Dear Younger Me

Dear Younger Me (1 year ago to be exact),

Right now, you're 9 months pregnant. All you know is that you're going to give birth to a baby boy in the month of January. You are excited and wonder what life will be like with two kids. Will the new baby eat well, sleep well, cry a lot, get ear infections, look like his brother...??? You have absolutely no idea what is about to come or how much your life is going to change. There's not even one ounce of you that expects anything to be "wrong" with your baby.

In a few weeks, you're going to go into labor in the middle of the night. By the time you make it to the hospital and into your room, you'll only wait 4 hours to meet him. Your delivery will be SO easy, pain-free after a fabulous epidural, and fast. They'll take that 6 lb 13 oz. baby boy with blonde hair and blue eyes over to check him out and clean him up...and you'll soon realize that things are taking longer than normal. You'll begin to worry...you'll wonder what's "wrong?" But you need to know that there's nothing "wrong" with your baby...he's just special. EXTRA special....because God decided to give him an EXTRA Chromosome.

You're gonna be in shock...you're gonna be scared...you're gonna be disappointed...you're gonna cry...you're gonna question God...you're gonna feel like your world is crumbling down.

But I'm here to tell you that you're gonna be OKAY! Wipe away those tears. Don't question God...TRUST God. You can do this! You were chosen to be Colton's Mama. You are exactly who he needs.

Yes, your life is going to change...but the greatest part is that YOU are going to change. You are going to learn just how strong you are. You are going to be forced to get out of your comfort zone and make new friends. You're going to meet so many new, incredible people. You're going to gain SO much knowledge. You're going to learn to be patient and to celebrate small victories. You're going to look at people through different eyes. You're going to grow in faith. You're going to be a better version of the "younger me."

In a year, you're going to rock a chubby, happy, blue-eyed baby boy to sleep...and your heart is going to burst with love. Your eyes will fill with tears because you feel guilty that you ever felt disappointed. Your beautiful baby boy will eat well, sleep well, cry very little, never have an ear infection, and look so much like his older brother. He will be EXTRA special. He will change your family from ordinary to EXTRA-ordinary. He will bring you a joy you've never known.

You have no idea how blessed you're about to be. "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

With Love,

The Better Version of the "Younger Me"



I was inspired to write this because of the song by Mercy Me called Dear Younger Me.
If you haven't heard it, I encourage you to listen to it. I hear it on KLOVE all of the time.
I've added the lyrics of the song below...



Dear Younger Me

MercyMe

Dear younger me
Where do I start
If I could tell you everything that I have learned so far
Then you could be
One step ahead
Of all the painful memories still running thru my head
I wonder how much different things would be
Dear younger me,

Dear younger me
I cannot decide
Do I give some speech about how to get the most out of your life
Or do I go deep
And try to change
The choices that you’ll make cuz they’re choices that made me
Even though I love this crazy life
Sometimes I wish it was a smoother ride
Dear younger me, dear younger me

If I knew then what I know now
Condemnation would’ve had no power
My joy my pain would’ve never been my worth
If I knew then what I know now
Would’ve not been hard to figure out
What I would’ve changed if I had heard

Dear younger me
It’s not your fault
You were never meant to carry this beyond the cross
Dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

Every mountain every valley
Thru each heartache you will see
Every moment brings you closer
To who you were meant to be
Dear younger me, dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

Milestone Alert- 10 Months!

Colton can officially SIT UP!!!!! Hallelujah! We have been waiting on this milestone for a LONG time!!!!

On Saturday, November 19th, it was like a light switched on and he could just do it! We are SO proud. He could sit some before, but it was like 30 seconds at a time and then he'd fall over. Now, I can leave him and he can actually play with toys without falling over right away.



It is funny that as soon as we switched his Reflux medicine from Zantac to Prevacid he started sitting up....so we are wondering if maybe the new medicine is helping his stomach feel better. He used to arch so much when we'd try to sit and he'd spit up all of the time. So...maybe it's a coincidence, but I do think that his tummy is feeling much better. And he's not spitting up as much as he used to. That's a win, too!

He's also rolling all over the floor and is starting to get tangled up in his blankets.





Now, we've got to work on transitions. We need to teach him how to go from lying on the floor to a sitting position, without the help from mommy. We also need to learn how to go from a sitting position into a crawling position. He can't quite hold the crawling position without some help from us...it's hard to keep that large tummy off of the ground. We've gotta get his arms stronger so that he can hold himself up.



We are SO excited that Mr. Colton can finally sit up. He's outgrowing his car seat carrier, but he couldn't sit up in a cart yet, so grocery shopping was getting quite interesting. Next trip, we'll try to sit in the cart like a big boy! And strapping him to me is no longer an option...unless I want to break my back. He's quite a heavy dude these days!

Sitting up makes playing more fun...especially when you go to The Wonder Place.



We are proud of you baby boy!!! Keep working hard!

Marriage

Did you know that about 50% of all marriages end in divorce? Did you know that percentage increases to 80-90% for couples who have a child with Special Needs?

Hours after Colton was born, Hunter and I were constantly on the Internet searching for information. We read articles and blogs and watched videos about Down Syndrome. We were trying to find as much information as we could about it because, to be honest, we knew nothing! We had to quickly catch up because we wanted to better understand Colton. We needed to know what to expect for his health and therapy and education and future. We were looking for things about him, and we didn't think about what it meant for us. We came across these statistics pretty quickly. Hunter brought it up to me in the hospital. He also told me that he read that if the child has Down Syndrome, the percentage is actually not as high. Why? Probably because they ooze love and happiness...and that stuff is contagious. But...the statistics are there. And Hunter and I decided that we didn't want that to happen to us.

Having a child with Special Needs is stressful. Luckily, we've been blessed with a healthy little boy. I can't imagine how much more stressful it would be if we were in the hospital having multiple surgeries and procedures. There's just so much to do and think about. The child becomes your first priority because with DS, the first 12 years are crucial. My PT told me that it's so important to cram as much information as you can into your child because usually after the age of 12, they plateau. On a daily basis, I try to provide a stimulating environment for Colton...

-We try to do some PT to strengthen those muscles and encourage movement
-We try new foods to explore with tastes and textures
-We watch Baby Signing Time to learn Sign Language to help with future communication barriers
-We read books to expose him to new vocabulary words
-I try to repeat the same words over and over so he can learn them (Up, Bottle, Eat, Mama, Dada, Weston, Hi, Bye...not just so that he can eventually say them, but so that he can associate the word with its' meaning)
-We try to practice waving and clapping and signing (he stares at me so intently but he can't quite do those yet)

I just have a lot on my plate each day. I have to be intentional with everything I do. I try to do those things while Weston is at school and Hunter is at work, so that when they are home, we can just play and enjoy family time. I've got to remember that I have 3 boys to take care of and spend time with. Some days do I slack off? Absolutely. Some days we are running errands and cleaning house and watching tv and we don't do much therapy. We have to live a little! But it's always in the back of my mind. I just want the best for Colton...he's my biggest job! So with that being said, I can see how marriages struggle. I can see how pouring so much energy into one child can leave you empty...and you've got nothing left for your spouse. But...you've got to work at it. Just like with any marriage, you have to find time to be together. For us, we try to get our kids to bed at a decent hour so that we can have some time, just the two of us, before bed. Hunter and I like to watch tv together. We record shows and as soon as the kids are asleep, we binge. We also like to devour candy together...it has always been our thing. My friends know that when they come over, there will be candy at my house! We also try to go on the occasional date...it probably doesn't happen as often as it should, but we do get to go out to eat every now and then. We also talk on the phone a lot throughout the day. COMMUNICATION...that's a big one! He randomly calls me to check on us to see how we're doing. He loves to know how Colton did in therapy or what the doctor said or how Weston was at school. We are a team! We make decisions together, celebrate our kids' successes, and encourage each other when we're feeling down. Not a week goes by that Hunter doesn't send me videos or pictures of kids with DS. He is always researching and reading...and I love that about him! He's been doing that since Day 1. They always say one parent grieves more than the other. In our marriage, that's Hunter. This journey has been hard on him. He likes things to be neat and organized and perfect. He likes to be able to "fix" things. And this is something he can't "fix." What he can do is read and research to see how we can make Colton's life better. It's therapeutic for him. Knowledge is power. He sent me a picture this weekend of a boy with DS who had killed a deer...and he was ecstatic! He loves to hunt and he wasn't sure whether or not Colton would be able to hunt with him. I told him, "Of course he can hunt with you. He may not be able to shoot a gun, but he can go and spend time with you and Weston. I'm sure he'll love it! Maybe he can learn to blow a duck call." I just have to reassure Hunter that things are going to be better than he expects. His mind is always worried about the future...where's Colton gonna end up? Is he gonna be happy? Will he have friends? Will he feel lonely? He just worries so much about him and I try so hard to calm him down and make him live in the moment. None of us know what the future holds. Worry less, pray more. God will help us throughout this journey...and He continues to amaze us.

Marriage isn't easy. You have to work at it. You have to know each other's strengths and weaknesses. Through our journey with Colton, we've actually grown closer together. We NEED each other. On my birthday card last month, Hunter wrote a message inside that brought tears to my eyes (because if you know my husband, he's not super emotional or lovey dovey)..."I know we have been through a lot this year, but your strength in each situation just grows my love and respect for you. I couldn't imagine my life without you..." He appreciates me...I appreciate him. We are in this together. We will not add to the divorce statistic. We will make it! In 3 months, we celebrate 10 years of marriage. A decade together...with many more to come. That handsome man has my heart...

My Angel

"We've got an issue here," the quality control angel called out.

"What's the problem?" asked God, in a voice that already seemed to calm the concern.

"It looks like an extra chromosome- one, two- yes, right here, an extra one."

Now smiling, God answered, "That's not a quality concern. It is a distinction. The manual addresses it. You're new on the line, aren't you?"

"Why yes, this is my first day," apologized the angel- searching through the manual for any reference to this.

"I'll talk you through it...there are just a few assembly modifications. First, locate the hug sensors. Do you see the dial?"

"Yes, right here. Oh, I think I tickled him."

"Turn it up."

"How much?"

"All the way."

"Done."

"Now locate the two smile triggers- they are located on either side of that cute little button nose."

"I found them."

"Adjust them a little closer to the surface. Closer, closer, perfect!"

"Is that it?" asked the obedient angel.

"Almost," answered God. "Now, very gently, open his heart. That's it. Measure two, no, make it three extra scoops of love."

"Will it fit? It's so tiny!"

"Oh, these little hearts stretch incredibly. It will fit."

"Done. Is that it?"

"One more thing. Move him from the random distribution belt to the select premium belt. These little ones aren't given to just anyone."

"There. He's done and ready to go, " announced the angel.

God stepped over, as if to inspect the handiwork of this new angel on the line. But that wasn't His intent. Instead, He picked up this little one and help him close to His heart. Holding him for so long the angel became concerned.

"Is he alright? Did I do everything as you instructed?"

Still holding him close, God said, "He's perfect. I just find it hard to let these special ones go, for they are Heaven to hold." And He gently kissed him on the cheek and sent Colton to our hearts.



My mother-in-law has always told me, "When I see pictures of Colton, I feel like I'm looking into the eyes of an Angel."

He's my Angel....and I'm thankful that God chose me to be his "Ma-Ma" (which just so happens to be Colton's first word).

OT Evaluation (10 months)

This morning, bright and early, I took Colton to Access for his OT Evaluation. Colton was evaluated by Easter Seals when he was about 4 months old and he didn't qualify at that time. They wanted him re-evaluated at about 9 months. Colton was sitting at a bench and they'd offer him toys to see how he'd grab them or shake them. First, she started off with a block. He immediately grabbed the block. Colton's grip strength has improved tremendously from when he was born. If he's holding onto something, I usually have to pry it away from his fingers to get it back. Watch out for your hair or your earrings!! I've lost some hair in the past few months. She then gave him one block in his left hand and put a second block on the table to see if he'd grab it with his right hand. He did! They want him holding two objects at the same time. She showed him how to bang the two blocks together, but he didn't do that. She gave him a rattle to shake and he did shake it. She said that they really want him shaking the rattle up and down for 60 seconds in an arc motion, but he didn't last that long, which is ok. He did get credit for shaking the rattle.



She offered him a piece of paper and he grabbed it from her. She wanted him to crumple it up into a ball so she showed him how. She put the paper on the table and wanted him to grab it and crumple it. He was able to get the paper off of the table, but didn't crumple it. She then put two tiny beans in front of him to see if he'd grab them, and he did swipe with his hand to get it into the palm of his hand. He can't quite do the thumb, finger pincer grip, but she was proud that he could swipe them. She kept offering him things like shoestrings and toys to see how he'd manage them. He did really well!



After she was finished, she scored Colton. She said that to qualify, he'd have to have a standard deviation of -1.5. Colton scored a -1 and a -0.67. Colton does not qualify for services at this time. She said both of his scores fall within the Average range. With her report, she's going to give me Home-Programming suggestions so I can continue working on things at home. We can do a lot of practice in the highchair during mealtime. Ex: grabbing small items like puffs with our thumb and finger. Holding a toy with just our fingers allowing space between our fingers and palm. Shaking toys up and down as opposed to side to side. We've got Colton using his hands and arms better, so now we want to focus on using our fingers more.

I'm very proud of my Colton! I didn't know what to expect going into the evaluation, but I knew if he did qualify, we'd just have to find more time to take him to OT therapy. Obviously, we'd make it work, but I'm a little relieved we don't have to work that into our schedule just yet. Next year, he'll be going to school full-time, so he will receive all of his services while he's at school. Outpatient therapy can become quite a job when you have PT, OT, Speech, and Feeding Therapy. Luckily, we only do PT and Feeding (which should start sometime this month). Colton sure keeps me busy with all of these evals and appointments, but I'm thankful that he's doing so well!

**I do have to give a shout-out to our fabulous PT who has helped me over the past 9 months. She has been giving me suggestions and tips to help Colton in OT, too. She's very experienced and knows what he should be doing for OT....without her tips, we'd probably be way behind. She's the best!!!!!!!

Mommy & Me Gymnastics Class

After Weston was born, my mother-in-law agreed to keep him full-time so that I could continue teaching. She wanted activities to do with him so she signed him up for a Mommy & Me Gymnastics class. They had a great time going each week. Weston would practice crawling and walking, they'd play with the parachute, they'd clap to songs, roll down the cheese mat, etc.... After Colton was born, I decided to stay home full-time, so my mother-in-law didn't get the same bonding time with him. She asked me if she could sign him up for Gymnastics so that she could spend some time with him and I said, "Absolutely!" I think it's great for him to be around other babies. It's like another therapy session for him....lots of stimulation, babies to watch and learn from, and muscle building activities. She takes him each week, but I've taken him twice while she's been out of town.

The first time I took him to class, I got a little choked up. I've never been around that many babies about his same age. I went into the class knowing that Colton would be behind most of the other babies, but it was still hard for me to see that Colton, although not the youngest, was the farthest behind. I didn't cry, but I did feel a little lump in my throat. It's just hard to see it in person. At home, I don't really notice it because it's just us and I forget what "typical" 10 month old babies can do...but being around kids close to his age, it stands out to me like a sore thumb. And as he gets older, it's just going to become more and more obvious. While I was there, I felt like God was telling me, "It's ok, Carrie. It's ok. He will get there." I decided to suck it up and put on a smile on my face and have fun with my baby. There were some activities that our teacher would have the other kids do that Colton couldn't do. She'd get them started on something and then come work with Colton, individually. Most of the stuff she was doing were things we do at therapy. I was thankful that she took time to work with Colton so that we wouldn't feel left out. She knows he has DS and is just the sweetest. I enjoyed spending time with Colton and we made it fun. We did a lot of songs where you have to raise your arms up and down and cross the midline. We kicked our feet and played with bells. We blew up the large bounce house thing and let the kids bounce. We did things in front of the mirror so the kids could see themselves close up and far away and upside down. It's really good for him to see the other babies. They can teach him things I can't. Colton seemed to really enjoy it! My mom was there to watch us so she snapped a few pictures.







Later on, my mother-in-law asked me if it was hard for me to be there and if I'd rather not take him anymore. I told her that, initially, it did sting, but I was okay and I want him to continue going. It's good for him to be there. Just because it might hurt my feelings, doesn't mean I'm going to stop going. This is not going to be the first time that I'm going to see other kids and feel a little sting because I know he's behind. It's going to happen a lot...like when everyone his age is walking and talking and running and getting their driver's license. I've got to develop some thick skin...it's gonna be okay. And I keep telling myself that it's not fair for me to compare Colton to "typical" kids because he's not "typical." My mom told me the other day that my niece, who is about 6 weeks younger than Colton, is starting to crawl. My sweet sister was afraid to share the news with me because she didn't want to upset me. I sent her a message and told her not to worry about it. Celebrate her milestones! I don't want people to hide things from me. Yeah, it stings a little, but I'm tough and can handle it. Now it's crawling, but soon it will be walking and talking and riding a bike. It's gonna happen. I also know that Colton's cousin who is only 2 months old will surpass him in no time. Some things in life are going to be hard for me and I'm going to have to push through and make the most of each situation. My job as Colton's mommy is to provide him with as many opportunities as I can for him to be successful...some of those opportunities may upset me, but after all, it's about him, not me.

I think the hardest part is that Weston was always physically advanced. He was starting to take steps and walk around 10 months (which is Colton's current age). As soon as he learned to walk, he learned to run. He has also always been a climber. He'd climb in and out of that crib with ease. He runs fast, he jumps high, and he's a little bit too dangerous for his own good. So for us to have a child that is behind physically is difficult for us. We aren't used to the slow pace. But in some ways, it's nice. I don't have to chase Colton around and worry about him like I did Weston. Weston was capable, but dangerous. I'd walk in the room and he'd be standing on the coffee table. I had to put him in a baby pen to keep him contained or else he'd tear up my house. With Colton, I haven't had to lower the crib yet. I get to enjoy him being my "baby" longer because he's not so busy and mobile. And he is the best cuddler around. Colton is sitting better but I still can't leave him while he's sitting because he falls over. His therapist has him working on holding his body up in four point (the crawling position) and he can hold it for a little while before he tires and face plants. His legs are much stronger than his arms. We keep practicing our baby push-ups. Colton is rolling all over the place now to get toys. The important thing is...that Colton is making progress. I can see him doing things we've waited for him to do (like grab his feet and play with them or bring toys to his mouth or roll to get a toy). Slow and steady wins the race. Colton will be able to do everything (crawl, stand, walk, run) but it's just going to take time. And mommy and daddy are getting a really good lesson on PATIENCE.

Colton will continue to go to his Mommy & Me Gymnastics class. As kids learn to walk, they advance to the Toddler Gymnastics class. We may be in the Mommy & Me class for a little bit longer than others...and that's ok. The purpose is for Colton to have fun and to get stronger and to see and interact with other babies. And I get to meet new mommies along the way.

Our journey with Colton has just begun. And it's different and beautiful and stressful and exciting and humbling. My mommy heart is still learning how to deal with all of it. But not a day goes by that my heart doesn't explode from the smiles and joy that little boy gives me. He is worth it.

9 Month Checkup and Speech Evaluation

This week I took Colton for his 9 month checkup. In the waiting room, I filled out the ASQ that they have you do at every checkup appointment. Well...Colton pretty much failed it. But guess what? I wasn't sad about it...I actually chuckled. I didn't let it bother me. I CAN'T let it bother me. Colton is not a typical baby. He is not doing what most 9 month old babies are doing...and that's ok!!! Colton is moving at his own pace...all babies move at their own pace. He probably functions more like a 6 or 7 month old. But the good news is...Colton is healthy and happy! And he's BIG! Here are his stats...



These are the stats for a TYPICAL baby. Colton is pretty much in the 70th percentile for both height and weight. On the Down Syndrome scale, he's even higher than 70th percentile...like almost off the charts. The doctor laughed. She was very happy with his growth...and I'm glad to see that his height and weight are proportional. He's slowly starting to get longer which is making him look less chubby. But there's still plenty of chub to go around.



Colton gets so excited about the noises the paper makes on the table. He likes to wiggle around and pretend he's gonna fly away. This is his Superman pose.



I was excited he wasn't going to have to get any shots....until they asked about his Flu Shot. So...we did get a Flu Shot. He cried pretty good, but calmed down after a couple of minutes. All of these pictures are pre-flu shot. Unfortunately, he has to go back in a month for another dose since it's his first one.



Moving on to his Speech Evaluation. Last week, he was evaluated at Access for Language and Feeding. His Feeding Evaluation was first. The Speech Therapist fed him different foods to see how he could manage them. We did green beans (Level 1 baby food) and then thickened it with oatmeal. She liked the way he was eating the food off of the spoon, but he was having a little trouble with the thick textures because they would leave residue on his tongue. We gave him some Puffs and sometimes he'd lose them in his cheeks. A typical baby would move their tongue to find the food in their cheek, but Colton just lost it completely. We had to go fish it out to show him that he still had food in his mouth. Sometimes, he'd push the puff back out with his tongue thrusting. With DS, they usually move their tongues in and out, not side to side (tongue lateralization)...so that's something he needs help with. The therapist said that he's probably 2 months behind where he should be with eating. Most of that is my fault. I'm that mom that is paranoid about kids choking, so I don't experiment a lot. I kind of stick to things that I know they can't choke on. I did the same thing with Weston. With Colton, I've been even more paranoid because I don't want him learning bad tongue habits that are going to cause more Speech issues in the future. Also, he has a very sensitive gag reflex, so he tends to gag on the tiniest things (like a puff broken into thirds). So, most of the delays he has are because of lack of exposure. The Speech Therapist told me that she could help me. He would automatically qualify just because of his aspirating issues, but he is also a little behind where he should be. I told her that I really WANTED her help! I'm not a professional and I'm really dreading the change from bottles to real food. I've got the bottles down pat and switching means a whole new learning curve for me. I know I have to do it, but I'm anxious. I've tried to use a straw sippy cup with Colton a few times because that's what they recommend, and it's easier said than done. I put the straw in his mouth and he just doesn't know what to do with it. A typical baby would close their lips on it and suck, but he just doesn't. I really could use her help with that, too. That's the first thing she wants to work with him on. He needs to be able to suck out of a cup for when we switch to milk. Straws are better because they work all of the muscles in the face and we want to preserve the tone he has in his face. A regular sippy cup requires you to throw your head back and open the airway, which isn't great for a child who aspirates.

So...Colton is going to qualify for Feeding Therapy. He will go 2 times a week for 30 minute sessions. It will be directly after his Physical Therapy, so that's perfect for me! I'm very happy to have help as we make the transition from bottles to food!

Colton also had a Language Evaluation last week. It was basically a lot of questions for me to answer about Colton's communication. For example, does Colton make any consonant sounds? Does he understand what "NO" means? Does Colton babble? When you say Daddy's home, does Colton look around for Daddy? Does Colton look for you if you talk to him from the kitchen? Does Colton play peek-a-boo? Will Colton wave to you if you wave to him? Etc... Colton scored an 85. He is right on the border between Average and Below-Average. Babies don't qualify unless they are below a 77. So...Colton will not qualify for Language at this time. Language is actually a strength for him. He will give us a high five, he is starting to wave, and he likes to babble (making consonant sounds Ma and Ba). I've posted a video on my Instagram that shows him "talking." It's so cute. It makes me so proud that he's trying to communicate. Colton will be reevaluated in the next 6 months to see if he qualifies at that time. But until then, I'll keep practicing at home. She gave me lots of great ideas for encouraging communication, including games that teach conversational skills (I shake the rattle, you shake the rattle).

Our sweet baby Colton is doing really well. He's getting stronger. He's obviously happy. We are thankful for his health and growth. He's a blessing to our family. He's 9 months of AWESOME!