Note: Michelle Guppy posted this yesterday, on FaceBook, and I asked if I could share it here. The meaning of love changes as we grow up - old. For so many of us who are full time caretakers of our adult children with autism, love means an intense workload and exhaustion. Maybe that's a dirty secret I'm not supposed to share. Keeping my mouth shut has never been my strong suit. Michelle has a strong partner in her husband. Thank goodness, because her handsome son is a strapping fully grown man with seizures and behaviors. Some of us are single parents. My daughters' Dad sees them one weekend a month, kind of like ROTC without the push ups. Or as I told Gianna, like her period. (There's the mouth!) No matter the home set up, we are ALL wiped out at the end of the day. And we do this work with love, respect and a quiet determination so that our kids, toddler or teen, shorty or forty, will always remember that they had a Mom who loved them forever, liked them for always. As long as WE are living, our babies they'll be.
What Valentine's Day has come to mean to me since "Life with Autism, Seizures, & a side of PANDAS"
I love how on each Valentine's Day until such time as Brandon is healed, I get to be reminded of what true, unconditional love is.
We went to court for Guardianship of Brandon on Valentine's Day of 2012...
On each Valentine's Day, I have his annual Guardianship update paperwork to fill out and submit. You have to submit that paperwork each year on the Anniversary of when Guardianship was Granted...
On Valentine's Day of 2012 Todd and I appeared in Harris County Court before a Judge to show the ultimate act of love for our son...
In swearing to care for and advocate for him as guardians.
To give our all to him in that way, meant that more often than not, there would be nothing left for us. Physically, Emotionally, Mentally, and most of all --- FINANCIALLY.
Guardianship - does not come with provision.
So many Valentine's Day gifts this week in white tents in parking lots full of the worlds view of "love" -- in things you can buy and give. Love isn't in those things at all. It is in what can't be bought and in what is given unconditionally. It is in doing something for someone who can never repay you. Love is a commitment to your son who cannot read, write, or talk, that you will advocate and protect his rights above all else. Love is being up all night, for 26 years and counting, with few exceptions. It is having traveled to so many doctors you lost count and doing anything you could to help. It is the determination in forging a path where there was none. Knowing that path would help others, though not necessarily you or your son. It is being bitten and bearing those scars. It is in the wretchedness of having to watch seizure upon seizure and not being able to stop them. It is in every cell in your mother's heart crying out in pain at the helplessness of it all. It is in constantly making the choices for him, not you, not your spouse, not your marriage. It is the financial, emotional, mental, & physical sacrifices you make for him each and every day. I say that last part again because it's worth repeating. The toll financially, emotionally, mentally, & physically is beyond imaginable. Borderline unsurvivable.
I know in my life as much as I don't want it to be - it is borderline idolatry as well. The trifecta of Autism, Seizures, & PANDAS is an entity that engulfs even God at times. When you try to put it in it's place, it's there seizing, needing, growling, biting, humming, moving non-stop to where it can't be ignored.
It won't be ignored.
But it has taught me so much.
Love is not found in a romantic, quiet dinner with your spouse. It is not seen in a beautiful bouquet of roses, nor can it be conveyed in the perfect card. It is found in the love that endures as one sleeps downstairs while the other sleeps upstairs. So at least the one who must earn the money can do so fully functioning. It is in making a tag team marriage work without the benefit of date night, marriage seminars, or a quick fix book. It is in sacrificing everything for someone else with nothing left over for each other.
It's found in those 30-second stolen moments of conversation with your spouse. It's found in the hilarity of how one project that a typical family can do in one day, takes us 3 weekends because of the constant interruptions of autism.
As much as I hate this journey, I love how it worked out that on Valentine's Day each year, we get to be reminded of what love really means.
Happy Valentine's Day Brandon, it is such an honor for us to be able to advocate, care for, and protect you for another year. I need to do a much better job of reminding myself that. It is the highest honor, the most honorable kind of hero - to choose to stay with you when every fiber of my flesh just wants to flee at times. I say that for me, and for all of you just like me.
And to the person(s) who have over the last few years cowardly & anonymously called in a merit-less complaints of abuse and had Adult Protective Services come investigate us for exploiting our son's vaccine injury -- you have solidified perhaps the greatest form of love of all that we have for our son.....
That it will never be silenced.
That no matter what or who tries to silence us from sharing our son's vaccine injury - they will never succeed.
Our greatest act of love for him is to make sure he speaks out about what happened to him ---in whatever way we can.
And that is through me.
So that no other parent or individual must go through what we have...
What Brandon has.
That is our greatest act of love...
To lay down our life, to risk everything, for our son.
And people like you will never know that kind of selfless love.
To those who feel Brandon is a "gift" and that it can't be that bad because of the good I have shared here ---- Yes. Brandon is a gift. What man has done to him is not. I wish I had parents warning me then, so I wouldn't have to live this now. Make no mistake, this vaccine injury/autism/PANDAS is not a blessing. It is an insufferable tragedy that I wish upon all wishes I didn't have to live.
That my son didn't have to live with.
~ ~ ~
Brandon, we pray for the day we can tear up those guardianship papers, but until then, you remind us what unconditional love truly is and we thank you for that and give you our word for yet another year, that we will NEVER QUIT.