THIS IS BIG.

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We’ve hit a milestone, dear reader.

Now I should warn you, that in my extended family we have a habit for good or ill of quoting from movies we’ve seen together at random times.  Sometimes these are carefully staged, such as the letter I still have somewhere from my sister (then 15) during my freshman year at college, wherein the entire letter is movie quotes modified for the situation.  We do this at the darndest times too, usually if a situation looks too sentimental, as a way of coping, or to “trivialize the momentous and complicate the obvious.”  It has gotten us into mischief sometimes, and I crave pardon because I’m going to subject you to a small example of this tonight.

Tomorrow, someone has a big birthday.

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And just going through the pictures is enough to make me want to cry. 🙂

Tomorrow, we’re the parents of a TEENAGER.

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No way, right?

“Now I see in your eyes, the same fear, that would take the heart of me! A day may come, when [we really regret that the teen years are here], but it is not this day.

“This day, we [celebrate!]”

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HAPPY BIRTHDAY, MR. MAN!

I’m not scared of the teen years.  We all survived our own, and so did our parents.  It’s going to have its ups and downs, and maybe more downs than ups, but what good would it do to fret about it?  It’s not going to stop the clock! 😉  So no, I’m not afraid.

((Cue Yoda: “You will be. You will be.” 😉 ))

Yes, I know, I’m incurably optimistic and naive.  I’m facing uncharted waters full of breakers and other things-not-so-good.  But you know what? We’ve been facing uncharted waters all the time since that evening of December 5, 2003, when a sort of normal pregnancy went suddenly very not-normal and things happened so fast we didn’t know what our lives would look like the next day.  We were getting the no good really awful terrible news. Life was not turning out how we thought. But he came. He began by beating all the odds, and he’s still at it. Life may not have followed our original plan, but a much better one.  Trooper needed us, and we needed him.  We are all the better for him.  And God has a way of getting folks through uncharted waters, so it’s all good.  It’s all grace.

Happy 13th Birthday, our Trooper. We love you so much, you crazy, funny, sarcastic teenager. You still light our world with your smile and our days with your laughter.  It is an honor and privilege to be your parents.  You mean the world to us, big guy.  We bless and thank God for the first 13 years of your life, and we look forward to sharing the teen years with you.

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Happy Birthday, Trooper!

It’s just Littlest and I awake right now.  The rest of the house is sleeping late, mainly because there’s been a lot of sniffles and coughing overnight. The whole family has been down with this crud, one by two, ever since Thanksgiving break ended.  The kids wanted an extended break time but this was not the way to obtain it. 😉

Last night my dad and I assembled a fitness trampoline downstairs.  It’s Trooper’s big birthday gift to help with sensory during the day.  Haus Meister and I are going to put off his special trip to the climbing gym until he’s feeling better, but there will be online shopping for climbing shoes.  My parents had asked me to make sure Trooper e-mailed them his birthday wish list, so one day I sat down with him and opened the “mail” app on his iPad.  It’s the family address, of course, so I got everything ready and told him it was time to type.  He picks out the letters one by one, sometimes grabbing my finger to type if he’s in a hurry (I let my hand go limp so he is the one guiding) and sometimes he picks them out with his own finger while I lightly keep a touch on his wrist to remind him to focus.

I would like climbing shoes for my birthday.  Mine are too tight. 

And then he was done, but I was impressed once again that he realized the need and wanted to express it.  He’s sharp as a tack, that boy, and a little snarky sometimes, too.  One time during these little typing sessions I began to wax poetic about how wonderful it was that he could communicate so well with us now, and was there anything he wanted to tell me right this minute?

Be quiet.

Followed up with his cheesy grin so I’d know he was joking. HA!

He hasn’t been horseback riding now for about eighteen months, and he doesn’t miss it.  After his tenth birthday, the instructor we liked switched jobs, and then he was passed around through instructors who really didn’t have a way to challenge him and couldn’t be bothered to push him harder. The Special Olympics he was in?  I didn’t mention it at the time but they hadn’t even made it possible for him to guide the horse himself.  Crumbs, the terminology escapes me, but there were no reins for Trooper to hold himself. As his grandmother had been taking him to his lessons, she had said how much nicer it was that he was learning to use the reins himself.  I never got to see that. They put the rope on for the instructor to pull the horse around the arena, and Trooper just sat up there for the ride. Afterward his new instructor changed times to something less manageable for us, so we called it quits.

By then, he’d found his new sport.

I like climbing better than riding, he typed once. They never let me lead the horse. I was always being pulled around. With climbing, the auto belay means I can do things myself. I like to get up the wall. It makes me strong.  I really like it when I can get to the top of the wall.  I feel like I can do anything.

And when he’s not on auto-belay? His Dad has his back.

Nicholas at High Point

Happy 12th Birthday to our high climbing Trooper. Our inspiration and our hero.

And if you need to remember how he almost didn’t make it, how he was supposed to ruin our lives, and how happy we are that he’s here? 

 

 

Words from Trooper

Before Christmas I had an inspiration (thank you, Guardian Angel!): instead of having Trooper practice handwriting with random words out of a textbook, I would verbally ask him questions and see if he would respond.

And he did.

So every day we practice and you can see the joy and relief he feels to finally tell us the thoughts in his head. In the following “conversations,” I am speaking to him and he is writing. Sometimes he gives a lengthy answer, and sometimes he gives the monosyllabic response of the 11yr old boy who would really rather not talk right now. 😉

Me: what’s something you want me to make for you?

Trooper: Mac n cheese

(Go figure)

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Me: Do you think you want to drive a car someday?

Trooper: yes

ME: what kind?

Trooper: truck

ME: a little pickup truck?

Trooper: yes

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Me: Is there a question you’d like to ask me today?

Trooper: How do you spell Indianapolis?

Me: (blinks) um…like that.

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Trooper practices typing by emailing his grandparents. One day he began instructing my dad as to what type of yogurt is best. We have a running family joke that Trooper missed our recent bout of stomach virus–and past ones–by a daily quart of plain Dannon.

Trooper: I like yogurt. You will too. Just the plain kind, not the silly kind. The silly kind has fruit in it.

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Me: You’re going to see Mr. R (his wonderful speech therapist) today. Would you like to tell me about him?

Trooper: Mr R is my friend and my helper.

And yesterday I asked him something that had been on my mind for years. The answer is what apraxia is like for the boy who has had to live with it.

ME: when you were real little you tried to say some words and then stopped. Do you remember why you stopped?

HIM: I stopped because I couldn’t think of the way to get my words out.

ME: But you had the thoughts, the words all the time?

HIM: yes

Hilarious or heart wrenching, I love these conversations. I love not having to guess what he’s thinking! Because sometimes I have guessed wrong, I’ve found…except about the pickup truck. 😉

An answer

I’m trying to coherently write on a weighty subject while attending to the whims of a sleepy teething baby (whose method of dealing with teething is simply to keep awake).  Please forgive all bad writing and mistakes. 🙂

Back in December, Sunshine had an MRI scan done to check for any possible unexplained reason for her speech delay and ASD symptoms.  It always seemed to us that there was something eluding us, some reason why she was so barely below her milestones.  It wasn’t always enough to alarm, except mainly in speech. When we took her to speech therapy, the thought was that perhaps it was her hearing.  Doctor’s referrals and three tests later, her hearing is pretty normal.  Then we managed a waiting list to see the developmental pediatrician, who ordered the MRI.

Today she called with the result.  There is a mild abnormality in the front left lobe of our daughter’s brain.  It would be what affected her speech development, and it happened during her time in utero.  How or exactly when is uncertain; except for the flu the day I went into labor, it was a routine healthy pregnancy.  “This happens more often than people realize,” the doctor reassured me.  She said we’d discuss this further at our follow-up appointment in a couple of weeks but we could expect an occasional check in the future to see how her brain progressed and just see what our Sunshine can do.  That was that.

I took it okay at first.  After all, it was an answer to our question about her delays.  And then my chest tightened and I could hardly breathe.  I wanted to sit somewhere quiet and think about this, but I couldn’t. There was too much going on.  I’ve just been calmly told our daughter had brain damage before she was born and in four hours we’re throwing the first birthday party for her and her brother with some relatives, Haus Meister’s back is hurt from a muscle pull, and the kids haven’t cleaned up that mess like I asked them…. And all the while wondering how this happened and whether I could have prevented it.  How to explain it to people? What to do next? Little by little I began to piece things back together.  After all, Trooper had a much worse prognosis the day they told us about his Grade 3 IVH (a significantly greater issue).  These days he’s doing multiplication and division in his head! And really, did today’s news change anything? No. It just made it all click. Sunshine still makes her own progress, and everyone sees improvement with her as the months pass.  She names shapes and colors.  She can count up to 30. She calls me “Mom” now, and she didn’t do that last Christmas (2013). 

The day went on regardless and then Haus Meister came home from work with the birthday cake in tow.  He had been home for lunch when the call came, and just seeing him again brought me out of my tangled thoughts.  That happens a lot, I confess.  He’s my voice of reason. 😉  I realized again that there was nothing we could have done to prevent it.  I was pretty healthy and no one saw a problem during that pregnancy.  Sunshine is still our sweet, bouncy, enthusiastic girl with a zest for life and zero fear. She’s blooming at her own pace, but always there has been progress.  She’s never lost anything she’s gained.  I could breathe again, and enjoy the party.

Tonight Sunshine received an 18″ doll for her birthday.  It’s a generic one, not an American Girl doll like Princess’ was, mainly because I do not trust Sunshine to refrain from cutting the doll’s hair.  I do not trust Sunshine to refrain from cutting her own hair. But to Sunshine it was perfect.  Her Grandma made a dress and kerchief for the doll to match the heroine of Sunshine’s favorite cartoon. Sunshine recognized that instantly and carried the doll around the rest of the evening.  She danced with it, sang with it, introduced it to “Rose” (Princess’ retired Felicity doll), and then Sunshine tucked it into bed with her at bedtime.  She wouldn’t have done this last year, either. When I replaced the kerchief on the doll’s head, Sunshine said, “Thank you, Mom,” and had the doll give me a kiss. I treasured it.

So again what does this mean for the future? Just that we know what she’s working hard to work around now. 🙂 And as always we’ll give her the best we have in us–unconditional love, and a helping hand or two.

Sisters and their dolls....
Sisters and their dolls….

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Pause for a prayer or two

Oh there’s so much I want to write about here. Trooper’s improvements over the year…. our Advent decorations…. Littlest’s first tooth…. but tonight those things fell into the background when I read the news that the Lenaburgs need our prayers.

Mary and Jerry and their son Jonathan have been caring for their Courtney for 22 years.  Courtney’s time with them can “now be measured in days.” Mary’s blog has been a real inspiration for me these past four or five years as I’ve followed her stories of the ups and downs, the joys, light, sorrows, and glories of being a special needs mom.

Courtney took a turn for the worse around September, not long after her 22nd birthday.  Her parents hosted a big bash for the birthday and asked all the blog readers and Facebook followers to send a card.  Rascal and Princess complied and ever since we’ve been keeping them in our prayers before school.

Won’t you please join us now as we keep vigil with them as their dear girl prepares to pass to Heaven?

Thoughts at the end of the day of Sunshine’s evaluation

When it was first confirmed we are parents of an autistic son, I half thought of buying one of those puzzle piece ribbons for the van.  I’m kind of like that; right now our massive beast of a van is the repository for stickers detailing where we’ve driven it (Vail being the most prestigious looking–we don’t mention that it was during the off season).  But I let it slide.  I appreciate the thought behind the puzzle pieces.  I appreciate seeing it on other people’s cars and know that we aren’t walking this road alone.

But there’s another piece of our family puzzle I haven’t mentioned much simply because her story is unfolding at its own pace.  We have in our care a special little rosebud whose petals are slow to unfurl. We get glimpses of the beautiful flower she’ll become, but still she needs our help, our hands, our voices, our love, and our patience to support her.  You know her by her blog-pseudonym of Sunshine, and a ray of sunshine she truly is to all of us.  And as I watch all our darlings grow up around me, I realize that to me, there is no missing puzzle piece.  In fact, sometimes, they are each of them a puzzle, and sometimes the typical ones are more of a complex jigsaw to me than the two who are supposed to be more of a challenge. 😉  This isn’t knocking the puzzle piece design or anyone else who likes to use it.  I just chose not to buy one for my van because there’s a lot on my van already.  And as much as I want the general public to give my autistic children a break, I also hope someone tries to do what we do, and look past the evident differences and see the wonderful side of them we are privileged to see.

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{Pretty, Happy, Funny, Real}

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I have some catching up to do. One member of our family celebrated her patron saint’s feast day not too long ago, and this year that day means a dessert in honor of the saint and a new small icon for our wall. It really is rather Pretty even though my camera doesn’t do it justice.

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Last week I was AWOL from the blog as we were going back to St. Louis for Trooper’s follow-up with his absolutely amazing specialist. My parents came down for a mini-vacation (not that they had much time to relax) and watch most of the kids while Haus Meister, Trooper, Rascal, Littlest and I headed across a few states.

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Trooper happily watched trucks for hours. He likes them as much as ever, which keeps him from being as bored as say, his brother, who began snapping pictures on my phone.

To relieve the tedium of the drive, Haus Meister produced a slackline out of the boot of the car (ok, so I’ve seen a few too many British car shows) because you never know when you might need one of those. At a rest area he rigged it up between two trees and it helped the boys stretch their legs.

IMG_1265They all really enjoyed it, although Haus Meister never quite made it across without being tackled by Rascal or pulled off by Trooper, who didn’t feel like reciprocating the help and was impatient for his next turn. Happy boys.

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We did visit the Gateway Arch on the day we left and the lines were so long we knew we couldn’t get in, get our tickets, get a ride on the tram, see the view, get down again, and then drive home by 1am. Sigh. A bit of real there.

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But we had fun elsewhere, too. 🙂

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Meanwhile, back at the ranch, our wooden trains are out again. The earliest seasons of Thomas the Tank Engine vie for screen time as the cheeky little engine enters his third cycle of being tops in our house amongst the preschool set.  I prefer “old school” Thomas to his current CGI shows, and so does Sunshine.

And to end on a little Real…

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I saw this at Lowes the other day. I would love to have it take over the foyer wall. I would love it if it would take over the foyer wall and not have the Mischief Squad practice rock climbing techniques using the coat hooks. Right there Miss M sees it as a potential princess dancing stage but if Sunshine was with her you’d better believe the climbing would start. 😉

 

Double Digits

I just couldn’t let another week end without mentioning a HUGE EVENT in our family life.

Someone turned 10 last week.

A big boy and his preemie sleeper
A big boy and his preemie sleeper–taken in 2009

One of the reasons I don’t bother writing birth stories is that it’s usually more information than the male readers of my blog ever needed to know. Another is that Trooper’s birth was scary. I was 22, six months married, and had absolutely no idea what was going on, why my water broke, and whether or not the baby would live. In fact, I was sure he would die. Just writing those sentences puts me in a tremble.

Then the nurses and doctors came in with their prognoses. One thing that cheered me was that the statistics were getting better for Trooper–he’d have about a 35-40% chance of survival.

But he would never be “normal.”

He would never be happy.

He would ruin our lives.

We would probably divorce over him (we were told this twice).

“Are you sure you want us to keep him alive after the birth?”

And through my shock and pain and fear as I lay there all I could think of–and this is honestly what I thought–He is a baby born into this hospital. That makes him a patient here. Why the h–l wouldn’t you try to keep your patients alive?!?! Isn’t that your JOB? Isn’t that what you are here for?!?!?!?! Isn’t that why we came in?!?!?!

Instead in a small voice I said, “If God wants him God will take him. Keep him alive, at least let us baptize him before anything happens.”

The moment he was born he was whisked to the waiting NICU staff. I remember Haus Meister saying, “He’s here, he’s ours, he’s beautiful.” They paused the briefest moment for Haus Meister to take the tiny holy water bottle we’d grabbed on our way out the door and perform an emergency Baptism. And then I knew Trooper was going to be taken care of, and I relaxed a bit for the first time in 24 hours.

10 years later….

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He’s here. He’s ours. He’s a ham.

He has cerebral palsy, autism, and sensory processing disorder. He has challenges he fights daily. He is so proud of his accomplishments.

He is, and I stress this, THE HAPPIEST KID I HAVE EVER SEEN.

He has enriched our lives beyond measure.

We are still happily married.

We thank God for each day we have with this boy.

We thank God for the special nurses who fell in love with our boy, especially the night shift team we got to know so well–it was the only time Haus Meister and I could visit together. Rusti, Courtney, Christina, Tricia, and Debbie. I have never forgotten you. Drs. Kennedy and Thomas, God bless you too. I know how you fought for our boy. All the respiratory therapists, one of whom actually passes us in the speech therapy office and smiles to see that fragile baby now standing 4’9″ and weighing 74lbs.

No, it is not an easy road to follow, raising a child with special needs. It challenges you, stretches you–even sometimes to what you think might be the breaking point.  You learn more medical vocabulary than you ever thought you would need. Your speech/OT/physical therapists go on your speed dial. You learn to rearrange your life to adapt. Some activities you drop all together, some dreams you postpone indefinitely, and sometimes it takes you a while to figure that out.  Sometimes you fight denial for days, months, years. Sometimes you find yourself fighting the apathy of a world that doesn’t understand the value of a life that isn’t “normal.” You can couch it in any sugar coated term you want, but in boils down to the fact that they think your kid isn’t normal, that they think your kid is useless. 

No one is useless. And so you pick up and go on, knowing that it’s your lifework now to help this person entrusted to your care. It is both your cross and your reward. 

What do I mean by that? Sitting next to the hospital bed for the nth time isn’t a treat (cross). Seeing him smile when he does his homework correctly–we both feel like a million bucks (reward).

It is worth it every step of the way.

Once as we left the grocery store with the bagger pushing our cart to the van–a complimentary service by this grocery chain–the gentleman turned to me and, gesturing toward Trooper, said, “I bet he’s a real challenge for you, huh?” I closed my eyes for the briefest space thinking for the millionth time that I wished people wouldn’t naturally assume that if someone doesn’t speak, then they must be deaf as well. Trooper can hear and process exactly what we are saying. Then I thought amusedly that most of the time my typically developing children give me more potential for gray hairs than the Trooper does.

So I smiled and said, “No. If there are challenges we face them together. We are a family. And we are happy.”

We love you, our big 10 year old Trooper.

You are worth everything. You always have been, and always will be.

We are so excited to see what the next 10 years bring you.

IMG_3098(Watch him ask me for a horse now)

His day to shine

A year ago I couldn’t have imagined this.

That he could wait somewhat patiently during a half-hour delay.

That he would willingly put on a helmet (sensory processing disorder–he doesn’t normally like having anything on his head).

That he could hold his attention pretty well despite an audience, two diesel trains passing, and a hay truck that arrived three hours early (and being unloaded by our favorite: The John Deere tractor).

THAT HE COULD RIDE A HORSE.

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Ok, so he’s probably technically riding a pony, but HEY, that’s no common animal. She’s Hershey the Wonder Horse, an animal gifted with more patience than most humans possess and a household name now. 🙂

Trooper had his first horse show this weekend. He was slated to ride in three events. The people running the show always have the therapeutic riders go first–how nice to have a team that understands these kids!–and Trooper with another boy rode in the first event. They “tied,” so both boys got a blue ribbon. You could see Trooper’s grin all the way across the ring. What warmed the cockles of my heart even more was the evident pride in Rascal’s voice as he said, “Hey! Hey! He did it! He got a blue ribbon!”

Trooper seemed a little distracted toward the beginning of the second event. I could hear him attempting to vocalize and he kept looking back to where we were standing near the ring. Meanwhile, I prepared my phone to take some more video of him once the event officially started. As soon as he saw me raise the device he stopped and grinned again with a quick jerky nod. Suddenly it hit me that he had been waiting for me to film him! He wanted me to capture this! After that he did pretty well with the event. I should add that on two occasions we’ve filmed his lessons using his iPad and he loves to review them. Not a day goes by that he doesn’t watch it at some point. Today he knew this was special and he wanted to be sure to see it.

By the time his third event came up–the sixth of the day–he was tired and wanted to dismount. His instructor told us that he indicated to her his need to stop clearer than anything he’s told her yet. She could understand him right away. That was huge. So although he had already been announced into the ring he was allowed to stop and the announcer congratulated him on a job well done. Trooper just grinned–his ear-to-ear grin–and walked out of the ring the happiest guy in the world. He came right over to us….and took my phone to start watching his replays. My goofy boy.

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Holding his first blue ribbon while waiting between events

I said “a year ago” because it has been less than that since our first trip to St. Louis where he was taken off his unnecessary medication and given other intervention. Around that same time he was given the chance to come here to ride. Are his successes here due in part to said intervention? Or is it because he was given a goal–outside of his usual schoolwork and daily living ones–a goal where he could enjoy himself and reach for something because he wanted to? We always wanted to find something for him that he could do and take pride in. The other boys in the family have the swim team (Trooper only likes the pool if he’s got one of us next to him) and they have Trail Life. This is his. This is his chance to shine.

I know I always end a Trooper post by saying we’re so proud of him. And why not? He’s had to overcome more in his nearly ten years than I’ve had to do my whole life so far–and probably even farther. To have been able to stand there and see him ride that day–a moment just for himself where he could rejoice publicly in an accomplishment…. the words just fail me. Proud almost doesn’t begin to touch it.

I think I’ll send one of these pictures with our annual Christmas card to the NICU where he lived the first 119 days of his life. I hope they still post the cards from their “NICU graduate families” on the front desk like they did in 2003. I hope some parents stop and see how well he’s done and get a new hope from him, just as we derived from the cards 10 years ago during that first month with its many many crises.

Yes, I’ll send one with his huge smile.

Riding right along

It was another whirlwind weekend for the inhabitants of the Haus. Trooper had his follow-up appointment to the Cerebral Palsy Center in St. Louis so we hit the road again. Fortunately the chips fell just so that we were able to take in the Indiana State Fair before leaving some of the bigger kiddos with my parents while we took Trooper and the mini-sidekicks (Miss M and Posey Pie) out to St. Louis.  We also got to go up in the Arch, which was kind of amazing. I mean, you’re looking out over Illinois, so quite frankly the view from the gondola in Vail was 90% more spectacular. But the arch itself is an engineering wonder, so there you have it.  Yes, I got pictures. I just haven’t bothered to get them off the phone yet. This means you might actually get more than one post from me this week!

Anyway, not writing about that tonight. I’m travel-weary and I caught a baaaaad summer cold on our adventure. What pleased me enough to sit down and blog was an e-mail I received this morning from my mother-in-law. She does me the great favor of driving Trooper to his therapeutic riding sessions (she’s good with horses herself, having ridden dressage as a teenager and she used to live on a horse farm).  The gist of the e-mail was something like this:

Talked to Mrs. H today (riding instructress). How would you all like to enter [Trooper] into the Special Olympics riding session this September? She would lead the horse but he would give the commands and [do things like put rings on the horses ear or point with the baton]. If you want to do this he can start special practice on Friday….


I was cheering before I even finished. There was no way I’d turn down this chance for our boy.  The doors that have opened for Trooper this year are many and they are all amazing, but I never thought I’d see him participate in something like this.

He’s going to be so happy, and we are so proud of him.

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I laughed when I got this picture and said, “Look at him! He thinks he’s ‘The Man from Snowy River’ or something!”