Our little William (Iron Will) joined us a year ago. Sure - he has Down Syndrome, lives in a world that prefers he’d never been born, and won’t have anyone rioting or quelling free speech on his behalf, but his love is authentic and his worth beyond measure.
THIS.
A tiny hand in mine. An upturned face watching me. An innate confidence that I will guard as I guide. And guide as I lead.
May I remain forever worthy of THIS.
#FatherhoodFirst
#IronWill
#DownSyndrome
Yesterday, the XO took Iron Will to
@ChickfilA
after his medical appointments.
He wanted to sit on the bench, no booster, all by himself - just like one of the big guys.
And with the exception of a slight “juice meets shirt” incident (we’re still working on drinking from a
Iron Will MED SITREP (10 DEC, 1446hrs Local):
“This is the day the Lord has made; let us rejoice in it and be glad.”
- Psalm 118:24
THIS is my new fav pic of Iron Will!
Last night, they moved him off the high flow oxygen to a lower flow/pressure.
Today he’s down to 2
Iron Will MED SITREP (9 DEC, 2220hrs Local):
Just got home from hanging out with my little buddy.
He was thrilled to see us. Walking into that hospital room and seeing Iron Will work to sit up as he said, “Dad” was simultaneously heartbreaking and the greatest feeling ever.
What an awesome thing it is to whisper in my son’s ear, while he rests, that so many, many people around the world care for him and are praying for his healing.
Unbelievably powerful and inspirational.
Thank you all.
#IronWill
#DownSyndrome
#TeamIronWill
@elonmusk
Maybe help advocate for the most vulnerable in our society, including all the incredible and capable people with Down Syndrome, by RT’ing this video of my son, Iron Will, skateboarding for the first time?!!!
#IronWill
#DownSyndrome
Iron Will SITREP (7 NOV, 1006hrs Local):
The wee little man is now on 60% oxygen. They’re trying to wean him down from 100%. They tried 50% but he couldn’t do it. They also dropped the tank pressure from 15 liters to 10 liters, but it was too soon and he started retracting
What an awesome thing it is to whisper in my son’s ear, while he rests, that so many, many people around the world care for him and are praying for his healing.
Unbelievably powerful and inspirational.
Thank you all.
#IronWill
#DownSyndrome
#TeamIronWill
Iron Will MED SITREP (13 DEC, 1530hrs Local):
Whelp, Iron Will just received a visit from members of the ONLY hockey team he acknowledges - the St. Louis Blues!
And they came bearing gifts - a signed puck, bag and yo-yo!
A huge thanks to
@StLouisBlues
players Colton Parayko
Family,
Y’all are witness to history!!!
You’ve seen Iron Will kickin’ up dirt in his little walker.
Well, here are his FIRST steps WITHOUT the seat attached!
The wee little man is that much closer to dismounted ops!
Relentless. Forward. Progress.
#IronWill
#DownSyndrome
Iron Will MED SITREP (14 DEC, 2024hrs Local):
We are conceivably on the eve of victory…
Because Iron Will now only seems to need oxygen at night (probably related more to his central sleep apnea than the RSV/viral pneumonia), today he was prescribed take-home oxygen. Once we
Iron Will MED SITREP (13 DEC, 2100hrs Local):
Today was a good day! For a myriad of reasons. Iron Will is so close to being released. He’s off oxygen during the day AND they finally let him leave his room and engage in mobility ops again!
He was absolutely thrilled and
Iron Will MED SITREP (8 DEC, 2150hrs Local):
Today was extremely rough on the wee little man. He’s exhausted and miserable. They tried lowering his oxygen several times to no real avail. He’s not eating or drinking. According to the doc, he’s hitting the apex of the RSV - the
Iron Will MED SITREP (8 DEC, 1108hrs Local):
The wee little man got some good sleep last night which is critical.
Today’s plan is a slow wean, first from the albuterol. We tried yesterday unsuccessfully, but today is another opportunity for success! If the albuterol wean
Ok, my friends - Iron Will is out!
Doc said the surgery went smoothly. Now it’s a matter of waiting a couple months to determine how effective it will be in getting both eyes back into proper position. There’s some neurological reconnecting to the muscle pathways that
Team Iron Will,
If you’ll humor me for a moment, I want to tell y’all a quick but amazing story AND ask for your prayers.
Iron Will goes in for eye surgery on Monday.
We became concerned recently when we began to suspect one of his eyes was not always tracking properly.
Iron Will MED SITREP (11 DEC, 1846hrs Local):
One step forward, two steps…
They did another X-ray on Iron Will today because things are a little off. This X-ray showed he is still battling viral pneumonia exacerbated by the reactive airway disease that he’s always had.
So a
Iron Will MED SITREP (10 DEC, 1446hrs Local):
“This is the day the Lord has made; let us rejoice in it and be glad.”
- Psalm 118:24
THIS is my new fav pic of Iron Will!
Last night, they moved him off the high flow oxygen to a lower flow/pressure.
Today he’s down to 2
Not great, my friend.
The RSV apparently led to viral pneumonia. Iron Will’s had a couple albuterol treatments and is on oxygen. They’re going to admit him to the PICU to keep an eye on him until his oxygen saturation levels are good.
Iron Will MED SITREP (9 DEC, 2220hrs Local):
Just got home from hanging out with my little buddy.
He was thrilled to see us. Walking into that hospital room and seeing Iron Will work to sit up as he said, “Dad” was simultaneously heartbreaking and the greatest feeling ever.
Iron Will MED SITREP (9 DEC, 1250hrs Local):
Whelp, the roller coaster ride continues…
They just lowered Iron Will’s oxygen pressure and level to 6 liters at 40% so that’s good news - especially if he can sustain it!
And he had some scrambled eggs this morning, and they
I didn’t make a funny noise.
And everybody knows my jokes aren’t solid enough to elicit THAT kind of smile.
In truth, I simply said, “Hi.”
As we were hiking. With his little fingers clamped around mine in a way that let Iron Will know he could bravely meander on his own if he
Ok - the wee little man is out. He’s groggy and miserable, but everything seems to have gone well.
Thank you for all your prayers! Moving into the healing stage!
#IronWill
#DownSyndrome
Still waiting. The wee little man’s sole focus in life is food and drink. Poor dude - can’t blame him!
So we’re traversing the ward to distract him. Everyone is waving and calling his name. Oh, and his driving is erratic as heck…
#IronWill
#DownSyndrome
Iron Will MED SITREP (9 DEC, 1250hrs Local):
Whelp, the roller coaster ride continues…
They just lowered Iron Will’s oxygen pressure and level to 6 liters at 40% so that’s good news - especially if he can sustain it!
And he had some scrambled eggs this morning, and they
Iron Will MED SITREP (8 DEC, 2150hrs Local):
Today was extremely rough on the wee little man. He’s exhausted and miserable. They tried lowering his oxygen several times to no real avail. He’s not eating or drinking. According to the doc, he’s hitting the apex of the RSV - the
Iron Will MED SITREP (14 DEC, 2024hrs Local):
We are conceivably on the eve of victory…
Because Iron Will now only seems to need oxygen at night (probably related more to his central sleep apnea than the RSV/viral pneumonia), today he was prescribed take-home oxygen. Once we
Iron Will MED SITREP (12 DEC, 2259hrs Local):
It was a long day with some minor successes. And if I discuss my frustration with the lack of a coordinated treatment plan/way forward, this post will have a notably different tone.
So instead, I’ll share this video of the wee
Iron Will MED SITREP (11 DEC, 1846hrs Local):
One step forward, two steps…
They did another X-ray on Iron Will today because things are a little off. This X-ray showed he is still battling viral pneumonia exacerbated by the reactive airway disease that he’s always had.
So a
Iron Will MED SITREP (8 DEC, 1108hrs Local):
The wee little man got some good sleep last night which is critical.
Today’s plan is a slow wean, first from the albuterol. We tried yesterday unsuccessfully, but today is another opportunity for success! If the albuterol wean
Iron Will chillin’ in the hospital with his favorite non-cartoon show.
If you listen closely, you’ll hear the cutest doggone pronunciation of “Dude Perfect” ever! (I also clipped it for ya…)
Hey
@DudePerfect
- thought you’d appreciate this!
#IronWill
#DownSyndrome
Iron Will MED SITREP (14 DEC, 2024hrs Local):
We are conceivably on the eve of victory…
Because Iron Will now only seems to need oxygen at night (probably related more to his central sleep apnea than the RSV/viral pneumonia), today he was prescribed take-home oxygen. Once we
My friends,
Pardon my near-complete absence from Twitter (X) as of late, but things are hectic at the domicile AND Uncle Sam demands his pound of flesh for my missed time at work.
That being said, so many of you awesome peeps have inquired as to how Iron Will is doing now that
Each afternoon, a teacher escorts Iron Will to the car where the XO is waiting for him. Yesterday he was running just a bit late, and the teacher explained why by way of this picture.
In the hallway, on the way out, Iron Will saw this woman. He walked up to her and put those
Team Iron Will,
The wee little man had a rough night and morning. Breathing issues are always a concern with him (smaller airways) so we’re at the ER.
I’d so very much appreciate your prayers for him.
Thank you!
#TeamIronWill
#IronWill
#DownSyndrome
Perspective?
Sitting all night in an old recliner to keep the wee little man inclined for easier breathing while he sleeps is exactly what I signed up for…
#IronWill
#DownSyndrome
This is for you, my friends - the highly coveted fist bump from Iron Will!
You earned it!
We can’t convey enough how blessed and appreciative we are to have such a big team behind the wee little man, cheering him on, supporting our efforts to make a difference through
Ok, I’ve been working on the “YES!”/arm pump combo with Iron Will for months.
And THIS just happened…
Relentless.
Forward.
Progress.
#IronWill
#DownSyndrome
Iron Will MED SITREP (10 DEC, 1446hrs Local):
“This is the day the Lord has made; let us rejoice in it and be glad.”
- Psalm 118:24
THIS is my new fav pic of Iron Will!
Last night, they moved him off the high flow oxygen to a lower flow/pressure.
Today he’s down to 2
Iron Will MED SITREP (9 DEC, 1250hrs Local):
Whelp, the roller coaster ride continues…
They just lowered Iron Will’s oxygen pressure and level to 6 liters at 40% so that’s good news - especially if he can sustain it!
And he had some scrambled eggs this morning, and they
My cousin’s beautiful little son passed away this week.
He was an amazing one-year old person who happened to have Down Syndrome, but he wasn’t defined by it.
Instead he was defined by infinite love - manifest in his joyful, persevering, bigger-than-life spirit and in the
I can’t say “Thank You” enough to all of you for your love and support of Iron Will!
On behalf of the wee man himself and our entire family, I want to wish you a very Happy and Blessed New Year!
Here’s to finding joy and making a difference!
God bless.
#IronWill
#DownSyndrome
I now know, after watching the public, demonic attacks on those with Down Syndrome/disabilities as having “no quality of life” and being a reason we need abortion, that sides have been chosen.
And there’s no friggin’ middle ground.
I’m ok with that.
#IronWill
#DownSyndrome
In my ignorance, when he was born, I thought Iron Will needed me.
In His wisdom, before he was ever created, God knew it was I who needed Iron Will.
And it has been so ever since…
#IronWill
#DownSyndrome
Iron Will joyfully reuniting with his big sis!
After about 30 seconds of being apart…
It’s like this almost every time.
Which, when you think about it, is a pretty awesome way to live and love…
#IronWill
#DownSyndrome
Friends - As many of you know, Iron Will has some health issues/had a couple surgeries.
It kinda comes with the territory & he perseveres thru all of it!
We’re heading in to get the latest scope results.
Humbly request your prayers for the little dude!
#IronWill
#DownSyndrome
“So there I was…”
This is surely the most riveting, inspiring, authentically pure thing I’ve heard in a while. Probably because Iron Will is untainted by this broken world.
If you listen, you’ll hear what you want and need to hear…
Enjoy, my friends!
#IronWill
#DownSyndrome
Me (whispering): My beautiful son, it’s a big world out there. And it’s not an easy-go for those society deems “defective” or not “normal.” But I know this amazing group of people who love you unconditionally. And all of them have your six.
Iron Will:
#IronWill
#DownSyndrome
So many have asked how Iron Will is doing today. Thank you!
I watch him and I am full of gratitude to our God.
And I am humbled by my son and in awe of who he is. Of his resilient little spirit.
Because, in spite of the bouts of pain and discomfort, he is Indefatigable.
He is
Ok, my friends - Iron Will is out!
Doc said the surgery went smoothly. Now it’s a matter of waiting a couple months to determine how effective it will be in getting both eyes back into proper position. There’s some neurological reconnecting to the muscle pathways that
Key take-aways:
1. Iron Will’s pure joy is unconstrained!
2. Iron Will loves him a cheering section…
3. Iron Will’s cheering section loves the heck out of him!
4. The smallest, seemingly most innocuous moments are what make life so darn good!
Enjoy!
#IronWill
#DownSyndrome
Whelp, Iron Will decided to up the excitement level. Started wheezing and retracting, so we’re in the ER.
Respectfully request y’all continue your prayers!
On the bright side and to the delight of the medical staff, he was able to ID all the body parts of the dinosaur wall
The eye of the tiger…
Iron Will is feeling better and getting stronger every day. What a resilient little dude!
And to assist with his Tier 1 Operator training regimen, our dear friend
@Chelsea87883298
and her beautiful little daughter, Molly, sent Iron Will this punching bag!
THIS, ladies and gentlemen, is a wee little man who has gone hard and given his all today.
And is now taking a tactical pause wherever the darn heck he wants.
Relax, son. Daddy has the watch.
#IronWill
#DownSyndrome
#TeamIronWill
I rarely get to pick Iron Will up from school.
So today was awesome!
Mostly because each small, determined stride from the wee little man brought him CLOSER to me, and pushed the hate and psychosis of this world, and all the “adults” Hellbent on destroying it, FARTHER away.
If
Iron Will chillin’ in the hospital with his favorite non-cartoon show.
If you listen closely, you’ll hear the cutest doggone pronunciation of “Dude Perfect” ever! (I also clipped it for ya…)
Hey
@DudePerfect
- thought you’d appreciate this!
#IronWill
#DownSyndrome
What motivates Iron Will to sit up in bed and take notice?
A card packed full of love from the big sister (Tango Tango) he completely adores!!!
#IronWill
#DownSyndrome
#TangoTango
@continuedry
This might be one of the hardest-hitting, unintentionally eloquent tweets I’ve ever read. I felt all of it. I am so sorry, my friend. Pausing everything to pray for him and for you. May his soul Rest In Peace.
Sometimes, it’s just as simple as looking out for the little guy. Defending the most vulnerable. Caring for those who can’t care for themselves.
Iron Will gets it…
#IronWill
#DownSyndrome
Just a question:
Who agrees that Iron Will, and every person with Down Syndrome, is not “defective,” but is PERFECT in every sense of the word?
No matter what
@WHO
says!
#IronWill
#DownSyndrome
Well, folks, you get to witness Iron Will executing a first right along with us!
The wee little man exhibiting boldness AND amazing coordination by jumping with both feet!
Relentless. Forward. Progress.
#IronWill
#DownSyndrome
#TeamIronWill
Not great, my friend.
The RSV apparently led to viral pneumonia. Iron Will’s had a couple albuterol treatments and is on oxygen. They’re going to admit him to the PICU to keep an eye on him until his oxygen saturation levels are good.
A very Happy and Blessed Birthday to my little hero!
Three years of persevering, making a difference and living life to the fullest.
What a blessing!
What an example!
What a journey!
Can’t wait to see what else God has in store for you, Iron Will!
#IronWill
#DownSyndrome
Our little William (Iron Will) joined us a year ago. Sure - he has Down Syndrome, lives in a world that prefers he’d never been born, and won’t have anyone rioting or quelling free speech on his behalf, but his love is authentic and his worth beyond measure.
Since y’all are invested in Iron Will and so appreciative of his joyful and unrelenting approach to life, I thought I would share the wee little man’s Report Card with you.
“Will is a ray of sunshine on a cloudy day. We all adore him.”
So basically an A+…
#IronWill
Ok - the wee little man is out. He’s groggy and miserable, but everything seems to have gone well.
Thank you for all your prayers! Moving into the healing stage!
#IronWill
#DownSyndrome
😲😲
So, we say it to him constantly and then yesterday, outta nowhere, the wee little man says this…
And left everyone clamoring to get some of that awesome goodness!!!
Relentless.
Forward.
Progress.
#IronWill
#DownSyndrome
I absolutely cannot get enough of Iron Will blessing his food!
He may not know all the words yet, but that doesn’t stop him from being intentional in his prayer.
Or from recognizing, even in the midst of trial and tribulation, that consumption is best preceded by appreciation
Last night, Iron Will and I worked on saying, “baseball.”
I threw an extra vowel in to break the word up. Which resulted in my favorite pronunciation ever!
Pardon the chaos at the end - I just had to hug the wee little man right then!
#IronWill
#DownSyndrome
#TeamIronWill
#RFP
On Christmas Eve, the tradition is that the youngest member of our posterity place Baby Jesus in the crib.
Many of you may recall that last year (see the RT) was a near-catastrophe as Iron Will executed a Shovel Pass with the Christ Child… 😳
This year (with a little help from
Leading up to Christmas, our posterity earn pieces of straw for acts of kindness. The straw is to line the crib.
On Christmas Eve, the youngest member of the family lays the infant Jesus in his crib.
Here’s Iron Will practicing. And terrifying the XO…
#IronWill
#DownSyndrome
“Hey, Andrew, what’s it like shopping at Costco with Iron Will?”
Uhhhh, it’s like this.
Exactly like this.
All the time…
Relentless. Freaking. Forward. Progress!
#IronWill
#DownSyndrome
#TeamIronWill
#RFP
Ladies and Gentlemen,
I present to you yet another advocate of utilitarianism, eugenics, elitism, cowardice, bullying and ultimately, hatred and dehumanization.
Don’t misunderstand the drivel below.
@RichardHanania
truly believes he’s better and smarter than you. Than everyone.
The rate of Down Syndrome births in Europe is about half of what it would be due to abortion.
Many of the parents go on to have a healthy child instead, or maybe two.
So you get just as many lives but more health.
There are actually people who think this is a bad thing.
THIS little guy!
High fever. Body aches. Cough. Probably a headache. Restless sleep.
And in spite of it all, he smiles and wants to toast me.
Absolute legend…
#IronWill
#DownSyndrome
My littlest hero is also my biggest hero…
Even as he pushes through the pain and discomfort, Iron Will’s magical smile and signature “funny face” are enough to make my Father’s Day complete!
#IronWill
#DownSyndrome
#FathersDay2023
Iron Will’s message for World Down Syndrome Day?
Relentless.
Forward.
Progress.
Every member of our family had a part to play in this video, and Sierra 2 (Son
#2
) produced the entire thing. So it’s with heartfelt and humble appreciation of how blessed we are to have Iron Will
After a prolonged R&R, Iron Will started back to school this past Thursday!
The XO got to walk him in and she said it was a triumphant return of epic proportions. People cheering in the hallway, giving the wee little man fist bumps and high-fives, yelling “Will’s back!”
Because
Team Iron Will,
If you’ll humor me for a moment, I want to tell y’all a quick but amazing story AND ask for your prayers.
Iron Will goes in for eye surgery on Monday.
We became concerned recently when we began to suspect one of his eyes was not always tracking properly.
Obviously, mastery of the M123 Plastic Tomahawk is a critical TASK in Iron Will’s training regimen…
Relentless.
Forward (and Accurate).
Progress.
#IronWill
#DownSyndrome
#TeamIronWill
What a birthday celebration for Iron Will!
From devouring pizza to boisterous singing to enjoying the birthday cake his mother and sister so lovingly made, the wee little man was stoked and full of joy!
As were all of us!
#IronWill
#DownSyndrome
#TeamIronWill
I figure a heartfelt reunion between two long-separated (at LEAST one minute!) best buds is a pretty solid way to wrap up the evening.
After all, who doesn’t want to be pursued and greeted with such vigorous, reckless love?!!!
Have a great night, my friends. And may God bless
Me: Son, you okay? You seem pensive.
Iron Will: Well, sir, I can’t stop thinking about the succulence of that steak.
Me: That’s understandable, son. There is, however, another delectable culinary treasure that awaits you. It’s called bacon…
Iron Will:
#IronWill
#DownSyndrome