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how one family navigates open adoption with two different birth moms: A guest feature by Kate Demien

Mark, Kate, Lydia, and Eli Demien
Photo Credit: Rebecca Reale

Thanks for stopping by today! 

I have been so excited to tell you the newest addition to BOYCE LANE….Friday Guest Features

We, by far, are not the only ones going from Type A to Plan B.  If fact, I think we all can relate.  Right? Think back to 16. Does your life look at all like you thought?  Reminds me of that Garth Brooks song: Unanswered Prayers. There is a line that says, “some of God’s greatest gifts, are unanswered prayers.”  I am so glad some of my dreams fell on the cutting room floor. 

Anyway, it didn’t take me long to realize as I started blogging more, that I am surrounded by people that are not just surviving this “new normal” but actually thriving.  Many of them are not bloggers. They are just humble, beautiful people that happen to sit on my couch once in awhile. So, you know me, I just had to see if they would share! Nothing like gently nudging friends out of their comfort zones! Ha! So, at least once a month when you stop by, you may find one of these wonderful friends sitting next to you on the couch.  My hope is that their story will encourage you in your own Plan B.

First up is my dear friend, Kate!  She has graced my couch more than I can count.  I love learning from her.  She is a great mixture of humor and wisdom, listener and story teller, and loyal until the sun comes up.  She’s not afraid of telling you the truth or licking your child's germs.  She is the woman you always pick first for your team, no matter what game of life you are playing, because you know you have a better chance of winning when she is next to you. And, she happens to be gracefully navigating her journey with two open adoptions.

So this week, meet Kate!

Kate writes:
5 years ago, my husband Mark & I shared the stage at Immanuel Church along with 4 other couples to discuss something we all were wrestling with….PAIN. More specifically…Where is God in the midst of life’s biggest storms? The Boyce’s had just recently received Jayden & Brooklyn’s diagnosis and just days prior, Mark & I had our 5th miscarriage in a row.  We all were so vulnerable… so raw.  

I’ll never forget one of the worship songs that Sunday, “Savior.”  “You’re my Savior, Restorer, Rebuilder, Rewarder.  My Refuge, Redeemer, Defender, My Healer…Savior.  I stood there singing those words with tears in my eyes, feeling like God was so far away.

So much has happened since that day and it’s my pleasure to give you an honest snapshot of our adoption story.  Thanks Stef for the opportunity to share!

After a few years of marriage, Mark & I wanted to start our family.  We started with a plant, then got a dog and soon after felt ready to join the “kid club” like many of our friends.

That desire marked the beginning of a journey that brought Mark & I to our knees.  Over the next 4 years we had a total of 7 miscarriages.  We went to 3 different fertility specialists and endured countless tests, trying to determine what was causing each pregnancy to abruptly end after weeks of positive blood draws and increased hormone levels.  All of the testing came back normal. No doctor could give us a reason why, which made those years even harder to understand.  

Finally we were referred to a Reproductive Immunologist that specialized in recurring pregnancy loss and found out that I have a rare chromosomal mutation that causes my body to attack a fetus like a foreign entity.  After learning how much money and drugs it would take to help me sustain a pregnancy full term, we began looking at all our options, adoption being one of them.  

At that time, adoption seemed like a last resort, it meant I failed.  With each passing miscarriage I felt like we were getting closer and closer to “having to adopt” and that scared me.  Ultimately, God had to bring us through a journey to open our hearts to His plan…the best plan. 

We began our adoption journey in early 2011 having grieved, and ultimately accepted, that we would never have biological children.  After years of trying to force a square peg in a round hole, I waved my white flag and was ready for whatever God had in store. And surprisingly, I was relieved, because I was finally in a place of complete surrender.

After mounds of paperwork, hours of training classes and one failed adoption, we were finally matched with Lindsey.  She was 7 months pregnant, carrying a baby girl.

BUT…she wanted an OPEN adoption.  Uh oh…how open?  What will that look like?  Will this baby girl be confused and think she has 2 moms?  Will she regret her decision and try to get the baby back?  Will she just show up at my door unannounced? 

Everything changed when we stopped saying SHE and started saying LINDSEY.  She was a real person, going through the most difficult thing imaginable and God said…WILL YOU LOVE HER?

After giving birth, Lindsey questioned her decision and she struggled for weeks with her options.  It was a scary time but Mark & I knew our role, we needed to keep loving her.  Lindsey appeared in court and terminated her parental rights to Lydia on February 10, 2014 and in doing so made us parents.  It was the happiest day of our lives, but knowing it was the worst day of Lindsey’s life made it bittersweet.  

Lydia Ashley Demien was born on January 10, 2012 weighing 5 lbs.. 8 oz. and 18 in. long!

God answered our prayer a second time by sending us Samie through a long time relationship with my best friend Kathrina’s mom.  On a beautiful day in May, Kathrina & I, along with Lindsey, drove to meet Samie and her mother to discuss open adoption.  Lindsey was a rockstar, telling Samie how wonderful we really were and if she did choose adoption for her son, it would be the best decision she could ever make for not only him, but for herself too.  

Samie choose adoption to protect her son from an abusive birthfather and to give him the life he deserved.  I was able to be in the delivery room when Eli was born.  It was a gift witnessing those first moments of new life. It is something I will never forget.   Samie terminated her parental rights to Eli on July 24, 2014 and in doing so completed our family.

Eli Paul Demien was born June 28, 2014 weighing 7 lbs. and 18 in. long! Photo Credit: Rebecca Reale

Are we blessed beyond measure because of open adoption?  Yes.  But it doesn’t come without its share of ongoing challenges that continually remind me of those fears I had in the beginning.  

Maintaining relationships with two very different birth moms can be complicated.  Why?  I’m no expert but I’d say it stems from grief.  Some grieve privately and some grieve publicly.  Placing a baby for adoption is traumatic.  No two stories are the same. My job is to love these young woman and point them to Christ.  Some days are just challenging.  But with healthy boundaries and trusting God’s will, it’s worth it.

Today I am so proud to say I’m an adoptive mother of 2 beautiful kids, both in open adoptions with their birthmothers who I communicate with often and we see several times a year.  Our visits are sacred time spent making memories my kids can look back on and KNOW they are loved by so many.  

God choose OPEN ADOPTION for my family and has equipped Mark & I to thrive in it!  It went from being my biggest fear to my passion. My plan B to God’s best for me.

A couple Sundays ago Mark got a text from his mom that read, “5 years ago today you & Kate spoke on stage at church about your miscarriages” and guess what worship song was playing when he read that text?  
[listen here] 

Thanks, Kate for sharing! We all are so honored to get a snapshot of your journey. I know I have learned a lot about open adoption, and what a beautiful opportunity it can be for families! 

Friends, thanks for stopping by! Please feel free to share Kate’s journey with your friends! Who knows who needs to read this today!



taking out the trash: a garbage lesson on Sanfilippo

Ever heard of AV9?
Me neither.

Until Ohio. Until gene therapy headed into the neighborhood of Sanfilippo.

Last Sunday, we packed the kids, the strollers, and the air mattresses. We shipped Ellie to grandma’s and headed off on our seven hour journey to Columbus, Ohio.  We settled into suite 319 at the Ronald McDonald house and thanked God for a good car ride.  

After a sleepless night, we packed up the kids and crossed the street to Nationwide Children’s Hospital for our six month visit.  The two day visit consisted of developmental testing, physical ability testing, and a physical exam.  

The kids did great, all things considered. And, so did mom and dad.  I even think we laughed and smiled a bit.

To help you get a better understanding of Sanfilippo, let’s review. Jayden and Brooklyn were born missing an enzyme that is responsible for ridding the body of mucopolysaccharides.  Imagine your house represents your body.  Each week, (if you live in America) you buy food, eat it, and collect trash.  

Like wrappers.
Or old, rotten food.
Stinky diapers.
Basically things you don’t want piling up around your house.

So on trash day, you roll out your collected garbage to the curb for the garbage man.  When you get home from a long day at work, you grab your empty cans and roll them back and start the process over.  

Except on those holidays, right? 
Or those days that you forget to put the cans out.

And when that happens, the trash builds. It starts to stink. It starts to accumulate.  And over time, if the garbage man never comes, the trash begins to erode the very things it sits on. [think the tv show, Hoarders....yikes.]

Well, Jayden’s and Brooklyn’s houses don’t have a garbage man. There is no Mr. Enzyme coming to pick up the stinky mucopolysaccharides.  And so they sit.  In the brain and central nervous system and destroy it.  

And, as you guessed, if Mr. Enzyme never goes down their street, they get an eviction notice.  
Outrun by trash.

Which is why the residents of Sanfilippo, and neighboring friends and family, have started a petition to get these darn kids some garbage pick up.  And this year, after millions of dollars, and decades of research and development, a garbage truck has been found that will fit down their street.  

Science shows it worked in mice models, essentially stopped garbage pile up.  As soon as Mr. Enzyme showed up, he began to empty the cans each week for those brave little rodents

We are still in negotiations about the old, piled up stuff. And, it’s still unknown what the condition of the yard will be after years of garbage sitting on it, rotting it away.  

It’s the brain, and there’s a lot we don’t know about the brain.  
And mice?  Well they are not humans.

Enter onto the scene: clinical trials.  Doctors are choosing a few “homes” to send the garbage man to so they can watch what happens.  

There is no guarantee the garbage man will be able to navigate the tight roads. 
There is no guarantee the grass will ever grow again.
There is no guarantee that the house will even know what to do. I mean, they have never HAD a garbage man before. Will they remember to take the trash out?

So, Ohio is essentially a tryout.  The natural history study is collecting data from 20 kids to see what neighborhoods will benefit most from getting Mr. Enzyme.  Did I mention there are many neighborhoods, and for a number of reasons, Mr. Enzyme can’t put them all on his route?  At least not yet.  Not until he runs a number of test routes and the bugs get worked out.

First cuts are going to happen any day now.  Parents are waiting. And instead of looking out the window for the garbage man, we are watching for the mailman.  He will be stopping by with a letter letting us know if we made the cut.  


Each kid in the study is being tested for antibodies.  In sticking with the garbage man story, it would like the home has no road access for the garbage truck.  The house would actually attack the garbage truck upon arrival.

Clearly, they are not going to send Mr. Enzyme and the garbage truck to an ambush.  

So we wait.

Positive. We are out.
Negative. We pass the first cut.

To be honest, there are more questions than answers. There are more unknowns than knowns about the study, gene therapy, the body, the brain, and the benefit it will have, if any, for Jayden or Brooklyn.  

They may have too much trash.

I believe with all my heart that in the next decade, every house will get a garbage man.  There will be prenatal testing.  And, if a newborn is missing a garbage man, with a quick shot, they will get one. Forever. There will never be a week that goes by he doesn’t show up.

Even on holidays.

And, AV9? 
It's the model of garbage truck, I guess.

Click on the link to learn more about clinical trials: NATIONWIDE
Click on the link to learn more about Sanfilippo: MPS SOCIETY


#tbt post 2: Sweet Voices

Jayden and Brooklyn spend a ton of time at doctors offices.  Days of being weighed, touched, poked, and tested.  In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio.  We started in July and this was our six month check up.  I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo. I will write more in an upcoming post, but I didn't want to miss Throw Back Thursday!

Enjoy a #tbt post from 2011, and a sweet video from around the same time.

August 22 Let’s get physicials, physicals….

Jayden and Brooklyn (and Ama) went to get physicals/annual check-ups at Lake Forest Peds. What an adventure! It was a rough one with both the kiddos bouncing off the wall! We did shots and the regular height and weight jazz. They really don’t ever tell us anything we don’t already know, in fact it is me usually educating the dr. about the latest visits to Chicago or U of Minn. Overall, we really like Dr Terkildsen (wink wink, Katie!) and feel a special connection to him because he was perceptive enough to get us down to a genetic counselor early in the game to get a diagnosis for Jayden. So, I am pleased to announce….no news, routine appointment!

2015 notes: In the video, we just picked up Brooklyn from visiting Rockford.  I love hearing Jayden say, "Beeba." Routine has become such a treasured word in our family!


#tbt post 1: Jayden

To all my readers:

Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares.  Your words are such an encouragement to keep writing!  

Some of you have followed me since my first blog post, but many of you have stopped by more recently.  My goal is to get a new blog post out every Tuesday morning.  And, in light of #tbt [Throw Back Thursdays] I am going to post a blog from awhile back every Thursday.  (For those of you that don't know what TBT is, it is when people post a picture of something from a long time ago, like when they had braces, or an old wedding photo, or an embarrassing childhood picture on social media.) 

It's funny. I thought this would be a fun adventure,  but quickly realized after looking for a "first TBT" post this was going to be an emotional ride.  With a regressive disorder, things looked a lot different back then....

So, welcome #TBT!

OCTOBER 06, 2009

I wanted to give everyone an upate on Jayden.

We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden's liver was enlarged. He bagan to be concerned about if all these "unrelated" things would add up to a genetic disorder and, after today we think he is right.

We saw a genetic dr. at Children's memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.

Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!

(2015 update: Hurler's is not just on the X chromosome...but we didn't know that. At the time, they were not even considering Sanfilippo.)


Grass is greener

Do you ever have moments where you don't like your life?
Or moments you don't like who you've become? 

I just want out.
I don't want a husband.
I don't want kids.
I want to work in a pub outside of London and smoke cigarettes. 
I want to wear a faded vintage t-shirt, sequin skirt, and boots.

I am sick of the routine.
Sick of the caregiving.
Sick of the burbs and all that comes with it.
Sick of responsibility.
Sick of the hitting, the diapers, the spills.
Sick of the same conversations, the same questions, the same dates.

I want to run away.
I want a re-do.

You too?
Maybe it’s just me.

It's hard writing those thoughts.  It’s like flashing you with my naked emotions. 

Do you have thoughts that you would rather the world not see?

I am ashamed and embarrassed of mine.  My mental tape plays back like this: "You have so much to be grateful for, Stefanie. You are such a bad wife and mother thinking those thoughts. Justin and the kids deserve someone so much better."  Shame tells me, "keep those thoughts secret. Hide them. Deny them.  Only share things that make you look strong, happy, or Christianly."  

But, try as I may to hide, these thoughts are in me. They make me understand why people leave their relationships, their families, their jobs, their lives.  Why people quit trying. Why people run.

The longer it sit here, processing these thoughts, the more I realize that it’s ok to acknowledge these moments for what they are.  Just moments.  They are not how I think all the time. Not even most of the time. And, I think my mental tapes lie. I don’t think thinking these thoughts make me a bad wife or mother. They don't define me. I think what I do with these thoughts determine that.

Once I acknowledge these moments, God gets to work.  As I bring these secrets to light, He starts transforming my mind.  I love that. 

Have you heard that phrase, the grass is greener on the other side? I think we all entertain our “other side” once in awhile. 

That new place.
That new relationship.
That new city.
That new job.

The other side is a really dangerous place stand alone. Secrets grow when they remain hidden.  But if we have lived life long enough, and wandered over to another yard, even just to look....we learn that the grass is not greener on the other side, it's greener where you water it.   

Here’s the painful truth.
Those moments?  Those thoughts I have about running? 
They are all about me.

Me, myself, and I.
They are selfish and prideful thoughts.
And, they really are a lie. Evil desires, even.

They are not what I really want, they are what I want in the moment.  They don’t put God first or people first, they put me first. I mean, its harder to stay and work on your own yard sometimes, isn't it?

God gently reminds me, as well, to be grateful. One of the blessings of Sanfilippo taking up residency on Boyce Lane is that we constantly get to think about the people we love being gone.  We have a father time ticking away reminding us that one day, it won’t be this way.  That these moments, this grass, will soon be gone.

Justin has a green thumb.  One thing you will see him doing every day there isn’t snow on the ground is weeding.  And no matter how many weeds he picks a day, he always finds more the next day.  It is a daily process of finding them, exposing them at the root, and removing them.  

And from observing him, it looks like weeding sucks.  It takes time.  It hurts, bent over on your hands and knees.  And those roots are hard to get out.  If left unmanaged, they spread. They kill your grass.  

And so I have come to the conclusion, I need to weed. I have to take captive my selfish thoughts, expose them to Christ, and remove them.  I have to get on my hands and knees and get to work. Daily.  

And I need to water.  I water my life by being grateful for everything God gave me. I am grateful for the people I get to love.  Grateful for the moments, even the painful, not so green ones.

Caring for my lawn is to take an honest look at my grass.  Part of acknowledging these thoughts is also to say honestly that I need alone time.  I need to break the routine once in awhile.  And, when I am having these thoughts frequently, it's time to take a breather.  And maybe buy a vintage t-shirt or t-shirt, but I don't have to run away.

And that is ok.

The grass really isn’t greener on the other side. 
The grass is greener where you water (and weed) it.


underwear drawer

What are you hiding in your underwear drawer?
I know, personal question.

Maybe jewelry?
Or a love letter.
Or a gun.

I'm hiding something in Jayden's underwear drawer.

It's to the left of his socks.
On top of the "brief" dreams that one day he would be potty trained. 

Bandanas. There. I said it. Fine if he was a cowboy or making a bandana dress for his sister, but these bandanas represent a clear next step in the progression of Sanfilippo.

He wears them so he doesn't soak his shirts with his drool. 


No mom wants to be embarrassed of her child.

Embarrassment is defined as: an emotional state of intense discomfort with oneself, experienced upon having a socially unacceptable act or condition witnessed by or revealed to others. Usually some amount of loss of honor or dignity is involved, but how much and the type depends on the embarrassing situation. It is similar to shame, except that shame may be experienced for an act known only to oneself. 

Also, embarrassment usually carries the connotation of being caused by an act that is merely socially unacceptable, rather than morally wrong.

Have you ever felt embarrassed by someone you love? 

Maybe they wear a dumb shirt.
Or say the wrong thing.
Or there's just something about them you can't change.

There comes a point in Sanfilippo where you just can't hide it anymore.  You just stand out in the crowd. And, if I am being honest, there are times I just wish we fit in.  

Like at dinner. 
Or with our friends and their kids.
And birthday parties and the grocery store.

In the beginning, Jayden looked "normal" enough to blend in as long as he didn't talk or make noises.  We could still navigate public places with only a few glances as he ran by. When we added a wheelchair, we actually got fewer "curious" stares and more "sympathy" looks. 

But here on Boyce Lane, drool is a normal part of life.
No one cares. I take my sleeve and wipe his drool. 

Every morning, we systematically remove him from a toddler high chair, wipe his belly, his neck, his hands, in-between his fingers, his toddler tray, and sweep the floor. Thankful he can still feed himself. 

Do you see why it's easier to stay home? I bet you're uncomfortable just reading this, let alone if we were eating next to you at a restaurant.

During dinner one night, a friend’s child asked, "why is that boy in that chair?" What do you say? Like I know, what am I, a disability expert? So, I just tried my best to say his brain doesn't work like hers.  God made him to do different things down here.

Bandanas symbolize just one more difference that we want to hide, but can’t.

It makes me sad.
And, it makes me mad.

But most of all, it makes me mad that I'm sad and mad. I wish I had the perfect answer for every question I get asked. I wish I wasn't embarrassed of his bandana and could parade him around confidently without a care in the world about who was looking. I don't have all the answers. I still get embarrassed.

But I do it, anyway. 
I take my family in public, anyway.
We color code his bandana in an effort to blend, and we go for it, anyway.

Embarrassed? Sure.  
Scared? A bit. 
Hurtful? At times.
Protective? Absolutely.

So why do we leave the safety of Boyce Lane?

Because I am a work in progress and people are too. Disability will never be understood if we keep hiding. So we keep trying to answer 2 year olds when they ask great questions. We expose ourselves and our children to the elements so we can all be better because of it. 

And the desire to share Jayden with the world comes from the beauty behind the drool.  The more frequently people see differences, the less different we all become. 

I want the world to see what I see when I look at him. 

A crooked smile, bright eyed, masterpiece.


Proud Mama

We’ve been here before.
It’s an all too familiar place.
It just didn’t happen so quickly the last time.


The death sentence of Sanfilippo.  

The last six months have been rough for Brooklyn.  
The last six months have been difficult to watch for everyone that loves her.

One year ago, we were getting reports from the doctors in Minnesota that Brooklyn was at 31 months, developmentally.  She was talking, singing, playing, matching, and knew her colors.  Although she was still far behind her typical peers, she was above average for Sanfilippo.  The doctors also said when kids like her begin regressing, it is anything but gradual.  

We were sad and proud at the same time.

Jayden didn’t have as much to lose and when he did, it was pretty gradual.  A few things would disappear at a time, then one would reemerge for a season, then flicker out until it was gone.  His last two phrases were, “My Neon” [we have a Dodge Neon] and “My Dad”.  We haven’t heard a word from Jayden in years.

This summer we noticed an increase in Brooklyn’s aggression and restless sleep.  She has violent screams as she is trying to go to bed [see video].  There seems to be a correlation between these nights and regression.  I’m no doctor, but I have seen this pattern in both my kids.  

It’s like the hair in your shower drain, mixed with the slime of your soap and dead skin cells. The more of that gross-ness that builds up, the harder it is for water to flow through your drain. Eventually, your drain gets completely plugged and quits working.  And with Sanfilippo, there’s no tool yet to clean it out. The connections in their brains get polluted and stop working. 

So when it came time for Brooklyn’s school placement this fall, she was too “high” for Laremont  (Jayden’s school for kids with severe and profound disabilities) but too “low” for a typical Kindergarten class.  So, we put her in a wonderful classroom designed to work primarily with students who have Autism.  Her teacher was amazing.  And the staff worked really hard to get her transitioned.  By December parent teacher conferences, though, it was clear that she was miles behind her peers in the classroom.  

They were spelling, she was tearing paper.
They were lining up for the bathroom, she was getting her diaper changed.
They were matching colors and sorting blocks, while she was coloring her hands and eating blocks.

So, at my request, we had a team from Laremont come in and observe her.  

Would now be the right time for her to go to Laremont?

There are a lot of things we could be sad about.  
A lot of things we ARE sad about.

Brooklyn has worked so hard and in a few short months, years of therapy and hard work are gone.  Laremont is the end for us. There is nothing lower to go to other than hospice.   In the beginning, we were foolish to believe that Laremont would be an option for our kids when they got to High School, not Kindergarten. 

Silly us.

On her last day of school this December, I got dressed for her IEP meeting. (This is the meeting where the district and teachers come together to talk about her goals and placement.)  

I made carmel popcorn.
I put on my converse. 
I mean, how can you be sad wearing converse, eating popcorn?

I grabbed a stack of Love Does books for each person that has worked with Brooklyn and headed to the meeting.  It was brief.  We all knew.  We celebrated her. We laughed about her pulling Jayden around at school now that they will be together.  We ate popcorn. 

As I was leaving, I thanked everyone for how much they loved my sweet girl.  They all lingered a bit longer than a normal IEP meeting.  It was like they were saying good-bye to her in those few minutes. As I was leaving, I hugged her teacher, and that’s when it happened.  Her teacher was trying to hold back tears.  

Listen, this isn’t my first rodeo.  I have been to more of these meetings than I can count.  And, they are all about regression.  They are emotional.  Even for teachers.

I got in my car and called Justin to give him the news that Brooklyn would be going to Laremont starting January 5.  I started to cry.  My tears quickly shifted from tears of sadness to tears of joy.  

I was so proud of my sweet B.
I AM so proud of my little girl.

She continues to impact the people around her.  You can’t help but love her. She sumo-walks into a room, big blonde hair,  beautiful blue eyes, and an even bigger smile.  Christ’s light shines through her song.  Her spirit is contagious and she makes you want to linger a little bit longer.  She continues to leave a legacy of love in the hearts of the people that take the time to be with her.  

And, that makes me one proud mama.