What A Beautiful Name

I was driving all three of my children home from school the other day, and I had a moment. It was a beautiful 65 and sunny afternoon. The trees were red and orange and yellow. The sky was blue with big, puffy white clouds. Weston was in the backseat singing, "You have no rival, you have no evil." I told him the correct word was "equal, not evil" and giggled to myself. I picked up my phone and turned on this song he was singing, "What a Beautiful Name" by Hillsong Worship. I love this song and Weston loves it, too, because they sing it at school. As I was singing the lyrics, I heard Colton trying to sing along in the back (with his favorite green and yellow shovels in hand). I kept hearing him say "Jesus" and it absolutely melted my heart. Tears starting streaming down my face. I was overcome by emotion and a flood of memories came back to me. Memories of the days when I was heartbroken by his diagnosis. Memories of the days when I'd sob in the shower or while driving because MY child was born with Down syndrome. Memories of waiting for milestones to come and trying hard to hold back the tears when I'd see typical kids just naturally develop.

The first two years of Colton's life were really hard for me. Grief came in waves. I'd be good for a really long time and then something would happen and boom, I'd be sad. I knew it was unfair to compare Colton to typical children, but it was so hard to watch children younger than Colton learn to sit and walk and talk before him. But when Colton finally decided to walk at 26 months, I felt this huge weight lift off of my shoulders. Colton was finally given some independence. Colton could play at the park with other kids. As soon as he learned to walk, I just felt something change inside of me. I finally was able to accept Colton for who God made him to be. I finally started to shift my focus from "how far behind he is" to "how far he has come."

My moment in the car was a beautiful moment for me. It was a moment when I realized how much I've grown throughout this experience. I started this journey feeling sorry for myself, and now, I am so grateful for the gift that Colton is to my family. I get to watch the joy he brings to his grandparents...my sisters...my extended family...my neighbors...my friends...his teachers...his therapists...and his classmates. One of Colton's teachers told me the other day, "I am so thankful to have him in my life." Could a parent hear better words from a teacher?

That song reminded me that God's plans are far greater than my plans. Sometimes, we have to go through some hard times to get to the good stuff. Colton is the good stuff. He is my superhero...he is my hunk. He makes me realize that there are more important things in life than being the smartest or the strongest or the fastest. Colton is a little angel and I think he makes Jesus smile.

"What a beautiful Name it is
Nothing compares to this
What a beautiful Name it is
The Name of Jesus."

Summer

It's that time of year. Everyone is starting to post pictures of their kid's last day of school. Summer break is here! For Weston, that day is tomorrow. He is SO excited to sleep in and play and swim and relax. I'm so excited for him because I remember how wonderful it was to finish another school year and finally have the freedom to just be a kid. But I can't help but be a little sad and tear up because my dear, sweet Colton doesn't get a summer break. Is he sad about it? No. Colton doesn't even know what summer break is or that kids don't have to attend school for 2 months...but I know. I also know that Colton has to work SO very hard to do basic things like run, jump, talk, eat, dress/undress, etc...so a summer off for him would be detrimental. He NEEDS to be at school. And Colton really loves school. He thrives on routines and schedules, so it's great for him. So as much as I'll miss him everyday, I know he's where he needs to be. And as long as he is happy, I'm happy. Luckily, Colton has a really awesome Daddy who has offered to take Colton to school everyday so that I don't have to get the other boys up and out of the house early each morning. We are so thankful for that! If I'm being honest, it will be easier for me to only have 2 kids each day as opposed to three. I'll get to have some fun time with my big and my little...but we'll definitely be missing our middle. He will get to join us for Memorial Day and 4th of July...and we certainly can pull him out for a few days if we decide to go do something fun, but for the majority of the summer, he will be at school.

Even though he can't join us for activities during the week, you better believe Colton's still gonna have a fun summer full of swimming, boating, tubing, playing...we will just do it on the weekends and after school! Excited to make fun memories this summer with my three little boys. Happy Summer everyone!

Communication (Age 3)

When Colton was born, we knew he'd learn to walk. We knew that he wouldn't learn as fast as other kids, but we knew he would physically be able to do it with lots of therapy and time. And he did learn to walk. He took his first steps at 26 months old. It took a lot of patience on our part, but he did it and we were SO stinkin' proud because he worked so hard! And now that boy is all over the place and we think it's the greatest!

But one thing you don't always know about children with Down Syndrome is if they'll talk. Sure, a lot of them do...but...a lot of them don't. They can be non-verbal. When Colton was born, one thing Hunter said to me was, "I just want him to be able to talk to us and communicate. I know that he'll walk and I don't care when, I just pray that he talks." So we decided we'd try communicating with Sign Language first. We bought the DVD's called "Baby Signing Time" and Colton loves them. We watch them all of the time because Colton learns best by repetition. Weston watches them, too, and helps me learn some of the signs I don't know. Colton started Speech Therapy around the age of 1 and all of his therapists have been amazing! They help him learn sign language and use lots of visuals and play games. They practice blowing because that is hard for kids with Ds and it's an important part of learning to talk. They obviously work on sounds and they sing lots of songs. Colton loves Speech Therapy. His current Speech Therapist told me that he'll mimic any sound she does (Ex: Ta-ta-ta) if she whispers it. He always whispers it back. He's hilarious! His therapists are constantly sending home little booklets like "Vocabulary for Christmas" with words, pictures, and these blocks at the bottom showing the signs.

Out of all of the areas he needs help with (Speech, OT, PT, Feeding), Speech is the easiest for me to help him. I try my best to be his Speech Therapist at home. I enjoy teaching him new words so we read a lot of books and sing a lot of songs. Colton loves music! The most you'll hear him talk is when he sings along to a song. It's so cute! Since day 1, I have made it a priority to talk to Colton about everything we do. People might think I'm crazy, but I think it works. Here are some examples:

"Colton, let's go change your diaper. Mama is going to lay you down now. Can you say diaper?"
"Colton, let's go open the blinds. Help me count. 1, 2, 3, Open!" I'd go to every blind in the house and do the same thing over and over.
"Colton, do you want to take a bath? Let's go take a bath. Mama is turning on the water. Can you say water?"
"Colton, let's open the refrigerator. Can you say open? It's time to eat. Do you want to eat? Say eat. Colton wants to eat."

So, I did this all of the time and it just became a habit (that I continue to do with Asher). Every time Colton would try to talk or make sounds, I would celebrate it. And if you know Colton, you know that there's nothing he loves more than clapping and cheering for himself. Haha. Eventually, Colton started to say words like, "More" or "Eat" or "Up" or "Ball." He had trouble saying 2 words in a row, but I was happy to hear 1 word. I'd keep requiring him to use the words I knew he could say during meals or when he'd want out of his crib or during playtime, and then I would praise him A LOT for saying those words. Slowly but surely, he began to attempt more words. Even if he didn't say them perfectly, I would celebrate each attempt. I had to be patient and continue to repeat myself dozens of times, but it was absolutely worth it to hear him speak.

Now, let's be honest. Me doing this at home is not the only reason Colton started talking. He has incredible Speech Therapists and Teachers at school that work with him every single day. Colton also was blessed with the ability to hear. I was told in the hospital that he would most likely fail his hearing test...but he has passed every single time. I was told he would probably have lots of ear infections because children with Ds have more narrow ear canals...but he has had less than 5 his entire life. I was told that he would most likely have fluid in his ears that would require tubes during his tonsillectomy...but he didn't. So, Colton being able to hear is a HUGE advantage. Colton has also been drinking from straw cups since the bottle to strengthen the muscles in his face and tongue and has been using a straw block to encourage him to suck with his lips, not his tongue (to keep that tongue in his mouth instead of wrapping it around a straw). We are so blessed to have a wonderful feeding therapist that gave us these tips because I would've never known to do these things. Colton's articulation has absolutely surprised me! I really expected him to talk like he has a mouth full of marshmallows, but he doesn't. Now, some sounds are harder for him than others but that's ok.

If a word is more challenging, Colton usually just says the END of the word...which makes me laugh. I'll say, "Colton, are you hungry?" He will say, "Gry." Or, "Colton, say baseball." And he will say, "Ball." But, he is starting to say words that are multisyllabic and is starting to use two or three word phrases. His Speech Therapist encourages us to clap out each word or syllable when we say the word to see if he will do it back to us. Base (Clap) Ball (Clap). And now he says, "Baseball." So this is what we are currently working on. It's very rare for Colton to say a full sentence, but the other day my mom called for Colton to come to her while he was in the other room and we heard him say loud and clear, "I DON'T WANT TO." Mom, Weston, and I were dying laughing. Oh, that boy is so funny and sometimes he surprises us!

Just because Colton can say words, doesn't mean he always uses his words. There are times when he's whiny after school and can't tell me what's wrong. He just holds my leg and moans and I have to try to figure out what he needs. Is he tired? Is he hungry? Does he just want to be held? So, it can be frustrating, especially when he's sick or hurt because he can't communicate what's wrong. But, I just continue to talk to him and ask him questions and try to get him to respond with a "Yes" or "No." He also doesn't request many things. For example, if we are in the car, he won't ask for me to turn on the music...but if I ask him if he wants the music on, he will respond. The other day, we were waiting in the car for Weston to finish a class and I decided to turn Baby Signing Time on the DVD player for Colton to watch. It was playing in the car, but I forgot to pull the TV down from the ceiling, so he couldn't see the show, he could only hear it. He wasn't able to tell me that so that sweet boy just listened. No worries, Weston made me aware of my error as soon as he stepped foot in the car. I felt so bad! Oops! But...Colton did bring me the remote the other day and said, "Lion King." So...there are times when he tells me what he wants.

I'm so very proud of Colton's communication. He's working really hard to talk and mimic sounds. He's made a lot of progress this school year. Being around other kids at school helps SO much!! He still has a long way to go, but I absolutely know that Colton will be verbal and that makes my heart SO happy!

And we must shout out to Colton's awesome big brother, Weston, who cheers for Colton when he says words and teaches him sign language and who reminds me, "Mom, he needs to say "UP" before you let him out of the crib!" Weston is an amazing kid and Colton is so lucky to have him! Just this week he said to me, "Mom, Colton is talking SO good!" I agree, dude. Colton is doing awesome!


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Colton's 3 year checkup

When you find out your child has Down syndrome, you quickly learn about the conditions or disorders that are commonly associated with Down Syndrome...

Respiratory issues
Heart Defects
Hypothyroidism
Infections
Speech Difficulties (can be nonverbal)
Gum Disease and dental problems
Digestive problems
Epilepsy
Mental health and emotional problems (Anxiety/Depression/ADHD/Autism/Psychosis)
Childhood Leukemia
Celiac Disease
Dysphagia (Swallowing issues)
Hypotonia (Low Tone)
Sleep Apnea
Neck Issues (Atlantoaxial Instability)
Hearing Loss
Vision Problems
Blood disorders
Alzheimer's Disease

It's overwhelming and it's scary. Kids with Down syndrome go to the doctor A LOT for checkups with specialists. And then you still have the developmental delays that require PT, OT, and Speech and/or Feeding therapy. But just like all kids, they are all different and have their own unique strengths and weaknesses and challenges. I get really sad hearing about these little babies with Ds who are having surgery after surgery to try to fix their heart or who are in the hospital on a ventilator because they caught a common virus and their little body just couldn't quite fight it off. It makes me feel guilty that we never had to do that, but we don't take Colton's health for granted. I'm not sure why, but Colton has been blessed from the start. He didn't even have to go to the NICU. We left the hospital 2 days after he was born. Sure, Colton has had some of the above complications, but nothing life threatening.

Colton had an appointment this morning with his Geneticist. As I left the appointment, my eyes welled up with tears. Happy tears. Colton is doing really well. His blood cell counts came back normal (no leukemia), his thyroid levels were normal, and his test for Celiac Disease was negative. The holes in his heart are closing on their own. His sleep apnea score went from an 18 to a 5 after his Tonsillectomy. His swallowing has improved so our thickening has gone from Stiff Honey to Nectar. His tone is improving so much with therapy. He has passed all of his hearing tests and has had less than 5 ear infections in his life. He wears his glasses and it really helps his vision. Without them, his left eye turns in. He is able to communicate with us through signs and words. He struggles with chewing but he loves to eat and isn't picky. He can use a spoon and a fork and has improved tremendously in self feeding. On the Down syndrome scale, Colton is 75th percentile for weight and 48th percentile for height. Colton loves going to school and is very social. He loves to participate and sing songs and experience everything. He doesn't seem to have very many sensory issues at this time. Colton has 4 wonderful therapists and 3 teachers that pour into him daily, as well as family and friends. It takes a village, but Colton is making progress. It might be slow, but he's moving forward, and that's all that we ask of him.

Colton is currently working on:

Coloring
Imitating circles and crosses (with appropriate grasp)
Completing a 6 and 9 piece inset puzzle
Independently dressing and undressing
Stringing 4 beads
Replicating a 3 block design
Snipping paper
Using fork with minimal spillage
Sharing (especially with baby brother)
Catching a ball
Jumping down 4 inches with one hand assist
Jumping in place with both feet
Balancing on one foot
Pedaling a tricycle
Running
Going from sitting to standing without using hands
Underhand throwing
Walking sideways on a wide balance beam
Walking up and down stairs without handrail
Chewing crunchy foods
Following simple directions
Understanding language
Communicating through signs and words
Counting to 10
Learning Colors

Wow! That sounds like a lot! And this is why he goes to school full-time because I cannot possibly begin to teach all of that by myself. I'm SO thankful for the help he receives every single day. Colton has the best therapists and teachers and doctors. They have all been wonderful and want the best for Colton. He is such a lucky little boy. I have no regrets with Colton's care. We started as early as we possibly could and there's nothing more we could possibly be doing to help him. Colton has been given the best chance to live a successful and independent life. I pray that he continues to make progress and stay healthy. We don't know what the future holds for Colton's health, but right now, we are counting our blessings.

Thank you, God, for Colton. We are so blessed that he is a member of our family and that we were chosen to be his parents. Thank you for his health...we do not take it for granted. We ask that you please continue to bless Colton in the coming years.



"Your greatest contribution to the kingdom of God may not be something you do, but someone you raise." -Andy Stanley

"Give thanks in all circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18

Colton Turns 3!

I just can't even believe that Colton is 3! I laid in bed the other night and re-lived the day that Colton was born. I could picture everything. I remember my doctor walking over to talk to the nurse then coming to my bedside to tell me that Colton was showing 4 markers for Down Syndrome. And I could feel the emotions/feelings that came when she said it...the stabbing knife hitting my chest...the loss for words...the confusion and shock...and the drowning out of all of the other sounds in the room as my head began to spin, trying to process the news. At that moment, I couldn't picture what life would look like with a child with Down Syndrome. In my mind, it would be sad...it would be hard...it would be depressing. I thought I was dreaming, but I never woke up. I was living a nightmare and I was scared to death.

I can't change the way I felt the day Colton was born. And I don't want to hide those emotions, either...because they were real. It does make me a little sad that I was so heartbroken the day he was born instead of joyful, but the truth is...I'm human and life didn't go as expected. But how many times in life do things not go the way we expect, yet it somehow turns out to be just what we needed?

Colton is exactly what I needed. I can't imagine my life without my Colton...my little ray of sunshine. He's been in our life for 3 years...and what an amazing 3 years it has been!! Colton is doing so well and has come so far and life with him is 1,000 times better than I expected. He is full of personality and makes us laugh and smile every single day. His teacher told me the other day that "he really is perfection breathing..." I'm not sure a Mama can hear a greater compliment from a teacher. Colton loves school and walks the halls like he owns the place. And he's like a little celebrity...parents, kids, and teachers walking by saying, "Hi, Colton!" Colton sure steals the hearts of others...and watching people love him and accept him makes my Mama heart SO incredibly happy and proud. Another teacher at his school told me a few weeks ago, "I love the way you love him." Because it's obvious when you see me with Colton that I am completely head over heals in love with him. The highlight of my day is picking him up from school and asking him, "Colton, did you have a good day?" And him responding, "Good day." (sometimes, ha!) OOOOOOHHHH, I love me some Colty bear. He lets me squeeze him and kiss him and rock him to sleep...and he's just so squishy and cuddly!

We had a party for Colton on his actual birthday at Rock City MMA and it was a blast! I don't think Colton really understands what a birthday is...but I sang, "Happy Birthday" to him at least 25 times so that he'd realize it was HIS special day. HIS birthday. When we'd sing to him, we'd get him to say, "ME!" It was so cute! He can also say that he's 3, but he can't quite get his fingers to cooperate to show us he's 3. Colton is so sweet. He doesn't expect a thing. Doesn't ask for gifts, doesn't request a party or a theme...he's just go with the flow and his eyes light up with excitement when we sing to him or give him gifts. Weston and I pretty much have to open all of his gifts for him because he's too busy playing with the gift he received last. He had a wonderful birthday! Colton is blessed to have so many family and friends who love him.

Here's a few pictures from his party:























I'm so thankful that Colton goes to school where he is loved. He had so many little friends come to celebrate him. It made me so happy! What a fun party we had! And we made the parents get involved and get lots of exercise, too. I think everyone was worn out by the time we left. We finished his party with a chocolate chip cookie cake and singing to Colton...which he LOVED!

Colton Dean, you are one special little boy! Nothing about life with you is sad. The hardest day of my life gave me the most wonderful little boy...and I'd redo that day over and over again just to have you here with me. Because you, my son, are amazing! I can't believe you are 3! I'm excited to watch you grow and learn this year. Happy Birthday, Dude!