I Wish I Knew Then, What I Know Now

Whether you have a prenatal diagnosis or a diagnosis at birth, hearing your baby has Down Syndrome is devastating. For us, it was a surprise just minutes after Colton was born. Hunter and I will both tell you that was the hardest day of our lives. We were shocked, scared, worried, and sad. I felt like I had been hit by a bus...and I might never be whole again.

What I didn't know was that not only would I be whole again, but I'd be happier than ever before. God blessed me with a little boy with Down Syndrome...and oh how he has changed my life for the better! I am one of the luckiest moms on the planet, and I was inducted into a club of moms called "The Lucky Few." God chose me to be Colton's Mama...and there ain't nothing down about it.



Colton still lets me rock him to sleep at night...so I do. Not a night goes by that I don't tear up thinking about how lucky I am to be his mommy...how thankful I am that God chose me...how beautiful Down Syndrome is...how beautiful my little boy is. I LOVE to share Colton with people (whether in person or through social media) because I want them to experience how amazing he is. He makes me laugh and smile every single day. If you watch my Instagram stories of him (Carriescott22), you hear me laughing in the background in almost all of them. He is SO funny. His big brother Weston always tells me, "Mom, Colton is so funny. He always makes me laugh." And it's true...nobody makes Weston laugh like Colton. A big, belly laugh. We get such a kick out of him. It's so fun to just watch him play and learn and mimic us. He makes us SO proud! I promise you that if you were able to spend 20 minutes with Colton, your life would be blessed. He just has a way of drawing you in with that killer smile.





And the way he gets SO excited about small things. This is his "Wow" face...



So when I see something like the statistics below...I'm instantly brought to tears.



How could you not want my Colton? Is his life not valuable?

The United States is doing a much better job than most countries, however, 67%? That's still really high. There are so many families that decided they weren't up for the challenge. And yes, I say "challenge" because it is challenging to raise a child with DS. But let's be honest, it's challenging to raise children in general...just because your child is "typical" doesn't mean they are free from therapy services or medical complications. Colton does have a few more doctor's appointments than my other kids. Colton does have to get therapy services to help him learn to do most things. But isn't he worth it? He is to me.

I do know that when you read articles about children with DS, it can be scary and overwhelming. There are a lot of health concerns in the beginning. The children do have low tone so it takes longer to learn to sit and crawl and walk. They can struggle with eating or sucking. They do learn at a slower pace. But DS is not the doom and gloom that people think. Instead of just reading articles, go spend some time with children and adults with DS and see if your perspective changes.

When we found out that Colton had DS, everyone cried for us. Everyone felt sorry for us. I felt sorry for us. And the reason was because I had never been around someone with DS. I had absolutely no awareness. I share this because there's still work to be done to raise awareness for DS. Because of my blog, I've had multiple people reach out to me because someone they know was just given a DS diagnosis and they thought I could help. That makes me SO happy! I would love to walk someone through this journey and tell them that it's gonna be ok! You can do this! That's why I share our story. That's why I share my Colton. So I can help others going through the same thing...and to show everyone else that a DS diagnosis isn't so bad.

I pray that I can use Colton's life to help others. I believe that Colton is a "warrior for Jesus." I believe that God sends these special people into the world to make a difference. So I will continue to share Colton and our journey with the world. And over time, maybe that 67% will begin to decrease.

If I had know then, what I know now, there wouldn't have been tears the day Colton was born. We would have celebrated his birth and that extra chromosome. We would've known how lucky we were to get the opportunity to raise a child with DS. I hope Colton has blessed your life just by following us. He sure is something special...and I can't imagine life without my homie with an extra chromie!!!!

Growing Our Family

This is a picture of us, 8 years ago. We had been married for a little over 3 years and we decided it was time to start growing our family. Our dream was to have two children, two years apart. We assumed having children would be easy. It seemed like people got pregnant all of the time and popped out healthy babies. Looking back now, we were young and naïve. We had no idea the journey we were about to embark on. A journey that still wouldn't be finished, 8 years later...

I had never had any female issues that made me think I wouldn't be able to get pregnant. So after 6 months of negative pregnancy tests, I decided to go see my doctor. They referred me to a Fertility Specialist to have things checked out and I left the office in tears. Fertility Specialist? Me? I just never saw that coming. So, I made the appointment and went to an amazing doctor who did a full workup on me. He didn't have any answers for me as to why I wasn't getting pregnant. He did suggest we try Clomid, a fertility drug, to help me in the process. I did 5 rounds of Clomid. Wow, that was quite the experience! It made me feel like I was going through Menopause. I've never had hot flashes like that in my entire life! The first four rounds were unsuccessful, but after the 5th round, I got my first positive pregnancy test. I immediately went to the Fertility Specialist for bloodwork to monitor my hormone levels. We were very excited! Unfortunately, at 5 1/2 weeks pregnant, I began showing signs of a miscarriage. I lost the baby on a weekend getaway to the lake house. I remember it being very painful and I remembering sobbing the entire time it happened. I was pretty devastated.

A few weeks later, I was feeling much better. We had a bunch of friends over to our house for our Annual Crawfish Boil. A friend of mine who had struggled with fertility suggested I try Acupuncture. She recommended a lady in town that helped her conceive her children. I never thought I'd be open to something like that, but for some reason, I decided to be brave and give it a shot. Why not?

Hunter was very supportive and said to go try it out. I made my first appointment and I was very nervous. I didn't really know what to expect. She took me to a room that looked much like a doctor's office room. She had me lie on my back on a medical bed. She told me that she would insert tiny needles into various pressure points on my body. I was concerned they might hurt, but they really didn't. A few places she put them were more uncomfortable than others, but after the initial sting, I didn't notice any pain. I had needles in my forehead, ears, arms, hands, fingers, knees, ankles, toes, and a lot on my stomach. Acupuncture is meant to improve blood flow throughout the body...and in terms of pregnancy, it helps to balance hormone levels. When your hormone levels are balanced, it's easier for the body to get pregnant. She also took a little wooden box and put burning incense inside of it. She then put the box on my stomach. The heat draws the blood toward the uterus. She turned off the lights and left me on the bed listening to soft, Chinese music. I laid there about 30 minutes or so until she came back. She always would put a small bell in my right hand to ring for her if I ever needed anything. The needles aren't supposed to hurt, so if they do hurt, you just call her in and she'll adjust them or remove them. During that time, you can't move. I tried to scratch my face one time and it hurt! I learned my lesson...just don't move!

I would spend that time in prayer or just thinking to myself. Sometimes I'd fall asleep after a long day of teaching. She recommended I go twice a week in the beginning. I began to look forward to the quiet time...no distractions...just me and my thoughts. Sometimes, I'd be so ready for her to come back in and remove the needles and other times, the time passed by very quickly. By the end of the session, I felt like my body was numb and I just wanted to stand up and stretch. Somedays, she'd do the needles on the front of my body and then after that was over, she'd have me flip to my stomach and she'd do some in my lower back to help my kidneys. Apparently, the Chinese believe that kidneys and fertility are linked. The kidneys can help improve the quality of the egg. I continued doing acupuncture for several months. I also took some Chinese Herbs she suggested called "Dong Quai." I had to take 5 or 6 pills, three times a day. They were supposed to help with balancing hormones, too. I started doing acupuncture twice a week and then decided to slow down to once a week. It can be very expensive...approximately $80-$90 per session. I finally decided to take a break for a few months to give my body a rest. My friend suggested I try to go twice a month, one right before ovulation and one right after ovulation. So, in November of 2011, I did that very thing and that was the month that I got pregnant with Weston, my first son.

My first pregnancy was amazing! I didn't experience much morning sickness. I enjoyed every stage of pregnancy because I was just SO happy to be pregnant...and STAY pregnant. We found out Weston was a boy at our big ultrasound and did a gender reveal party around 20 weeks. We were on cloud 9. My water broke at 39 weeks pregnant at midnight. I wasn't having contractions when I got to the hospital so they admitted me and waited until morning to start Pitocin. I labored most of the day (with an epidural...YES!) and gave birth to Weston at 5:04 pm. It was everything I hoped it would be and more.



Life was great as a family of three! We enjoyed Weston SO much. He was all boy. He met all of his milestones like a champ. He was a very early walker and climber and was fearless. I'd walk into the room finding him standing on the coffee table. He kept us on our toes. When Weston was a little over 1, we decided it was time to start trying for baby number 2. Remember, we wanted 2 kids, 2 years apart. Unbeknownst to us...things wouldn't go as easy as planned.

A few months before Weston's 2nd birthday, I found out I was pregnant. We were SO excited because it didn't require fertility drugs or acupuncture to help. Around 8-9 weeks, I was beginning to sport a little pooch and we went to our very first ultrasound. The unthinkable happened...the baby did not have a heartbeat. It hurt SO bad to see our little jellybean, but to see nothing beating in his/her chest. It never feels good to leave your OB's office in tears. I had to schedule a D&C to have this baby removed from my body. I was heartbroken and scared. I went to the outpatient surgery center the morning after Weston's 2nd birthday party for my procedure. I had tears in my eyes as my husband said goodbye to me and they rolled me off to surgery. My OB held my hand and told me that everything would be just fine. And it was...

As soon as we were cleared to start trying again, we did. It didn't take long for me to get pregnant again. A positive pregnancy test can be very exciting...except when you've been through what we've been through. With it comes worry... This pregnancy made it until 7 1/2 weeks. I started having some complications at home, so I scheduled a doctor's appointment ASAP. My doctor did an ultrasound and we found that I had a Blighted Ovum. Basically, my body thought it was pregnant so the sac was growing, but there was nothing in the sac. It didn't fertilize properly. So technically, there never was a baby. But, I still had to pass it at home like a miscarriage, which didn't make it any less painful.

So here we were, 4 pregnancies later and only 1 baby. We were pretty sad and frustrated, but we knew how lucky we were to have Weston. If he was the only child we were meant to have, then we were fine! He was wonderful. When I would get sad about things, I'd just go love on my beautiful baby boy and I'd begin to feel better. However, we still felt like we were meant to have another child.

We decided to shift focus and begin to look for a new house. If we did have another baby, we'd be really crowded in the house we were currently living in...so why not start looking? After several months, we found a new house and the day we put our house on the market, it sold. It was meant to be! We moved into our new house and had all of this space, hoping our family would continue to grow.

6 weeks after we moved into our house, we found out we were pregnant again. I was a nervous wreck. And all I could do to get through every day was to pray. At 7 weeks, I started having some signs that things might not be going well and I immediately called my mom, sobbing. I told her, "Mom, I think I'm going to lose this one, too." She said, "No you're not, get down on your knees, let's pray!" She started praying over the phone that God would allow me to have another child and that this baby would make it. I went into my first appointment prepared for bad news. Hunter and I began to expect the pregnancies to end in miscarriage. But you know what...there was a heartbeat! And every appointment after that, there was a heartbeat. We had made it past the first trimester and things started to feel better. We decided to share our news and were so excited. We had another gender reveal party and found out we were having another little boy! My pregnancy was great! I didn't have any problems. At 37 weeks pregnant, I woke up in the night with painful contractions and knew it was time to go to the hospital. My in-laws came to stay with Weston and we were admitted at 4 am. I got an epidural (because that's how I roll) and I progressed very quickly. I only pushed a few times and Colton arrived at 8am. Such a smooth and easy delivery...I couldn't believe it happened in only 4 hours. We thought everything was ok. We had made it full term. But then my Mommy Intuition knew that something was wrong. The nurse checking Colton out was taking too long. Why haven't they brought me my baby yet? I said something to my doctor and she said she'd go check on things as soon as she was finished with me. She walked over to the nurse and they talked for a minute or two. Then, she came to my bedside and told me that he was showing 4 markers for Down Syndrome. Talk about a gut punch...a knife to the heart. How could this be? How did we make it 37 weeks and nobody picked up on this? Is she joking? Surely, I'm dreaming!

The joy was completely sucked from the room and I experienced the lowest moment of my life. I finally had a pregnancy that made it to full term...and then this? Are you kidding me, God? Why me? Why us? 3 miscarriages wasn't enough? We don't deserve this.

If you've read my blog in the past, I did a post on Colton's Birth Story. Our sweet baby boy was diagnosed with Down Syndrome at birth. On the day he was born, our world shattered. Life would never be the same. However, we were able to pick up the pieces and slowly put them back together. And today, we love that boy fiercely and are so thankful for him. He is such a blessing and he brings us so much joy. We are better people because we have a child with Down Syndrome.



Raising a child with Down Syndrome is challenging. There are so many learning curves. Lots of doctor's visits. Evaluations. Therapy Sessions. Applying for TEFRA (Medicaid). Our first year was very stressful and we were doing our best to figure things out and get Colton where he needed to be. Life was busy...but we were learning to accept this new life.

When Colton was 8 months old, I found out I was pregnant. This was NOT planned. I was terrified. I had a full plate and didn't think I could handle one more thing. But at 7 weeks, I hemorrhaged and my husband rushed me to the ER. I had to have an emergency D&C and I lost so much blood that I had to have a blood transfusion. I got 2 bags of blood over my hospital stay. I'm so thankful for an amazing doctor who took care of me, the same doctor who did my last D&C...who delivered both of my babies...and who told me that Colton had Down Syndrome. I've asked her before if I give her PTSD when she sees me because of all I've put her through, but she just smiles at me and laughs. She's the best!

I finally recovered from that procedure and life carried on. Colton was doing really well, but our schedule was getting pretty hectic. We were trying to squeeze in 7 hours of therapy a week (OT, PT, Speech) working around nap times, lunch times, pickup and drop off times for Weston...and he eventually was having to go for 3 hours straight of therapy in one day. Talk about hard on a 1 year old. Poor baby! We decided it was time to send Colton to school full time. In August 2017, Colton joined the Toddler class at his school. He would have to go 8-3 Monday thru Friday because of Medicaid policies. It broke my heart to give my baby away full time since I wasn't working, but I knew it was best for Colton. He needed to get his therapy and I needed a break. I was overwhelmed at home trying to give him all of the help he needed. I was trying to be an OT, PT, and Speech Therapist and I just couldn't handle the pressure. So...I sent him to school so that he could get what he needed during the day and when he came home, I could just be mom. He went to school like a champ, which made it easier on me. It was one of the best decisions we've made. He's doing so well!

So there we were, 2 kids, 3.5 years apart. Not exactly how we had planned it, but we were thankful for our two beautiful boys. I was ready to throw in the towel on having anymore children. That is until my "2 kids and done" husband decided we should have a third. What? Absolutely not. Not after what we've been through. 6 pregnancies is enough for this Mama. But he made some valid points about having another typical child for Weston and Colton. I wasn't so sure I was up for the challenge so I decided to give it to God. I told God that I couldn't handle anymore miscarriages or anymore children with Special Needs. I told him that if that was going to happen again, then please don't let me get pregnant. Just let me enjoy my two boys and move on. But if it was His will for us to have another baby, please let me get pregnant quickly (as I am approaching 35 and my chances of having a child with Special Needs increases even more). So I decided I wasn't going to decide and we'd just see what happens. 2 months later, we got a positive pregnancy test. We were shocked!

So here I am, pregnant for the 7th time. I am currently 34 weeks pregnant. This pregnancy hasn't gone as smooth as I would have liked for it to go, but I'm still pregnant and this baby was meant to be. Baby Boy Asher is due July 29th and I'm currently on bed rest because he decided to try to come at 31 weeks 4 days. I also have antibodies in my blood from my blood transfusion which has caused some worry, but so far my numbers have been staying low, so we should be just fine. We are hoping to make it to July 1st, which puts me at 36 weeks. He can come anytime after that. We can't wait for Asher to join our family and to end this chapter of our lives. We pray that Asher's birth will be positive and end with our little family of 5 sitting on a hospital bed, grinning from ear to ear. We hope he will be the cherry on top of our family sundae.

Growing our family hasn't been easy. 8 years, 7 pregnancies, 4 miscarriages, 2 D & C's, countless hours of acupuncture, and 1 Down Syndrome diagnosis. But I would do it all over again just to have my 3 little boys. They make everything I've been through worth it!

In 8 years, never once have we let this journey hurt our marriage. Instead of driving us apart, it only brought us closer together. My husband has been with me every step of the way. We are a team and we are the only two people who know exactly what the past 8 years have been like. We are stronger because of our struggles. We overcame many obstacles and never gave up. I share our story in hopes that somebody out there will feel encouraged. Life doesn't go as planned. Unexpected things happen every single day. But if you have a dream, go for it, no matter how many times you get knocked down. You never know how strong you are until you've hit rock bottom and strong is the only option.

We are done having children. I know some Mamas are sad when it's time to end that chapter of life and move on, but not me. I'm ready. I'm tired. I'm excited to enjoy my three boys and to watch them grow instead of my belly grow. Thank you, God, for these three beautiful gifts. Weston, Colton, and Asher wouldn't be here without all of the trials these last 8 years.

I'll end with a few lyrics that got me through my tough times...

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held.
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, Just be held.

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, Just be held

Colton's Progress, Age 2

Putting Colton in school full-time was the best decision we could have made for Colton. From the beginning of the school year, until now, Colton has grown leaps and bounds. However, the past 2-3 months, he has just completely blossomed. It has been so fun to watch! Watching Colton learn and retain information has been SO rewarding because you just never know how high functioning your child with Down Syndrome will be. It brings tears to my eyes to think about his progress. And boy is he proud of himself! That boy wants you to clap for him after he does something good. And this is the smile you get for cheering him on. Colton sure has a killer smile that absolutely melts my heart.



One of the things I am most excited about is Colton's language development. Not only is Colton showing us that he is understanding more language, but he is using sign language and speaking to communicate with us. I'm not sure if you know this or not, but some people with Down Syndrome are non-verbal. A lot of them learn sign language so that they do have a way to communicate, but that can still be very frustrating. Colton is showing us that he will not be non-verbal. Colton LOVES to talk! He has always been a babbler, but lately, words are starting to come out. Not all of his words are consistent. He might say a word one time, and then never again, but at least he said it. Colton has been blessed with the ability to hear. His ears are really good. In his life, he has only had 3 ear infections. They told me at birth that he would probably fail his hearing test, but he didn't. At his Audiology appointment last year (as a 1 year old), he passed in both ears. His ENT told me that she would put tubes in his ears during his tonsillectomy if there was fluid in the middle ear (which she thought was very likely), but guess what? No fluid! No tubes! She was shocked! Colton being able to hear is a huge BLESSING and that will definitely help him with his Speech. He is really starting to mimic words I say. So far, Colton can say several words consistently.

Ball, Da-Da, Baby, More, Up, Bath, Go, Jump, Swim, Day, Bye Bye, Boy, and sometimes Eat.

He attempts to say more words than that, but I wouldn't count them as mastered. His absolute favorite word is Ball. Colton will sit on the floor and throw a ball back and forth with you for hours if you let him. He will say ball when he wants you to throw it to him. Colton is doing very well with sign language. Some words he only says, some words he only signs, and some words he says and signs simultaneously. Here are a few words he definitely can sign:

All Done, Mama, Eat, More, Jump, Swing, Swim, Go, Brother, Outside, Baby, Day...

Another thing that Colton is doing really well is motions to songs. This makes me so happy! He loves the Wheels on the Bus; Head, Shoulders, Knees, and Toes; If you're Happy and you know it; Calling the Hogs; and The Itsy Bitsy Spider. As soon as I start singing the song, his arms get to moving. Colton definitely loves music and likes to jam out in the car with me to Disney Songs.

It took Colton quite a while to start mimicking me. I felt like I waved Hi and Bye to him for months and months before he would actually do it back to me, and then one day he did and blew me away. The same thing with blowing kisses, which he's a champ at, now. That's just how it is with Colton. We do things over and over and over and then one day, BOOM, he does it or says it. His response time is getting faster.

Another VERY exciting thing is that Colton is WALKING!!!!!! Colton took his first steps on March 21 (World Down Syndrome Day) at 26 months old! Of course, he waited to take those steps until Mom was in Colorado taking big brother snow skiing. I received a video from his therapists that morning and was in tears. We have WAITED for this day for so long. Colton made his PT work very hard to get him to walk. Colton is very stubborn, and I mean, VERY stubborn. As in, there are days he absolutely refuses to even put his feet on the ground to stand. He will hold his legs up in a sitting position when you try to get him to stand and refuse. It's so frustrating because he CAN stand if he wants to stand. He CAN walk, if he wants to walk. We spent an entire week in Florida with family after he had taken his first steps and do you think that boy would show anybody he could walk on his own? Absolutely not. That stinker!! Every time I'd let go of his hand, he'd sit down. What a turkey! But then when we came back from Florida, he decided vacation was over and he'd walk. And now he has just taken off. One of the hardest skills for Colton is standing up on his own in the middle of the room (without any furniture to help him). His PT has been working that skill over and over this past week and boy is he starting to get it. He finally is WANTING to walk. All we needed was a little intrinsic motivation. Colton is starting to get busier at home. The other day, Weston forgot to shut the bottom gate on the stairs and I found Colton on the 8th stair. My life is about to get busy...just in time for baby #3. LOL!



Colton's fine motor skills are also progressing because he grew three months in OT from one evaluation to the next. The only thing that Colton is really far behind in is his eating/self-feeding. Part of this is my fault because I'm a clean freak who doesn't like to give up control (I apologize right now to his therapists! I'm trying to get better!). This summer, I'm gonna have to strip him down and let him eat outside on the deck. Colton is actually a good eater. He likes a lot of different foods and will eat most anything I feed him. He just needs it to be cut into small bites. He likes spaghetti, pork chops, mashed potatoes, sweet potatoes, broccoli, yogurt, applesauce, oatmeal, chicken pot pie, macaroni and cheese, strawberries, bananas, nutri grain bars... The main problem Colton has is that he doesn't CHEW food. Like, not at all. He either smashes it on the roof of his mouth or just swallows it whole. I can't even give him goldfish or he will choke and I have to fish it out. He will put food in his mouth like Cheerios or Goldfish, but he doesn't know what to do with them. It's so weird! So...I'm really ready for Colton to learn to chew. I'd love to be able to throw some snacks on his tray (like Puffs, cereal, crackers, blueberries, yogurt melts) and he can manage them without choking. Oh, that would be so helpful with baby brother coming soon! But it's a work in progress and I'm just gonna have to be patient. Someday, he'll do it...when he wants to do it!



Colton is doing so well right now. His personality is so fun. He's just so sweet and happy! I absolutely love watching my boy grow and learn. It is so good for my soul. Colton is my little buddy and I'm so excited to get him out of his crib every morning and love on him. He gives the best cuddles. I'm proud of Colton and I'm so glad we found a school that is wonderful to him. I can't wait to watch him continue to grow and amaze me.

He Opened The Door...

When Colton was born and diagnosed, Hunter and I decided that we wouldn't tell Weston that Colton had Down Syndrome until he started asking questions. Weston was only 3.5 at the time and we knew he wouldn't understand. We didn't hide it from him, but we didn't sit down and specifically tell him. We wanted to wait until the time was right.

Over the past year, I could see the wheels turning in Weston's little head. He was making a few observations, especially when we were around other children Colton's age. He'd tell me that babies don't walk until they're 2. Then, he'd see a baby walking that was 1 and he'd say, "Mom, that's a walking 1 baby." He kept knocking on the door, but I never felt the time was right during those quick moments.

However, in January of this year, right after Colton's 2nd birthday, Weston opened the door...and I knew that it was time. I was in my bathroom getting ready for the day and he walked in and was playing with some toys. Nonchalantly, he said, "Mom, it's kinda weird that brother is 2 and he can't walk yet." Whoa! It took me by surprise. Tears welled up in my eyes and I got a lump in my throat. The conversation I'd been practicing in my head for over a year was about to take place. I took Weston to my bed and asked him to sit down by me. I said, "Weston, God made brother special. Colton was born with something called Down Syndrome. Can you say Down Syndrome?" And he did. He wanted to know what that was. I said, "There are these little things in our bodies called chromosomes. Mommy has 46. Daddy has 46. You have 46. But brother has 47. One extra chromosome. That extra chromosome makes things harder for brother. He will learn to walk and talk and play and do everything you do, but it will take him longer. And God gave him to our family because he knew we would help him." I could tell he was a little upset by the information I'd just given him and he finally said, "Mom, can we stop talking about this now?" I said, "Sure."

And that was it. Does Weston fully understand what Down Syndrome is? No. But every once in awhile he brings it up. His little mind thinks about it and he asks questions. Sometimes those questions come when we're driving in the car or when we're playing toys at home....I never know when they'll come, but I welcome them. He has asked me if the new baby will have Down Syndrome...and I tell him no, I don't think so.

I think that God made Weston knowing that he'd have a little brother with Special Needs. Weston is such a sweet, loving little boy. He adores Colton! He always says to me, "Mom, he looks so cute in those pajamas. Colton is the sweetest brother in the world." He's so patient with Colton, especially when Colton is messing with his toys. Instead of getting mad, he just grabs Colton under the armpits and drags him away. He helps teach Colton sign language because he watches Colton's videos with him. And when Colton does a sign correctly he cheers for him and says, "Mom, he's definitely learning."

I'm so glad that Weston finally opened the door at age 5. He knows that Colton has Down Syndrome and that means that we need to help him more. And he's up for the challenge. Seeing Weston love on Colton and teach him is one of the greatest gifts God could give me. I just know that Weston is going to be a better person because he has a brother with Down Syndrome. And Colton is so very lucky to have an older brother that loves him so much. Their relationship is so sweet...and I'm excited to watch it grow.

The Story on Baby #3

If you've been following my blog, you know that about a year and a half ago I had a very traumatic miscarriage. I hemorrhaged at 7 weeks and my blood pressure dropped to 63/39. I had an emergency D & C and a blood transfusion. It was the scariest thing I had ever experienced. After that, I decided that we were DONE having children. My body had been through enough and I was completely content with the two beautiful boys that God gave me. I was ready to move on with life and enjoy my family of 4.

About 8 months ago, out of the blue, my husband says to me, "I think we should have another baby!" Ummmm....WHAT? NO! Not happening. He said, "Ultimately, this is your decision because you are the one that has to do it, but I think you should consider it. I think it would be SO great for Weston and Colton to have another sibling. I just think it would benefit our whole family to have one more child. Just give it some thought." So I did. I thought about it for at least a month. I tried to weigh all of the pros and cons of having another child. Some days I was like, Yes, we should do this. It would be a leap of faith. And then other days I was like, NO, what if I have another miscarriage? What if this child has Special Needs? To be very clear here, I want you to know that I absolutely love and adore Colton. Raising Colton is an absolute joy, but that doesn't mean it is easy. It's hard to raise a child with Special Needs and I was just worried that if we had another child with Special Needs, I wouldn't be able to handle it. Colton has dodged a lot of health bullets that another child might not. And once you've had a child with Special Needs, you aren't naïve to the fact that it could happen again. So, I was on the fence for awhile. I just couldn't decide. I didn't want to disappoint my husband by saying No, but I also didn't want to say Yes just because he wanted to have another baby.

One day, I decided that I wasn't going to decide about having another baby. I was going to pray about it and give it to God. I remember my prayer. I told God that I was completely happy and content with the two little boys He gave me. If they were the only two children I was meant to have, then they were all I needed. But if it was His will for us to have another healthy, typical child, then I'd do it....but I begged Him not to let me get pregnant if it was going to end in miscarriage or with a challenging Special Need. After that prayer, I remember feeling a weight lift off of my chest. I was done thinking about having another baby. I was going to enjoy the family I did have and live life. I was going to focus on the here and now, not the future. I completely stopped thinking about it.

2 months later, I found out I was pregnant.

Hunter and I were shocked! We decided not to tell anybody. The first 8 weeks for us are SO hard because we've already had 4 miscarriages. So, we tried not to think about it and to go on with life. When I would get nervous, I would tell myself, "Thy Will Be Done." I didn't want to ask God not to have a miscarriage because sometimes a miscarriage is necessary if the baby doesn't develop appropriately. I just had to TRUST IN HIM. We did get a lot of special treatment those first few weeks because we have a history with the Fertility Clinic because of multiple miscarriages. Side Note: They did Genetic Testing on Hunter and me after we had Colton to see if there was a reason why we had a child with Down Syndrome to help us decide on whether or not we would have any more children. We found out that Colton was just a 1/700 shot. We just hit the Bulls Eye (or the Jackpot, as I like to call it). We were told that based on our age and history, if we decided to have another child, we had a 1/100 chance they'd have Down Syndrome. They told us that if we ever got pregnant to come in for blood work and early ultrasounds. They wanted to make sure I didn't have another traumatic miscarriage like I did the time before. So, we went in every week until we were released to my regular OB. My numbers were looking good and the baby had a heartbeat that eventually reached 162 beats per minute. We felt good about how things were going, but we knew that at 10 weeks we would do the Harmony Test to see if this baby had Trisomy 13, 18, or 21 (Down Syndrome). It was a simple blood test but we had to wait 10 days for the results. It was a LONG 10 days. I spent a lot of time in prayer because it helped to calm my nerves. (By the way, this test wasn't offered when we were pregnant with Colton and we never in our wildest dreams thought it was even possible for us to have a child with Down Syndrome...we were very naïve...but we are thankful Colton was a surprise so we didn't worry the entire pregnancy, however, with this one, we'd like to be prepared).

I'll never forget where I was when the nurse called me with the results. I was sitting on a stool in my bathroom doing my makeup. When she said her name, my heart started pounding. She said that the results were in and that everything came back NORMAL! She also told me the gender, Male, and I laughed when she told me. Of course it's a boy!! I hung up the phone and started sobbing. I called Hunter crying and almost freaked him out, but I couldn't control my emotions. These were happy tears! All of the worry inside me just came pouring out. I didn't realize how much I had been holding inside of my little body.

People often ask me if I'm going to try for a girl or if I wanted a girl. The answer is NO! I absolutely love being a boy mom. I'm a total boy mom! After you've been through what we've been through...GENDER DOESN'T MATTER! How about the fact that we have healthy babies that made it full term! When I hear people get upset over gender, it does rub me the wrong way. There are so many people out there longing for a baby of any gender. People are having miscarriages and stillbirths and infant loss. They would give anything to have a healthy baby, boy or girl. I'm just thankful that this baby has made it so far. I can't wait to meet HIM.

We have a big Level 2 Ultrasound coming up on March 6th. When I think about it, I get nervous. Please pray for us. We pray that this baby has 10 fingers and toes. 2 arms and 2 legs. A healthy heart and lungs and a developing brain, etc... We still aren't out of the woods, yet, but we are hopeful that he will be healthy as can be.

I didn't plan on having Baby #3. Never did I dream that I would have 3 children. Or 3 boys! Or a child with Down Syndrome. But that's the beauty of life. It's exciting and unpredictable, but sometimes challenging and scary. No matter what, I know that God is in control. Hunter and I have been through a lot in the past 7 years, yet here we are, still alive and kicking and happy. No matter the end result...we will be okay! I'm giving it to God. After all, THY WILL BE DONE!

A Different Kind of Love

There is something so special about Colton. It's a different kind of love. A love that just makes your heart melt and explode and smile all at the same time. It's hard to explain, but it's true. Multiple family members have told me that they feel the same way. I guess it's because we all know that Colton is special. He has special needs and he requires extra attention...and he has to do a lot of things that seem unfair because of that extra chromosome. But 99% of the time he does them with a smile on his face. He is a rockstar. And I would venture to guess that he just might be the family favorite. And I hope nobody in the family takes offense to that...because Colton is just in a league of his own.



These two boys are Colton's cousins, Tyler and Tanner. Their love for Colton is something fierce. They always want to Facetime to see Colton and they LOVE watching his videos. They always ask me, "Aunt Carrie, when Colton comes to visit, can I help put on his pajamas and change his diaper?" They want to hold him and kiss him and play games with him.



My sister has talked to them about Colton having Down Syndrome. Tyler is 6 and is old enough to understand. A few weeks ago, my sister sent me a text about a conversation she had with Tyler. Apparently, they have some friends who are pregnant with a third baby and my sister was talking to Tyler about it. She said, "Tyler, Mommy will not be having a 3rd child. Did you want one?" He said, "Well, no." Then he went into deep thought. He hugged his Mommy and said, "Mommy, the ONLY way I would ever want you to have a baby is if you could promise me that the baby would be JUST perfect like Colton and have Down Syndrome, too. Otherwise, I don't want one."

Y'all, that brings tears to my eyes! How sweet! Even a 6 year old gets it! Even a 6 year old knows how special Colton is.



What is really cool is that Tyler's teacher has a grown daughter with Down Syndrome. How crazy is that?



If you have children, I encourage you to talk to them about children with Special Needs, when you feel the time is right. Teach them about Colton. I want kids to love and appreciate Colton for who he is. They will find that he's more alike than different. He's happy and fun and just likes to play. It just takes him a little longer to learn and progress. And if you have any questions or concerns about how to approach it, please feel free to ask! Your children will benefit greatly from having friends with Special Needs. We are SO blessed to have Colton in our family.



We absolutely adore Colton. What a special gift he is to our family. We are all better people because of him. He has taught us to slow down and focus on what is truly important in life. We are so lucky that we get to experience a different kind of love.

"Nothing is closer to Heaven on Earth than having a Special Needs child in your home." www.leftwithasmile.com

"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- Real Love."

-Spectrum Superstars

Swallow Study #3 & ENT Visit (21 months)

I took Colton for his 3rd Swallow Study at the end of September to see if he was making any improvements with his swallowing. He's been drinking liquids thickened to Stiff Honey since he was 2 months old. His Speech Therapist joined me for the appointment so that she could see how he did and ask questions I might not think to ask. I was so glad she was there with me!



We were hopeful that Colton would show improvement, but unfortunately, that was not the case. Colton was able to eat food without aspirating, however, he did aspirate on Honey Thick liquids. He even aspirated on Stiff Honey liquids. He doesn't aspirate every swallow, but he does have some penetrations toward the airway. They think that he might aspirate every 6 swallows or so. Bummer! With aspirations, Colton is at risk of getting pneumonia or a serious lung infection. Since it has been almost 20 months since he started Stiff Honey and he's still showing no signs of improvement, they wanted to refer us to an ENT to have his throat looked at. They think that something other than low muscle tone is causing his swallowing issues. I was a little defeated but I'm learning to take things in stride so only a few tears were shed. Our ENT appointment was scheduled 3 weeks later, so we didn't have to wait long to find answers.

I was warned ahead of time from several friends that the ENT would want to do a scope of Colton's throat. They told me that I needed to prepare myself because it wasn't a pleasant procedure. Luckily, they told me it wouldn't last long. A nurse sat in the chair with a sheet on her lap to wrap around Colton. I warned her that he is a STRONG little dude when he wants to be.



They sprayed his nostrils with a numbing solution and then stuck the scope in his nose to take a video of his throat. I was able to watch the video during the procedure, which was cool, but I had to listen to my boy scream bloody murder. It was SO sad. It only lasted a few minutes and then they were done. It took a little while to calm him back down after the procedure...and the poor kid did have some blood in his mouth.



The ENT thinks that Colton is having trouble swallowing due to coordination issues with breathing and swallowing. Colton's adenoids and tonsils are extremely large and the back of his throat is extremely crowded. He's just having trouble managing everything. Her recommendation is to remove Colton's tonsils and adenoids and trim any tissue near the larynx that may need to be trimmed. She said she can't guarantee that by removing tonsils and adenoids his swallowing issues will disappear completely, but it should help. With continued therapy, he will eventually be able to drink regular liquids. She is concerned that if we don't remove them soon, he could get a lung infection or pneumonia since he's not technically "safe" drinking Stiff Honey thickened liquids. So she wanted to get him on the schedule ASAP.

But we have a problem...Colton is NOT allowed to have any surgery because of his heart. Colton has fenestrated ASD's and his Cardiologist told me back in the spring that if an air bubble were to get in the line of the IV during a surgery, it would kill him. We have a referral in to meet with his Cardiologist. I'm waiting to hear when that appointment will be. She will make the decision on whether or not Colton is allowed to have surgery. In my opinion, I don't think he's going to be allowed to have surgery and I don't know that she's going to want to do his heart surgery now (as opposed to when he's 3 or 4 years old) when he hasn't been very sick. He's been lucky so far! I am super serious about thickening his liquids and I always make them as thick as I can. I even thicken his Tylenol before I give it to him. I do my very best to keep my boy healthy.

So now...we wait. Hopefully, we will meet with our Cardiologist soon and she will make the decision. We would appreciate your continued prayers for our Colton. Pray that the holes in his heart close. Pray that he will eventually be able to get his tonsils and adenoids removed so that he will have an easier time drinking and breathing. Pray for me as I try to be strong and hold it all together. This journey isn't an easy one, but I'm thankful to have a wonderful support system to walk with me every step of the way.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6