You'll Shine

"Sometimes I see you stuck

For such a long time

A daily nothing new

Pretend I don′t mind

With lists of things you'll never do

Until somehow you do

And you do — you do — you shine"

-Song from Rachel Coleman "Baby Signing Time"

We all have constant "Baby Signing Time" songs in our heads because that is Roman's playlist in the car.  This song in particular really gets me these days. I have a new found compassion for biological mothers of kids and adults with Down syndrome. First, I want to explain why I say "biological moms." It's because I'm an adoptive mom, and I very deliberately chose this life. I knew it was going to be hard. I knew Roman would require extra patience, that he'd be perpetually behind in milestones, that he'd likely have medical problems, and that all my experience as a mom wouldn't fully prepare me for this new world of therapies, ARDs, and IEPs. Biological mothers think they're going to have a typical baby for at least some amount of their pregnancy. They get a diagnosis handed to them that they didn't ask for. Every pregnant mom wants a healthy "normal" baby. Every mom wants their baby to meet and beat those milestones. They want their baby to be the smartest and most attractive.  I was one of these moms before I was an adoptive mom.
 

Last week I had a tour of a private preschool that has a 50:50 ratio of inclusion for kids with special needs. I'm trying to figure out where Roman will best thrive next year. I walked in for the tour and they "needed" me to fill out a developmental checklist. I immediately bristled inside. I resisted and gave some push back because sometimes people try to tell me I have to do something and it turns out they just want me to do it and will back down if I question them. Why didn't I want to fill out this form? First of all, I was wearing Roman and he's known for grabbing at anything that I'm trying to write and moving his face right in front of my face as I try to see around him. We have to fill out papers at the doctor all the time and this is not an easy feat when I am wearing him on my front. But most importantly, it is so darn depressing to check the "rarely/never" box next to a list of age appropriate milestones so many times. I mentioned above that I knew Roman wouldn't reach milestones on time. I knew it; I know it now. I chose it. And it is still a gut punch. I don't get it. Maybe I thought I'd love him in a more objective way, that I'd be able to look at this rationally and not so emotionally. My heart though.  It cries out for my boy, "I'm so sorry, buddy, that this is all so hard for you. I'm sorry every accomplished task is followed up by a list of new tasks for you to learn. I'm sorry we are always pushing you. I'm so sorry, baby."  I think he's the best, and I want everyone else to see how amazing he is too instead of seeing a list of things he can't do. 

They were adamant that I fill out these forms though.  It colored my whole day as it usually does.  It left me feeling heavy with despair, and I don't usually have a good fast way to shake it off and replace it with hope.  This song kind of helps though.

I was just thinking that if I, an adoptive mom, take these moments so hard, how much harder must it be for someone who didn't chose this, who wanted a "normal" baby. The bio moms must scream inside their heads at these moments, "Why can't my child do these things!!!"

Of course, he's worth it!  It was just a 'hard' that I didn't expect going into this adoption.  I thought I knew enough that this wouldn't hurt my heart.

I'll end my musings today with another part of the song (by Rachel Coleman) that leaves me with more hope.  Insert "Roman" for these random names.

"And Sammy will do what Sammy will do when Sammy is ready to do it

And Trevor will do what Trevor will do when Trevor is ready to do it

And Lucy will do what Lucy will do when Lucy is ready to do it

And they′ll do it in their own time

Yeah, they'll Shine"

Bluebonnets for Our Littlest Texas Transplant

March 23rd is World Down Syndrome Day, and that is why I took these photos of Roman in his gold bowtie that was gifted to him by the DSA here in San Antonio when we adopted him.  (Blue and gold are the Down syndrome colors.)  The tie was way to big for him then, but now he is rocking it.  These bluebonnets were in my neighborhood if you can believe it.  I brought Brian along to be my assistant photographer and my official snake checker.  I am happy to report that there were no snakes to be seen...just this cutie pants.

Seriously, does it get any cuter than this?!  I, for one, am in love.

 

Our Football Fan

That smile!

Roman is a big football fan, and he loved loved loved going to a real live Aggie football game at Kyle field back in November.  His daddy is really hoping it sticks since none of the other boys are super interested in football.

He is often found in this position when a game is on.

Here's a couple of pictures from his first Aggie game back in November. He had THE best outfit, and we had the best seats too.   He loved the band and all the noise!
 

"All of Me"

Isaac is playing "All of Me" by John Legend and Roman is acting all Ray Charles, but without the sunglasses.

 Yes, yes.  I am crying in this video.  Roman's therapist had changed his straw and cup (same formula) the day before.  He "could" drink out of it, but he was refusing it this particular evening.  We tried everything and he was just screaming and angry that he couldn't have his old straw cup.  When everyone had finished dinner and Isaac started playing the piano, I sat there next to him because Roman loves to "play" the piano with him.  Brian was videoing this because, of course, it is adorable and I was just thinking how exhausted I was from the struggle and how wonderful and very worth it Roman is.  They were tears of joy and struggle all mixed up.

He ended up drinking from the cup when he was calm and distracted by the piano.  We have since backed up and are working on that straw and cup in therapy and trying to push him, but not too much.  It's a very fine line.

Roman's Heartiversary on January 21st!

 

Today is Roman's heartiversery! It's been 2 years since he had his heart surgery to correct his complete AV canal defect. Roman would not be alive if his surgeons had not been able to perform this surgery for him. We thank God for his surgeons and for the medical advances to make his life possible. He is doing great! His cardiologist said his heart looks good and cleared him to be seen in one year for his next checkup. Although he has a couple sutures trying to work their way out from his chest, it is otherwise closed, uninfected, and we've been told not to worry about them. 😊

He's had another rough autumn/winter so far with many illnesses. He had COVID and RSV again, as well as Strep, a couple ear infections, and a sinus infection. He did get his second set of ear tubes on December 12th, and that has been uncomplicated which is always our hope.  

We are, as always, so grateful for all the prayers 🙏. He's truly been such a blessing to each of his brothers and sisters and to Brian and I. Here's to another year with this little man with a big heart. 

His face has had this rash for a while due to all the slobber and snot that are constantly on his face.  We are alternating between vaseline and aquafor right now which has worked in the past, but not so well right these days.

Having his formula with Daddy and Luna while watching some football.  He loves football and basketball so far.

This morning, the day after his heartiversary, he had speech therapy.  I showed her his list of words that he can say, he demonstrated some of them during therapy, and she said that she has never had any child with Down syndrome with this many words.  She said he is really bright.  That just made my day!

Does he talk?

At his cousin's house, he picked this up immediately.

His hair got so long in the last month or two.

Watching his brothers jump on the trampoline.  (Before the cold snap, obviously!)

The boys were taking a selfie.

(After his haircut) He was saying "Amen" here after prayers for my cousin.

People often ask me if Roman talks and I've always told them no, but he does say some words.  Here is a list of his current words as far as I have kept track of.

Mama (at 6 months old in hospital after heart surgery.  I have lots of witnesses 😉)

Dada

Hannah

Luna* with sign for dog

Genna

Judah

Isaac

Night night

Yay*

Bye (usually says with d sound)

Bubba (what he calls his pacifier) with sign

Bubbles with sign

Pop

Help with sign*

Up with sign*

Down (usually just the d sound) with sign*

On 

Off

Light with sign

Shirt

Shoes with sign

Shhh with sign

Amen with folded hands

Book with sign*

Please with sign

Cheese with sign and a smile 😉

Juice with sign

Bed with sign

All Done with sign

In case you lost count that is a whopping 28 words, and I'm probably forgetting some.  Unfortunately, many of them are difficult to understand if you're not in his daily life.  Also some of these words he will repeat for us but will not use spontaneously.  I put a star next to the ones he consistently uses spontaneously, on his own without prompting.  I often have to tell him to "turn on his voice" if he is signing something he knows how to say.  That is a phrase the speech therapist uses.  He has more than double this amount of words in signs.  He picks up signs crazy fast, but because he lacks the dexterity many of them look similar and we have to use context to distinguish them.

Favorite book: Chicka Chicka Boom Boom

Newest accomplishment: drinking from a hard twisty straw, the twisty part makes it harder to suck.  So his cheek muscles have to work harder.

Biggest Struggle: Eating, specifically, any actual solids even dissolvables if not mixed with smooth baby food

Health:  currently on antibiotics for a suspected sinus infection on the heels of the antibiotics for strep throat.

Throwback Post #3: 191 Days (December 5th, 2022-June 18th, 2023)

This is just a snapshot of some different aspects of our life during Roman's 191 days with an open chest wound last year.

Where it all started...this was before the first minor day surgery to remove the broken sternal wires.

Waiting for Daddy to pick us up at the front of the hospital afterwards.

Unfortunately, four days later, on December 9th, he had a half a grapefruit sized swelling on his chest, and he had to have an emergency surgery to drain, clean it out, and place a wound vac on.  That began a longer journey than anyone expected to getting a closed chest on June 18th.

During these 191 days, he was hospitalized 5 different times and had 5 more surgeries in addition to the first two mentioned above.  There were two more serious infections, one PICC line, and countless ER visits, wound vac changes, wound checks, bedside debridements, IV's, MRI's, and tears shed.  It was rough for sure.  I had to have a bag packed every time I drove to get a wound check in case they admitted us which was two or three times a week for the entire six months.

The first wound vac (in my maroon fanny pack to keep him from pushing buttons) that he got was small enough to be drug around behind him and not pull on the suction.  However, it also had a super short battery life and had to be plugged in a lot more than just at naps and bedtimes.

Lots of swing time was one way we kept him happy and busy.

Learning to use his Honey Bear straw cup.  This was his first time holding it on his own too.

I was stuffing his clothes with a blanket for a long time because I thought it would make him more comfortable, but, as his CT surgeon joked, it was more for me than for him.

Defying all odds and learning to stand even with a wound vac!

We got a 5 foot by 5 foot playpen for the living room when we realized the wound vac was here to stay for a good while.  He needed a place to be able to play and not go further than his tube, AKA "leash," would allow.  It turned out to be a great investment, and, now a year later, even without a wound vac restricting him he is still happy to play in it.  Sometimes I'd say he even feels safer and happier within the boundaries of this comforting familiar area.

This is how he slept with the wound vac in the black bag at the bottom "hidden" behind his stuffed animals with the cord strung through the bottom corner under the mattress that plugged him in to the wall to recharge the batteries while he slept.  The cord did get wrapped around him a couple of times, once around his neck in the middle of the night.  Thank God that he started moaning and crying out because I was sleeping right next to him and was able to unwrap it.

The great thing about this play pen is that it rests on the ground and anyone could get in with him to play if he got bored...like in this picture.  The kids were constantly hopping in and out to entertain him.  His therapists got in sometimes too.

Here's one of our creative ways that we used to give him time out of the playpen and allowed some exploration.  We tied the wound vac into the wagon.  We still had to watch carefully to make sure it didn't get stuck on anything.  If he pulled too hard on it, it could loose suction and that would mean another 30 minute drive to the hospital ER for the doctors to replace it.  We did have to make that trip about a half a dozen times over the 191 days that he had the open wound.  One time it lost suction when we were out of town, and we made the decision that we'd seen it don enough times that Brian and I could do it ourselves.  We did it!

Fell asleep to "Sweet Child of Mine" while awaiting anesthesia.

Practicing eating food at the hospital which for the most part was majorly put on the back burner during this nightmare.

Brian and I took turns staying overnight with him when he was in the hospital.

 But on June 18th, his wound was officially closed and he took his first unassisted steps!  Praise God!  No one knows why this happened, and we just have o trust in Jesus on that one.  But, oh, how grateful we are that it is finally done.  As I write this in January of 2024, he does have a couple sutures trying to come out around his scar, but so far none are inflamed or any cause for concern.  Although we will continue to pray for his health daily.  He currently is sick again; he started showing signs of illness within days of finishing his antibiotics for the strep.  Oh, this boy!