On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
December 22, 2010
As a child it meant Santa, Rudolph, and gifts galore.
It was a winter wonderland perhaps not always of snow, but always of the magic of it all.
Christmas as a child was a carefree time with no worries.
When my husband and I became Santa & Mrs. Claus with the birth of our first son Matthew, Christmas was all those things and more, but perhaps with deeper sentiment.
In knowing we were making these memories for our son, to be his Christmas memories one day, to pass on to his son, and so on.
As it should be.
During Matt’s childhood, I could not imagine Christmas meaning any more than it did then.
We had the best of both Christmases.
Both real and make-believe.
The bribery of Santa’s ‘naughty’ or ‘nice’ list.
The truth that Christmas was about Baby Jesus’ Birthday, who was born for us to be put on His eternal-life list.
Cuddling on the couch with him each night, watching Charlie Brown, Rudolph, or Santa Claus Comes to Town.
Christmas Eve Candlelight service, singing about our Savior.
And then the look on his face Christmas morning in finding all the toys Santa left him under the tree…
I thought that was Christmas.
And his autism.
What would Christmas be then?
Can a Christmas, without Christmas things, still be Christmas?
Without the understanding of his own Birthday, let alone Jesus’?
What memories do I make for him, who might never have a son to pass them on to?
I now know the answer.
It would still be Christmas.
Christmas through Brandon’s eyes.
You see, once you strip everything from Christmas that is autism… the magic, the pretend, the imagination, those things that my son can’t comprehend.
The crowds, the Christmas goodies, & the parties that my son can’t have or handle.
And the perfect gifts, that I can’t buy, from a list that he can’t write…
If you take away all that – all you have for Christmas is a mom, a dad, and a precious child.
If not, look at any Nativity scene.
What do you see?
What don’t you see?
And when I look at it that way, I can see why many do not like this time of year.
And I’m even more dazzled by how much I love this time of year.
They see a perfect Christmas as one in a clean, full house, decorated exceptionally.
I see it as an essentially homeless couple forced to have a baby alone in a dirty barn.
They see the only point of Christmas in being if you have a job and can put gifts under the tree.
I see it as a poor Shepherd Boy who had no gift to bring except for himself.
They think you can’t have a Merry Christmas if you are burdened by challenges, disappointments, or poor health.
I see the joy of Three Wise Men who wouldn’t have missed that journey, that Holy Night, and all the hardship & challenges they had to endure to get there - for all the Frankincense, Myrrh, and Gold in the world.
And sometimes when the world tries to make it so complicated and hurried, I think it is good to just sit back and think as simply as the animals did in that barn long ago, - simply staring in awe at a baby asleep in their hay.
It’s because I now must look at Christmas that way, that it has become the most wonderful time of my year.
It’s the time of the year that I look back on the journey and how far I have come in following that Star, my God, who is up in the heavens guiding me.
It’s that time of year when I can look back at all the Herod’s in my son’s life who would want to harm him, but didn’t because I would go to the ends of the earth to protect him.
It’s that time of year when I take time for renewal, in preparation for the New Year and a new journey, as challenging as it too may be.
It’s that time of year when I can truly smile that in my own plain-ness, I am highly favored.
I have given birth to a most special child.
No, not one who would save the world from sin…
But rather one who has saved me from myself.
Yes, I can look at what the world has done to Christmas, and what it has told me Christmas can only be about – and I can see how I too would want it to just go away as quickly as possible.
But when I look at Christmas through my son’s eyes, and through Mary’s imperfect journey in getting to that first Christmas night so long ago, I can only see joy, peace, and a most perfect love.
I can only be joyful.
I can only wish for it not to end!
I think that’s God’s personal confirmation to me, that He knew what he was doing with autism in my life.
His personal illustration to me, that Christmas is not what the world has taken away in my son, but rather what God has given me through the gift that is His son, my son.
Christmas through Brandon's eyes, is my son’s gift to me.
His sacrifice, my gain.
Those lines sound familiar too…
And it humbles me to no end.
Just like I’m sure it did to Mary.
As she saw Christmas through Baby Jesus’ eyes...
On that first Holy Night, many Christmases ago.
Merry Christmas Brandon…..
I love you .
December 17, 2010
I know you didn't want to be late to work this morning, or have to haul your son out of the tub yet again from another seizure.
I know I didn't want to have to take the dog to the vet, nor have my plans changed or made more difficult to complete yet again by Brandon having to miss school...
That seems to be the key word of late!
You and I remind me of Joseph and Mary.
Their journey to the birth of Christ.
No, not that we are as holy or as chosen as they were.
But that really in God's plans and purposes for our lives, we are.
Their life together was not as they planned.
Many pitfalls, challenges, tests of faith.
I have to know that during all that - they were focused on the destination. On the overwhelming joy of what would come to be - overshadowing all that they would face simply to get there.
And so I simply thank you this Christmas.
For listening to that voice of God that tells you in prayer that all will be well if you remain steadfast and focused and do not jump ship no matter how hard it may shake.
For living that quiet, simple life of focusing on only what matters and helping us to shut out all that doesn't for self-preservation of our sanity.
For loving the Lord your God with all your heart, soul, and mind.
Those things being the key to our survival of "Life with Autism".
Our journey lately has been a hard one.
It's tested our patience and endurance.
But I can't help but smile in how it so reflects all that Christmas is meant to be about.
And I know that come Christmas Eve and Christmas Day - if we have never left our house to do anything "Christmas'y", if we have not a Christmas gift bought, not a Christmas card sent, not a Christmas program or party attended, - we will have celebrated the true gift of Christmas in the way it was meant to be celebrated.
And the ever present...
You'll want to focus on that last one when you get the $515.00 vet bill from this morning.
I love you Todd....
Thank you for all that you do....
December 3, 2010
(originally written in 2004)
December 2, 2010
There's a scene in one of the episodes where Charles & Caroline had just lost a baby boy. Caroline was in a strange town where they had taken their son to get better help, and it was there where he died. She stood staring out the window at the busy street down below and simply said, "Where is everyone in such a hurry to get to..."
Her son had just died and she could not imagine anything else in that moment.
Time for her, simply stood still.
Being no stranger to travesties with my own son who has epilepsy, I often find myself thinking of that line in that episode.
Something Life with Autism brings to me, is an appreciation of timelessness.
In Brandon's world, there is no time.
There's never not enough of it, never too much of it. He doesn't even know what time is, and is therefore, never stressed by it.
He never has too much to do where he would need more of it, and he's never been bored and wished he had less of it.
He simply lives each moment, as that moment.
Once that moment is gone, no regrets if he made a mistake or lived it wrong.
Never thinking about moments yet to come, nor the worries or stress of what those moments might, or might not, bring.
His world is a timeless world - and the kind of world I try to live in as much as possible.
Where all that matters is this moment right here, right now.
Where all that matters is if you are truly living in this one moment that you are guaranteed.
Each seizure my son has, reminds me of that.
Today he had one and fell backwards down our wood stairs, landing head first on the tile floor.
He survived that praise the Lord, but it once again reminded me how timeless time is. In the moments that followed that incident, it didn't matter what time it was, what appointment I was missing, what I could or couldn't now get done.
It didn't matter if that put Christmas behind - or at least my self-imposed thinking of what schedule should be kept in the warp-speed pace that Christmas has become.
Nothing mattered except each moment that I could sit with or lay beside my son, simply being thankful for each breath he took.
Christmas -- the stuff of it could have come and gone and I wouldn't have cared or really missed it.
Because Christmas -- the spirit of it, was being lived right there and right then in the simplicity of a moment.
Of each moment filled with thoughts and things that truly mattered.
Surprisingly not one of those thoughts or things included gifts still to get or parties to plan or attend.
Much like the simplicity of the moment on that Christmas long ago when all Mary and Joseph could do, was sit with the newborn Savior-King and keep him warm and safe.
Not complaining about or regretting the hardship of getting there, not worrying about the hardships that would face them in the days ahead.
Just simply savoring that timeless moment of Christ's birth...
That's the kind of timelessness that my son celebrates each day.
And the kind that I vow to this Christmas.
As I look out my window each day wondering where all the people are in such a hurry to go, I'll be thankful that because of my son, I'm not going to be one of them...
Christ gave to me unconditional love.
I never really understood what "unconditional love" meant, until my son Brandon brought "Life with Autism" into my life.
Here is a child who by the world's standards, can give me nothing. He cannot show his love for me by searching for or making me the perfect gift. He cannot tell me he loves me. Most days I wonder if he even knows me, let alone loves me!
But I know that he does.
And I know that I love him whether he can buy me something to show his love, make me something to show his love, write to me that he loves me, or tell me that he loves me.
I love him when I get a rare hug, a sweet smile, when he's pinched, punched, or puked on me.
I love him whether he knows me or loves me!
That is unconditional love.
To give everything for someone who can give you nothing.
That's God's love for us.
That He gave everything for us.
For us who can truly give Him nothing.
He loved me when I didn't yet know Him. He loved me when I did know Him but rejected him. He loved me when I finally accepted Him and then hurt him.
He. Simply. Loves. Me. Unconditionally.
No. Matter. What.
What a perfect gift to know and receive this Christmas --- Christ's unconditional love!
Thank you God for the unconditional love whose cheek Mary kissed when he was born on that Christmas Day long, long ago...
Thank you God for the unconditional love whose cheek I kiss each night...