Life With Down Syndrome

On August 18, 2013, we received an incredible gift. That gift was our 4th child, Liam, who was born rocking an extra chromosome!

Down syndrome is like a club I never imagined I would ever want to join, but now that I'm here, I never want to leave.  Liam changed us.  He brought our family closer, strengthened friendships, and brought incredible people into our lives.  He is full of love, beauty, innocence, and joy!

Liam and I are on a mission to show the world that Down syndrome is NOTHING to fear!

Click on the following links to learn more and scroll down to read his birth story!

I Didn't Know I Wanted A Child With Down Syndrome...Until I Had One

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Nothing To Fear!

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Sorry?  We're Not Sorry!

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Aim to Inspire

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31 Facts Everyone Should Know About Down Syndrome Paired with 31 Pictures Guaranteed to Make You Smile

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Why I Fought To Breastfeed My Baby Who Has Down Syndrome

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Liam, on the big screen, in Times Square

National Down Syndrome Society (NDSS) 2015 Times Square Video

This Beautiful Boy

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 Holland Tour Guide

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Liam Takes Over (Life with Down Syndrome)

 He killed it with the cuteness today! So many cute shots for a Valentine's Day card and his 17 month blog post. The Valentine's Day bow tie from @lollyludesigns was perfect!

Since That Post (The One That Went Viral)

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 They Said WHAT?!?

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LIAM'S BIRTH STORY

Liam's birth story is nothing like I imagined it would be.  It was the day that changed our lives forever.

Although very much unexpected, it is HIS story, and it's every bit as special as Dylan, Lexie, and Lily's births.  I am proud to be able to share it!  I experience so many emotions when I think about the day we met Liam.   The hours after his birth are a blur, and there are so many things I wish we could go back and relive.

When I think about Liam, only one word comes to mind now: Blessed. 

It all began on the day I reached 37 weeks. 

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I was thrilled to be full term, and so excited to meet our baby!  Although I didn't know it at the time, it would be my last weekly pregnancy update.

That afternoon, my mom and I had plans to go to Costco and WalMart to stock up on food and supplies before the baby arrived.  When I picked her up from work, I joked about our shopping trip putting me into labor.  Little did I know that would be true!

While we were out, I was having very strong Braxton Hick's contractions.  By the time we finished shopping, there were slightly painful ones mixed in.  That evening, I told Grant that I was pretty sure that I was in the early stage of labor. 

The next day was Saturday, so we all slept in.  Sure enough, when I woke up, the contractions started again.  I called my parents around noon to give them the warning that I would probably be going to the hospital within the next 24 hours.

That evening, we had plans to go to our friend's house for dinner.  Grant thought I was completely crazy for still wanting to go, considering the fact that I had been having regular contractions for almost 24 hours.

We went, and during an absolutely delicious dinner, the need to actually time the contractions hit me.  I downloaded the app while we were eating, and I began timing the contractions.

After dinner, we all sat down and just spent the evening talking.  My contractions were coming every 5-10 minutes.  Every time I had one, everybody stared at me in silence until it passed.  I finally looked at Grant and told him that we should probably go home, put the kids to bed, and get things ready to go to the hospital.

Once the kids were in bed, we sat down on the couch and watched an episode of "Cheers."  I was still having contractions, but they had slowed down a bit.  We headed to bed, confused and frustrated.  I only slept about 2 hours, then got out of bed, in the middle of the night.

I was feeling very restless and the contractions were coming every 5-10 minutes again.  I had coffee, cleaned the house, talked to a few friends an family members, fixed my hair and put on makeup, and paced the house. During all that, I had several signs that the baby would be born soon.

 Around 6 AM, Grant noticed the bed was empty and ran to check on me.  I told him that I thought we would be heading to the hospital soon.  He suggested that we left then, but I was still in denial and thought they would send me home if I went to the hospital.

Sometime between 7-8, I realized that this was it. I called my parents to tell them that they should come over soon, then I called my OB office, and waited for a call back from the on-call doctor.  When the doctor called back and told me to come in, I was so relieved.  I was also thrilled that my favorite doctor was going to be the one to deliver my baby!

My parents arrived, we kissed the kids goodbye, and headed to the hospital.  

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Let it be known that GRANT WAS RIGHT...AGAIN!  We should have left at 6 AM.

By the time we got in the car, I was in full-blown, active, PAINFUL labor. The contractions were coming at lightning speed, and once again, I felt like I was going to deliver in the car.  It was exactly like our experience driving to the hospital when I was in labor with Lily. I was gripping my seat the entire time. 

We reached the hospital just before 9 AM, and we slowly made our way to labor and delivery.  Our nurse, Crissy, met us in the hallway, and Dr. Kapnadak waved to us from the desk. Crissy took us to triage, because I was only 37 weeks, and they wanted to make sure it was actual labor.   Oh, I knew it was!

The only other time I had to go to triage first was with Dylan, who was born preterm.  I gave a urine sample, got changed into the hospital gown, answered all the questions, got hooked up to the monitor, and waited for my doctor. Meanwhile, Grant got to hear our baby's heartbeat for the very first time!  My doctor came in, checked me, and announced that I was over 5 cm and completely effaced!  This was it!

Everything happened really fast after that.  We walked to the delivery room, and the nurse hooked me up to the monitors.  My IV was put in, and soon after, I got the epidural.  Grant got our bags from the car while I was having it put in.  This was a much more pleasant experience than my previous experiences with the epidural!

Once the pain medication kicked in, Grant and I were able to relax, and tell everybody that it would be our baby's birthday!  He/She would be sharing a birthday with my sister, Pam!  I was still in disbelief, but so excited to meet our baby!

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I spent the next two hours quietly progressing.  Whenever I had to lay on my back to get checked, my blood pressure would plummet, causing me to nearly pass out and feel really nauseous.  Medication helped somewhat, but I just avoided my back!

Grant and I kept checking the heart rate and putting in our guesses for the gender, attempted to choose a boy name, and visited with my sister, Kelly, who showed up near the end of my labor.

Finally the doctor came in for another check, and said that I was fully dilated and ready to go! I can't remember the exact time, but I think it was sometime after 1:00.   My sister went to the waiting room, and they quickly got the bed ready for delivery. Surprisingly, my water never broke!

I remember thinking how surreal it felt and feeling like it was all going by too quickly.

Everything that happened from that point on was a blur.

Pushing felt very difficult this time.  My legs were heavier than they had ever been from the epidural, so I couldn't even hold on to them.  I struggled with feeling like I was going to pass out or fall off the bed.  I was really uncomfortable, but I pushed and pushed and pushed.

I really only pushed a few times, but it felt like a long time!  The doctor explained that she hated to do an Episiotomy unless absolutely necessary, and this time it was.  He almost came out at the first push, but his head was just too big.  After a few pushes, the baby went into distress, and the doctor told me that I HAD to push him out with one more push, or else she would have to use the vacuum.  I had that done with Dylan and tore very bad, so I was motivated to push him out on my own!

I pushed with all my might, and our sweet baby entered the world!

Our baby let out a cry, and with it, I began to cry.  Somebody, although I'm not sure if it was Grant or the doctor or the nurse, said, "It's a BOY!!!  I tried to sit up to catch a glimpse of him.  The doctor commented on just how short his cord was, then told Grant that she preferred to cut the cord so he didn't slip and accidentally cut me.  We all laughed about that.

All I wanted for this delivery was for Grant to be able to cut the cord and for me to hold my baby right after birth.  That has never happened for us!  I was bummed that Grant wasn't able to cut the cord, but still hopeful that I could hold my baby.

I remember the doctor commenting again about how short his cord was, and staring down, looking very concerned.  Now I know why.

I reached out to grab my baby when the doctor handed him over to our nurse.  The blanket was already on my chest, all ready for me to hold him for the first time.  Disappointment and worry kicked in as the nurse spun on her heel and handed him to another nurse.

After that, the room went completely silent.  No baby cries, no talking, just absolute silence.

I remember asking if he was okay, and receiving no immediate answer.  The doctor wouldn't even meet my eyes, which was very strange.  I believe our nurse told us that he got fluid in his lungs during his birth, and that he just needed a little help breathing. She kept squeezing my hand and patting my arm.

Minutes went by, and more doctors entered the room.  I repeatedly asked if everything was okay, because our son was completely silent, and nobody answered.  I just remember a group of doctors and nurses surrounding his bassinet and speaking very quietly.

By that point, I knew something was wrong.

My doctor finished up, said congratulations, flashed us a quick smile, and left the room.  Still no baby cries.

Eventually, he began crying again, and we breathed a huge sigh of relief.  Doctors and nurses began to leave the room.  The remaining nurse brought him over and handed him to me, as if nothing had happened, then left the room, so we could bond with our new son.

After so many agonizing minutes, we were thrilled to have him in our arms.


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Nine months ago, we were wondering if our baby was going to be a boy or a girl and wondering what we were going to name him/her.  We had no idea our lives were about to change in more ways than we expected.

I shared the first part of Liam's birth story shortly after he was born. I put off sharing the ending, because it was the most difficult part to write.  Oh, I wrote it.  I just couldn't bring myself to hit the publish button.  The weeks turned into months, and here we are.

As difficult as it was to write, Liam's story deserves to be told.

My recollection of the events that occurred after Liam's birth is foggy.  I remember things that happened, things that were said, and the way I felt, but not necessarily in order. The hours after his birth were filled with shock, grief, worry, and fear.

We went into the hospital expecting to meet the perfectly healthy baby we saw in all the ultrasounds.   What actually happened was enough to rock anyone's world. 

I found out after Liam's birth that all my feelings that day were completely normal.  I'm not proud of the way I felt at times, but my thoughts and feelings were identical to many I talked to who shared a similar experience.  Thoughts went through my mind that no mother should ever feel. The truth is, it was a grieving process. I grieved the loss of the baby I thought we were getting, and had to to go through the process of grief, acceptance, and healing. 

What I'm about to share is going to be raw, emotional, and completely honest, but the ending is beautiful. 

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I left off with our son being rushed away and surrounded by nurses and doctors.  We weren't allowed to see our baby, and everyone ignored our questions.  Finally, he cried, the room cleared, and a nurse handed him to me.

The room was completely empty and the delivery lights were still shining brightly on the bed.  I took my son from the nurse, and held him out so Grant and I could finally see him.  His eyes were wide open and they locked on mine.  As soon as our eyes met, my heart plummeted.

Those eyes were so much different than my other newborns.  I knew.  I just knew, deep in my heart, that he wasn't the baby we expected. I actually turned to ask the nurse if he had Down Syndrome, and nobody was there.  I stared at him and every expectation I had for him and our future shattered.

I started to cry while I was holding him.  I turned to Grant, sobbing, "He has Down Syndrome."  I remember the shock on Grant's face and him asking me how I knew.  All I could say was, "He does. He just does."

We were alone in that room for what felt like an eternity.  Grief enveloped me as I hugged my baby, and I couldn't stop the tears from falling.  Nobody came in to check on us.  I remember feeling so alone and lost.

After what felt like hours, a doctor came into the room, pulled over a chair, and sat down. That's never a good sign. He didn't have to say a word. I already knew.

He struggled to put into words that some of the doctors suspected our baby had a genetic disorder.  I remember Grant asking, "Do you mean Down Syndrome?"  I remember the doctor nodding his head, then assuring us that all our questions would be answered. As if that wasn't enough to process, he told us that 3 out of every 5 babies born with Down Syndrome have a major heart defect and that he needed to take him to the cardiologist immediately.  With that, our son was whisked away yet again, and we were truly alone.

That's when I lost it.  Completely, truly lost it.  I sobbed, uncontrollably, while Grant tried to reassure me that it would all be okay.  I think I kept repeating the same words.  "It's not okay. I can't do this. I don't want to do this."  I remember asking God why he did this to our beautiful baby.

I remember thinking that I didn't want any of this.  I wanted the perfect, healthy baby I expected. Instead, we were faced with uncertainty.  I was terrified we were going to lose our son or that he was going to need multiple surgeries, and I was terrified of how much our lives were going to change.  I knew nothing would ever be the same again.

It felt like a nightmare.  I kept thinking I was going to wake up at any moment, roll over, tell Grant all about it, and laugh at how much I worried about things. Everything that was happening was completely surreal.

Eventually, our son was brought back to us. Despite the grief, I knew I had a baby to take care of.  I tried to nurse him.  He would latch on, suck weakly for a few seconds,  then turn his head away. On top of that, we still hadn't decided on his name.  I finally told Grant to pick his name. Grant proudly walked over the the board, and wrote down his son's name.

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We realized we didn't have a single picture of our new baby boy.  We were never given the chance to pick up the camera. The first picture taken of Liam was when he was in my arms for the second time.

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All I wanted to do was hide out in our hospital room and hide our baby from the world. I didn't want to break the news to our family and friends.  Unfortunately, my sister was in the waiting room, and family and friends were on their way.  Grant brought up the fact that my sister had been waiting a  long time and that we had to go get her.

Kelly came back to the room with Grant, and she was so excited to meet her nephew.  We were still processing the news, so we didn't say anything.  She could tell I had been crying, and asked if I was okay. I just told her I was tired and emotional.  She was so happy to be there during my labor and was thrilled she was the first person to meet Liam. She held him and fussed over him, and didn't even notice anything was wrong.

Before leaving, she snapped a few pictures for us.  I'm so glad she was there and so glad we have these pictures.  A picture is worth a thousand words and these pictures tell quite a story.

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After Kelly left, a nurse whisked Liam away, yet again, for more testing.  Once again, we were left in complete silence, and nobody came in to talk to us.  My legs were still numb, so I was trapped in bed.  I couldn't move, couldn't think, and I was emotionally and physically exhausted.  I felt completely numb and completely drained.

We called my parents, who were on their way with our kids. We didn't say anything to them about what was going on.  Grant called his mom, and broke the news to her.  I cried in the background as he spoke.  At that point, I sent the most difficult message I ever had to write to some of my closest friends.

I was still crying when my dear friend, Steph, knocked on the door.  As soon as she walked into the room, she saw the pain on my face, and she started to cry.  She arrived at the hospital before reading my message, so she had no idea.

As she hugged me, I explained what was going on.  She quickly pulled herself together and then pulled us together.  Steph was the moral support we needed so badly.  She put such a positive spin on everything and helped us so much. She started laughing and said, "I'm more surprised that it's a boy than I am that he has Down Syndrome!"  I am so thankful she was there for us.  She saved us from falling deeper into depression. (Thanks, Steph.  I know you're reading and I hope you know just how much you mean to me!)

We decided that Grant and Steph were going to take the kids out of the room as soon as they arrived so I could tell my parents everything. As soon as my parents walked into the room, we greeted the kids, and told them Grant was going to take them to the cafeteria for a treat. My parents immediately knew something was going on, especially since the baby wasn't in the room with us. The look on my mom's face was one of pure terror.  As soon as the door closed behind them, my face crumpled.

I remember my mom's voice, filled with dread, "What's going on?"  I remember trying to get the words out through my tears, "They think he has Down Syndrome." I remember her dropping everything she was carrying to the ground, crying out, "NO!" and covering her mouth with her hand.

I think she hugged me while we cried, I think they asked questions, but I truly can't remember anything after her reaction. That is, until my awesome dad, with his amazing positive attitude, said, "Okay, where's my grandson? I want to meet him!"

Grant, Steph, and the kids returned, so I called the nurses station to ask for my son back.  Steph pulled out her camera and began capturing all the special moments while we waited.  We gave the kids their big sibling gifts, I tried to eat something but ended up feeding Lily instead, the kids felt my empty belly, and I showed them pictures of their new sibling.  Dylan, Lexie, and Lily were the distraction we needed. Their happiness and excitement were contagious.

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Finally, the nurse brought Liam back to us.

I didn't even see any of the pictures until just a few months ago, and I cried as I flipped through them for the first time. The pain on my face is evident in the first few pictures, but my mindset began to change as I watched Dylan, Lexie, and Lily meet their baby brother.  They loved him just as he was, with all their might. He was perfect in their eyes.

Steph captured these precious moments perfectly, so I'll let the pictures tell the story.

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I was so afraid that our family and friends were going to act differently around him. I was afraid that all they would notice was his slanted eyes or the extra skin on the back of his neck.  Our family and friends loved him just as they loved Dylan, Lexie, and Lily.  The love and support from them was amazing, and watching them love our special boy brought tears to my eyes.

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Everybody headed home, and Liam was taken away again.  Once again, the sadness hit when Liam was out of the room.  I remember my two amazing nurses coming in before the shift change to say goodbye.  They both wrapped their arms around me and assured me everything would be okay.  They were the first hospital personnel to even acknowledge our concerns.

We began the difficult task of telling our family and friends about Liam.  Within a half hour of telling my mom group on Facebook, I received a message from another woman that had gone through the same thing.  She was the one who gave us the most information, and I am so grateful for that.  Nobody at the hospital would give us any information. Doctors, nurses, and the lactation consultant came and went, but I can't remember anything they said. Mostly, they said nothing. Apparently, they had to treat him like a typical baby until the blood test confirmed the diagnosis.

It was nearly 6:00 before I was able to get out of bed.  After moving around for a bit, Grant and the nurse convinced me that I had to eat something.  We were eventually moved out of the delivery room and into a recovery room.

I think we had visitors that night, but honestly, we had so many visitors that the visits blend together.  The love and support was overwhelming and much needed.

Grant and I finally attempted to go to bed.  It was the most emotionally and physically draining day.  Liam had been taken out of the room for MORE testing and evaluation. My arms were empty, my heart was heavy, and I cried myself to sleep.

In the middle of the night, the nurse quietly entered the room with Liam.  She cheerfully announced that he had another bath and was hungry. She checked on me and handed Liam over.

The room was dim and silent.  I held Liam in front of me and studied my baby boy. I breathed in his amazing newborn smell and touched his soft cheeks and lips. His eyes opened and locked on mine.  It was almost as if he was begging to be wanted and loved.

In that moment, he took my breath away.

The tears fell again, but this time, they fell because I was so ashamed at how I felt after he was born. I stared at him and told him that I would love and protect him with all my might. I hugged him against me and kissed the top of his head.  He wrapped his fingers around mine and I fell head over heels in love with my beautiful boy.

The rest of our hospital stay was a blur. I woke up early the following morning and my wonderful doctor came in as I was walking around.  She gave me a huge hug and apologized for not discovering this during my pregnancy.  We received the great news that his heart was perfectly healthy and his thyroid was perfectly normal.  We had a lot of visitors that day, but I can't seem to find those pictures.  We also had our courtesy Welcome Baby Dinner!

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By the next day, Grant and I were more than ready to take our baby home.  Nobody helped us or gave us any information, and it was very frustrating!

I know Liam's birth wasn't typical, but I feel like we were robbed of having a somewhat normal experience.  I felt angry that we were unable to bond with our baby.  We didn't get to hold him or see him for the first half hour of his life, then he spent most of his first day away from us.  I honestly feel like the situation would have been less painful if we were just given a chance to hold him for a few seconds after he was born.  I understand their concerns and why they needed to examine him, but I really do feel like the bonding process was very delayed.  My only other regret is that we were unable to take any pictures of him after he was born.

As I was packing up our things to leave the hospital, Liam napped in the sunlight.  I remember turning around and catching a glimpse of him. His beauty captivated me.  He looked so perfect and angelic, and I was overcome with the fierce urge to love and protect him.

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My doctor discharged me and we waited impatiently for Liam to get discharged. We couldn't wait to take him home, where he belonged!

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Finally, the nurse came in with the paperwork and removed the security devices.  We were free to put this behind us and move on!

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As I was wheeled out of the hospital, I wrapped my arms protectively around Liam's carseat.  We ended up in an elevator full of nuns, who surrounded us and prayed over him. It was a very positive end to our hospital stay.

We arrived home to a decorated house, food, gifts, and 3 very excited kids!  We were thrilled to be home with our newest love!

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Liam's birth story was not an easy one to tell.  There are quite a few things I wish I could change, but I would never want to change him.  I honestly believe Grant and I were meant to receive such a special blessing. Even if we had known during my pregnancy, it wouldn't have changed anything.

Dylan, Lexie, and Lily's births were so special. Liam's birth was special, too. I remember the overwhelming feeling of joy when I met Dylan, Lexie, and Lily for the first time, but no matter how hard I try, I can't remember looking into their eyes for the first time.

The moment Liam's eyes met mine is seared into my mind forever.  There are times when I close my eyes and the image is so vivid it makes me gasp. There are times when I try to relive the moment, and I can.  It's just his face, illuminated by the only light in the room, and those big eyes staring into mine. That moment is so beautiful now. At the time, I failed to see his beauty. Now, his beauty is all I can see.

Liam changed our lives in so many ways.  Liam challenged us to be better parents. He brought our family and friends closer.  His birth brought so many amazing people into my life; people I never would have met if he didn't have Down Syndrome. Liam made our lives better.

Every day, I thank God for giving Liam to me.  He is a true gift and I am honored to be his mom. I wake up to his incredible smile every morning.  He is joyful, determined, beautiful, captivating, and absolutely perfect.  My love for this beautiful boy is immeasurable.

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5 comments:

  1. This was the most beautiful birth story that I've ever read. I have tears over here. Tears of joy. He's beautiful. :) Thank you for sharing.

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  2. Stefanie... I just found you because you commented on my blog (beyond the curls). This is the sweetest story. You wrote that so beautifully, and I can feel your emotions... You have such a beautiful family! So happy I found you. :) Have a great weekend!

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  3. When I first looked at some of the pictures of Liam I couldn't even tell he had down syndome. He looks like such a happy and healthy little man to me :) All your children are beautiful. I know plenty of children with down syndome and non of seem to have such a loving family as yours looks. Liam has three big protectors to help him go through life. Thank you for sharing your story and I hope more mothers and fathers look past their childrens flaws and focus on everything beautiful in them like you both have done with Liam. :)

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  4. What a beautiful story full of love and honesty. It is obvious you were hand picked by God to be Liam's mommy.

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  5. Liam's birth is a beautiful story. You are an amazing mom and I love how raw your emotions are in this. I hate when people sugar coat it. I love the realness in this. Thank you so much for sharing this. Liam is handsome and definitely a blessing.

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Thank you for reading! XOXO