then Jesus came to them and said, "All authority in heaven and on earth has been given to me. Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age."
Matthew 18 - 28
Matthew 21:13 "It is written," he said to them, "My house will be called a house of prayer,' but you are making it a 'den of robbers.'"
Matthew 25:35-40 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 26:14 Then one of the Twelve --- the one called Judas Iscariot --- went to the chief priests and asked, "What are you willing to give me if I hand him over to you?" So they counted out for him thirty silver coins.
Matthew 26:24 But woe to that man who betrays the Son of Man! It would be better for him if he had not been born.Matthew 26:39 "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will."
Matthew 26:42 "My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done."
Matthew 27:46 "My God, my God, why have you forsaken me?"__________
The above passages are titled "The betrayal" in my Bible.
We can all apply the title of those passages to our lives in some way....
The betrayal...
Of a spouse, a friend, a coworker, an industry.
For me, Pharma is that industry. The corporate greed of the vaccine industry has been my Judas Iscariot. The Pharmaceutical industry was supposed to be someone I trusted -- yet their vaccines betrayed my son for thirty silver coins. Or whatever their current annual profit off vaccines is.
It is so hard to fathom that type of blatant betrayal. I sit here and think about how Jesus sat and broke bread with the very man who would betray him, lead him to his death. How so many of us at one time or another have been betrayed by someone close to us. How Pharma, the government, the media -- look us in the eye and say without flinching, "vaccines are safe" and "vaccines save lives" -- knowing full well both have been proven false time and time again.
How do people do that? Is what they would gain so much more appealing than what they will lose in the process?
Sadly, as Judas found out....... no.
If not for having been betrayed myself in the harm done to my son, I could never even relate to such betrayal. But sadly, I can. Jesus was betrayed for thirty silver coins. My son's health was betrayed for the price of each vaccine. Truly, "woe to that vaccine industry who betrayed an innocent generation of children!"
There have been countless times in the years since living with our betrayal, where watching my son suffer on his cross I have looked to the heavens and and begged God to take that cup of autism from him! My situation so very different from Jesus' as he was nailed to the cross - yet still in our way, the pain so profound. I can so relate to that plea from son to Father, as this mother has pleaded with God so very often to take that cup of suffering away! And I struggle with the "God's will" part of what Jesus says..... With all that is in me, I do not believe vaccine injury was God's will - because now that I know the truth, I don't think vaccination ever had any part in HIS plan for our bodies. But I do believe in a Sovereign God who knows all things. He knows what happened, and I think the plan in all of this is that the truth be exposed. No more damage done. God can, but I feel it is up to us, to do. We did this, not God. We must fix it. We must go back to trusting in God's perfect design. In God's healing. To live the faith in God that we so often preach but do not practice.
I don't think God has forsaken us, we have forsaken the truth. And woe to those who have told such lies. I pray that I live to see the day of Congressional Hearings where their fraud is exposed and they wish not one of their vaccines had been created! Let alone proclaimed as safe, or life-saving.
And much how this day's reading ends, I think our great commission as warriors in this great vaccine debate is to be disciples of truth. All authority in heaven and on earth has been given to us as mothers, as parents of the children we gave birth to, love, - to do what we know is best for them. Not what Pharma wants us to believe or some politician wants to mandate for us - for thirty silver coins of profit, or thirty silver coins in a campaign contribution.
__________________
The Great Commission
Matthew 28:18 Then Jesus came to them and said, "All authority in heaven and on earth has been given to me. Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age."
Wednesday, July 22, 2015
The City on the Hill
Day 69
Matthew 1 - 18
Matthew 1:23
The virgin will be with child and will give birth to a son, and they will call him Immanuel --- which means , "God with us."
I guess I should title this "Thoughts & Truths" --- as this days readings could be split up in many parts. Some simply favorite scriptures to hide in your heart, other verses leading to thoughts of personal application. Not really one story from this reading, but many.
In Matthew 4:1, one such story in temptation. "Then Jesus was led by the Spirit into the desert to be tempted by the devil." I can so relate to that as it seems I'm tempted quite often, and even more often feel I'm left in the desert! I guess that's where the next part of that verse comes in, with Matthew 4:4 saying, "It is written: 'Man does not live on bread alone, but on every word that comes from the mouth of God.'" It is those times of temptation, or feeling lost and abandoned in the desert - that I must thirst most for God. Be fed by His Word. Every word of temptation or defeat, followed by a word of truth and victory. We may not be able to totally stop those temptations or defeats, but we can better react to them with knowing and speaking God's truths, of which there are so many good ones in this reading.
Matthew 4:19 "Come, follow me," Jesus said, "and I will make you fishers of men."
The Beatitudes....
Matthew 5:3-12
Matthew 1 - 18
Matthew 1:23
The virgin will be with child and will give birth to a son, and they will call him Immanuel --- which means , "God with us."
I guess I should title this "Thoughts & Truths" --- as this days readings could be split up in many parts. Some simply favorite scriptures to hide in your heart, other verses leading to thoughts of personal application. Not really one story from this reading, but many.
In Matthew 4:1, one such story in temptation. "Then Jesus was led by the Spirit into the desert to be tempted by the devil." I can so relate to that as it seems I'm tempted quite often, and even more often feel I'm left in the desert! I guess that's where the next part of that verse comes in, with Matthew 4:4 saying, "It is written: 'Man does not live on bread alone, but on every word that comes from the mouth of God.'" It is those times of temptation, or feeling lost and abandoned in the desert - that I must thirst most for God. Be fed by His Word. Every word of temptation or defeat, followed by a word of truth and victory. We may not be able to totally stop those temptations or defeats, but we can better react to them with knowing and speaking God's truths, of which there are so many good ones in this reading.
Matthew 4:19 "Come, follow me," Jesus said, "and I will make you fishers of men."
The Beatitudes....
Matthew 5:3-12
Blessed are the poor in spirit, for theirs is the kingdom of heaven.
Blessed are those who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness, for they will be filled.
Blessed are the merciful, for they will be shown mercy.
Blessed are the pure in heart, for they will see God.
Blessed are the peacemakers, for they will be called sons of God.
Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven.
Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me.
Blessed are those who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness, for they will be filled.
Blessed are the merciful, for they will be shown mercy.
Blessed are the pure in heart, for they will see God.
Blessed are the peacemakers, for they will be called sons of God.
Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven.
Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me.
Matthew 6:9
Our Father in heaven, hallowed be your name, your kingdom come, your will be done on earth as it is in heaven. Give us today our daily bread. Forgive us our debts, as we also have forgiven our debtors. And lead us not into temptation, but deliver us from the evil one.
Matthew 6:19
Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.
Matthew 6:33
But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Matthew 7:7
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
Matthew 7:25
The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.
Matthew 8:23
Without warning, a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, "Lord, save us! We're going t drown!" He replied, "You of little faith, why are you so afraid?"
Matthew 10:39
Whoever finds his life will lose it, and whoever loses his life for my sake will find it.
Matthew 11:28
"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 12:36
But I tell you that man will have to give account on the day of judgment for every careless word they have spoken. For by your words you will be acquitted, and by you words you will be condemned.
Matthew 16:24
Then Jesus said to his disciples, "If anyone would come after me, he must deny himself and take up his cross and follow me."
Matthew 17:20
I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
I'll focus on a few scriptures that really touched me in this days journey with regard to my "Life with Autism" ---
We are that city on the hill of vaccine corruption.
We will shine the light of truth.
We will not be hidden.
Oh how that gives me such great HOPEISM in the face of such great persecution!
Our Father in heaven, hallowed be your name, your kingdom come, your will be done on earth as it is in heaven. Give us today our daily bread. Forgive us our debts, as we also have forgiven our debtors. And lead us not into temptation, but deliver us from the evil one.
Matthew 6:19
Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.
Matthew 6:33
But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Matthew 7:7
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
Matthew 7:25
The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.
Matthew 8:23
Without warning, a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, "Lord, save us! We're going t drown!" He replied, "You of little faith, why are you so afraid?"
Matthew 10:39
Whoever finds his life will lose it, and whoever loses his life for my sake will find it.
Matthew 11:28
"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 12:36
But I tell you that man will have to give account on the day of judgment for every careless word they have spoken. For by your words you will be acquitted, and by you words you will be condemned.
Matthew 16:24
Then Jesus said to his disciples, "If anyone would come after me, he must deny himself and take up his cross and follow me."
Matthew 17:20
I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
I'll focus on a few scriptures that really touched me in this days journey with regard to my "Life with Autism" ---
I love Matthew 4:16 which says, "....the people living in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned." Sometimes in my "Life with Autism" I do feel like we are living in the land of the shadow of death. In the typical life that vaccine injury has stolen, in the health seizures have eroded... Some cycles of seizures leave Brandon looking like he'll have permanent residence in that land. A time or two with seizures where he stopped breathing completely, our son was briefly in that shadow. Other times he should have been, but by the Grace of God was spared. But then light. It always dawns. Always. The darkness of the lies the vaccine industry has spoken and that our government has allowed to prevail can never be totally or permanently hidden from the light of truth. Matthew 5:14 says, "You are the light of the world. A city on a hill cannot be hidden." Our truth is that light. Our "city" of vaccine injury to an entire generation of children will no longer be hidden. To me that verse and the "Blessed are those who are persecuted" both reflect what we are going through now with our parental choice and religious rights being taken away because of the total corruption of the vaccine industry and the absolute ineffectiveness of the CDC in their newfound state of total loss of respect and believability. Our truth in all that is a light in the darkness of corruption. And once again, truth, whether we're talking about God or vaccine corruption -- cannot be hidden.
I have "seen the light" of God's salvation and will never return to believing the lies of satan.
We who have "seen the light" of vaccine truth, will never return to the darkness of believing the lies of Pharma.
I have "seen the light" of God's salvation and will never return to believing the lies of satan.
We who have "seen the light" of vaccine truth, will never return to the darkness of believing the lies of Pharma.
We are that city on the hill of vaccine corruption.
We will shine the light of truth.
We will not be hidden.
Oh how that gives me such great HOPEISM in the face of such great persecution!
Thursday, April 9, 2015
...the HOPEISM of Sunday.
I think if anything describes my journey in "Life with Autism" it's that in a series of unfortunate Friday's, there came the rare, blessed Sunday's.
I have a prayer request, I know, shocking. But before that, I want to share a little something about a message I received yesterday, and one that echoes others I have received -- in someone asking how I get through this. All the years of challenges, obstacles, setbacks. How I cope..... I am a veteran on this journey. One whose child with vaccine injury, er autism, is one of the most severely affected medically. Behaviorally with respect to the fact that he cannot tolerate things being done to him.... Hair cuts, blood draws, ear checks, procedures where he must comply in any form or fashion. Brandon's sensory issues make those things nearly impossible. Some things he has learned to tolerate over time. Hair cuts and blood draws are relatively doable with little blood shed, on our part! But for him to understand to lay down after seizures, to sit still and allow for an x-ray, a scan, dental work, -- nope. Not even all the ABA in the world has helped one inch with those things. Our son is severely affected.
I am so happy for all those whose children have recovered to the point of understanding and even allowing those things. I am Praising God for all the parents who have fully recovered their child. I'm just not one of them. I am one who can simply Praise the God who gets us through. I am one who can say that HOPEISM gets me through all the defeats, all the obstacles. I am not one who can tell you that if you are good, and do good, that good will happen and all will be better for your and your child. I simply don't believe in that. I believe in God's plan, God's purpose. Not that if you do good, you will get good, or that if you are bad, bad will happen. Karma may apply in life, but not in Faith. I've been "good" so to speak, and yet still we have such suffering in our "Life with Autism" and in our son who remains severely affected by autism. I don't know why that is, I don't know that I ever will. But what I do know if that everything works for the Glory of God -- and we have experienced so very many things through these sufferings where we give th Glory in the victories, the endurance, the miracles here and there, -- to God.
One such thing, this is April 2015. Brandon for the past week has consistently weighed 146 pounds. Not since April 3, 2009 has he weighed 145 pounds. That was the highest his weight has been. He was 5'4" and weighed 145. Today, he is 5'9" and weighs 146. The lowest point since 2009 has been 126 pounds. It has taken us 6 years to get his weight back to where it was in 2009. Let alone where it needs to be today, like more around 165. Six years of setbacks. Of one precious pound gained only to have a seizure and loss of three additional pounds to make up. That's how it's been all these years in this seizure-cycle that we haven't been able to break. One precious pound gained, only to have seizures subtract three, four, or five pounds in the recovery process. Spending uncountable amounts of money and time in finding and preparing food that will pack maximum nutrition and calories. On the modified ketogenic diet, the tedium of balancing fats and proteins and carbs. All to have one pound gained then three or more lost with each seizure.
But finally, after six years, we are where we were, plus one.
Six long years to gain back 20 pounds.
It's mind boggling.
And we're still not even where we need to be.
That's another 20 pounds to go.
I've been trying to comprehend that these past few days. When that friend asked me the question, I tried again to think of what I could say in answer to "How do you do this for so long?" "Do we win?" I even went back and read my "Journey through the Bible" blog I write - where I've taken each days reading of the Bible and applied it to our "Life with Autism". I was encouraged by some of those thoughts I had written. The books of the Bible that were so filled with gloom and despair - there was always a scripture of Hope and the promise of Healing. In fact, some of the favorite, most profound scriptures I've clung to, were from the gloomiest, doomiest books of the Bible.
And like I thought then when writing my blogs, I can assuredly say now, "Yes, we do win." What God told them then, still applies now.
Be faithful.
Be obedient.
Cling to HOPEISM.
That isn't a promise that prayers will be answered when and how we pray for, just that they will be answered. Since August of 2010 Brandon's seizures have been relentless. We finally had a 35 day seizure-free streak. Five years of praying for such a break. Since 2009 we've been trying to get Brandon's weight back to where it was. We finally did that. Six years of praying for that. Brandon is 21. We've been living "Life with Autism" since he regressed from vaccine injury at 2 years old. Nineteen years of praying through that. We are far from recovered, but we have had so many reasons to give Glory to God in the endurance. In how he has sustained us. Sustained Brandon. And to have witnessed and been a part of such health revolution, such a community of warriors......
That is what sustains me.
What gets me through it.
That is how we win --
By NEVER QUITTING!
We win when we pray without ceasing, we win when we believe in a recovery we may never see in this world, we win when we hope when all hope seems lost, we win when we pursue healing, no matter how small the increments may be, we win when we advocate no matter how strong the opposition or how tired of fighting we are, and we win when we speak truth no matter how much our voice shakes.
We win when we pray without ceasing, we win when we believe in a recovery we may never see in this world, we win when we hope when all hope seems lost, we win when we pursue healing, no matter how small the increments may be, we win when we advocate no matter how strong the opposition or how tired of fighting we are, and we win when we speak truth no matter how much our voice shakes.
NDCQ!
Now for the prayer --
Be careful what you pray for, you may get it....
Team Guppy will undergo yet another challenge. As if the Traumatic Tap Lumbar Puncture from Hell with a Spinal Tap headache from hell wasn't enough; and lest I forget the 2nd degree burns that were very much caused by that..... wasn't enough of a challenge. I still have PTSD from that experience.
A medical professional believes that Brandon would benefit from IVIG. This person has advocated for it for our son - and we finally were approved to try it on our son. Insurance coverage and all.... I have to admit, I was kinda hoping doors would slam shut on that. I know that is horrible to admit, but when you've gone through the unrelenting challenges we have, and for so long, even the best of HOPEISM's aren't enough to make you not grow weary at the thought of enduring yet another challenge.
But we must. God indeed used this person to help bring us to this opportunity, and we must now suck it up and walk through it.
While I may not be convinced of the ability of Brandon to endure it, I am convinced of God's humor in us even thinking he could. This child that we can barely contain to have his ears checked, that we can't contain for dental exams -- is supposed to willingly sit still and allow 3 to 6 needles in his stomach for IgG to be subcutaneously infused over three hours. We feel for him subcutaneously is the best route for him, given that IVIG has a higher rate of adverse reaction. And we know from the lumbar puncture, if there is a chance of a bad reaction, he'll have them all.
We are to do the subQ IgG weekly.
I can't see that happening. I just......can't. I don't want to be a part of making it happen, but I must. We owe it to Brandon to try. For the first time, a nurse will be here to train us and oversee it in case he does have a reaction. After that, we can do this at night when he's sleeping or when he has a seizure and is knocked out.
But for this first one, we must attempt cold-turkey.
And so we will.
Pray for us.
We'll be enduring yet another Friday in "Life with Autism" while trying to cling to the promise of Sunday.
Now for the prayer --
Be careful what you pray for, you may get it....
Team Guppy will undergo yet another challenge. As if the Traumatic Tap Lumbar Puncture from Hell with a Spinal Tap headache from hell wasn't enough; and lest I forget the 2nd degree burns that were very much caused by that..... wasn't enough of a challenge. I still have PTSD from that experience.
A medical professional believes that Brandon would benefit from IVIG. This person has advocated for it for our son - and we finally were approved to try it on our son. Insurance coverage and all.... I have to admit, I was kinda hoping doors would slam shut on that. I know that is horrible to admit, but when you've gone through the unrelenting challenges we have, and for so long, even the best of HOPEISM's aren't enough to make you not grow weary at the thought of enduring yet another challenge.
But we must. God indeed used this person to help bring us to this opportunity, and we must now suck it up and walk through it.
While I may not be convinced of the ability of Brandon to endure it, I am convinced of God's humor in us even thinking he could. This child that we can barely contain to have his ears checked, that we can't contain for dental exams -- is supposed to willingly sit still and allow 3 to 6 needles in his stomach for IgG to be subcutaneously infused over three hours. We feel for him subcutaneously is the best route for him, given that IVIG has a higher rate of adverse reaction. And we know from the lumbar puncture, if there is a chance of a bad reaction, he'll have them all.
We are to do the subQ IgG weekly.
I can't see that happening. I just......can't. I don't want to be a part of making it happen, but I must. We owe it to Brandon to try. For the first time, a nurse will be here to train us and oversee it in case he does have a reaction. After that, we can do this at night when he's sleeping or when he has a seizure and is knocked out.
But for this first one, we must attempt cold-turkey.
And so we will.
Pray for us.
We'll be enduring yet another Friday in "Life with Autism" while trying to cling to the promise of Sunday.
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