Thursday, October 31, 2013

Day 31: The last of the cuteness

Meet Henry! He is 21 months old.

Biggest challenge Ds has brought to his family: The fear that due to a lack of knowledge or a stereotype, people may have low expectations or underestimate what Henry is capable of.

Coolest thing about Henry: Henry is absolutely amazing! He is such a hard worker and wants to learn everything he can. He is such a nice boy and already has manners! Tonight at dinner he asked for "more cheese" and then signed please afterwards! He is handsome and charming, and we are truly blessed to have a son as wonderful as he is!





Meet Quinn! He is 9 months old.

Biggest challenge Ds has brought to his family: The constant worry about medical issues. Every sniffle, sneeze and cough is a cause for concern, and this doesn't jive well with my laid-back personality.

Coolest thing about Quinn: His bright smiles! This kid can light up a room!

Quinn is also a Texas boy and I hope we get to meet him and Eli in the next two months when we travel down South! You can follow along with Quinn and his family here.





Meet Matthew! He is 19 months old.

Biggest challenge Ds has brought to his family: I'd have to say my biggest challenge with Down syndrome is patience. It's sometimes so hard for me to cope with delays in things--I've always been a go-go-go person. Matthew has taught me to slow down and not sweat the small stuff!

Coolest thing about Matthew: My biggest joy--that look in his eyes of pure love when he smiles at me!




Meet Brody! He is 18 months old.

Biggest challenge Ds has brought to his family: The health issues related to both his Down syndrome and his neutropenia.

Coolest thing about Brody: The joy, smiles, snuggles, fun, and laughter that Brody brings to our lives every day outweigh all the struggles that we have had thus far.

We had the pleasure of meeting Brody and his mommy when we went to Chicago this summer. He was the cutest little thing ever and was crawling around all over the place. Carter instantly took to him and played on the floor with him almost the whole time! 





Meet Giuliana! She is 13 months old.

Biggest challenge Ds has brought to her family: While most babies at 13 months of age are giving hugs and then scooting away to explore their worlds, Giuliana is giving hugs and holding on tight. These are the best hugs, but they make me feel happy and sad at the same time. I know I have a baby who LOVES LOVES LOVES me, but I also have a baby who is falling behind in gross-motor skills. I know she'll get there, so the challenge is to enjoy the moment and not think too far ahead.

We also got to meet Miss G and her entire family in Chicago. This girl is beautiful inside and out. She has such a contagious spirit! Her mom and dad were so kind to invite us over for a barbecue one evening after only meeting us that one time. This family is truly special. We loved every minute we spent with all of our friends up there and we hope to see them again! Check out Giuliana's Facebook page.


Wednesday, October 30, 2013

Day 30: Caj, Davis and Sophia

Meet Caj! He is 11 months old.

Biggest challenge Ds has brought to his family: The stigma and my worries for his future. One day he will stop being a cute baby and will become an adult. It scares me to think that he might not find a place outside of our family. I don't want him to be valued despite Down syndrome, but with it.

Coolest thing about Caj: This isn't about Down syndrome specifically, but I think the coolest thing about having a child with Down syndrome is the disability culture I've discovered. There is a whole community of people who live with disabilities who are fighting for a future in which my son is not only accepted, but celebrated. Being exposed to disability culture has been life-changing for us all. And it's cool that my son has an unprecedented love for anything sung by Barry White.

I connected with Caj's mom just a couple of months after Camden was born. We met on Babycenter and then we both ended up in the Rockin Moms group I often talk about. She has become a good friend of mine. Our boys are little Korean buddies from afar. She is also an excellent writer who writes about great topics and she is hilarious! She truly has a talent for it. Please go check out her blog.




Meet Davis! He is 20 months old.

Biggest challenge Ds has brought to his family: Overcoming negative societal views regarding Ds. But I like a good challenge! I'm always happy to let others know how awesome Davis is and how he is more like other kids than different.

Coolest thing about Davis: His incredible social skills--he's always willing to offer a "hi" and a smile to anyone!




Meet Sophia! She is 2 years and 4 months old.

Biggest challenge Ds has brought to her family: Her heart surgery at 13 weeks of age and being told she wasn't going to make it.

Coolest thing about Sophia: She makes everyone smile and has this infectious personality that makes everyone love her just as much as I do!




Monday, October 28, 2013

Day 29: Jordyn, Beatrice, Enzo

Meet Jordyn! She is 20 months old.

Biggest challenge Ds has brought to her family: Getting her motivated to crawl and walk. Like every stubborn child, she likes to do things on her own time.

Coolest thing about Jordyn: She's a very happy, smiley child. It is so contagious. Everyone loves her!

And also: Jordyn is a little actress/model. She was on Glee as Sue Sylvester's baby. She did print ads for Disney baby this year. And recently she participated in the Everybody Plays photo shoot for Infantino and Step 2.





Meet Beatrice! She is 2 1/2 years old.

Biggest challenge Ds has brought to her family: She is our fourth child, so fitting in all the therapy appointments is hard! She has a busier activity calendar than her three older brothers!

Coolest thing about Beatrice: She has taught us to live in today and soak up every moment. Life is not a race.





Meet Enzo! He is 27 months old.

Biggest challenge Ds has brought to his family: We have had medical challenges and developmental challenges, but who doesn't have that with their child, typical or special needs?

Coolest thing about Enzo: He was a miracle! A surprise! He is our first born and born with an extra-special chromosome of love! Enzo has a little brother, Eli, that he loves very much. We can see in Enzo's eyes that he can't wait for Eli to be big enough to play. Both boys are loved unconditionally! Enzo has his own page, at www.facebook.com/enzosentourage. This is a page to share with people what it is like to raise a child with Down syndrome. We feel the best way to spread awareness is by sharing our life. Had we known it was going to be so much fun, maybe we wouldn't have cried as much when we first found out that he had Down syndrome. Enzo is a handful, but we don't mind chasing him down. He has taught us so much, and we--yes, we, the parents--are continuing to learn so much from Enzo. What have we learned? Life is beautiful, and there is just so much love to share!








Day 28: Sibbie, Jonathan, Gracie

Meet Sibbie! She is 6 months old.

Biggest challenge Ds has brought to her family: So far, the hardest part of her having Ds is fitting in all of her therapy appointments. But that is a very tiny inconvenience in relation to the joy she brings to her big sister, daddy, and me!

Coolest thing about Sibbie: She is a very laid-back baby and lights up when she accomplishes new things. She was so excited the first time she sat by herself in her Bumbo seat!





Meet Jonathan Samuel! He is 14 months old.

Biggest challenge Ds has brought to his family: Our biggest challenge so far has been his eating issues. (He hates textures.) Otherwise, this kid is meeting all his milestones and even says "dada." We're working on "mama!"

Coolest thing about Jonathan: He has translocation Down syndrome, diagnosed prenatally, but he is just like any other baby - giggly, drooly, smiley! He is adored by all who meet him!





Meet Gracelynn (aka Gracie)! She is 20 months old.

Biggest challenge Ds has brought to her family: Open-heart surgery at almost nine months old.

Coolest thing about Gracie: She's so happy, smart, and funny. I love how quick she is to pick up on everything and her ever-changing, always-entertaining facial expressions. She's just beautiful!








Friday, October 25, 2013

Day 25: Rosalie and Ada

Meet Rosalie! She is 9 months old.

Biggest challenge Ds has brought to her family: The greatest challenge with Roaslie has been her medical issues--and we don't know whether they're Down syndrome-related or not. But the good has FAR outweighed the bad.

Coolest thing about Rosalie: In those first two weeks of Rosalie's life, we would rock her in the NICU, so unsure of what our future with her would be like. If I had only known... This child is the absolute light of our lives. There is no brighter smile or sweeter sound than her laugh. I wish everyone could experience what we have been blessed with. We are looking forward to watching this sweet child grow into a beautiful young woman!


Rosalie has neutropenia (a low neutrophil count which makes up the majority of your white blood cells). White blood cells are needed to fight off illness and infections. So, basically sweet Rosalie can get sick very easily, and when she does get sick it is harder to fight off the illness unlike you and I. I know that her family is working on finding out more answers in hopes of getting this treated and under control. Her mommy has to keep her inside the house pretty much all the time because of her increased risks of getting sick. I feel very attached to this sweet girl and I have not even met her in person. She holds a special place in my heart. You can follow Rosalie's journey here


Meet Ada! She is 9 months old.

Biggest challenge Ds has brought to her family: The biggest challenge has been that we've had to adjust to a busy life with therapy and other engagements/appointments, but that can also be fun!

Coolest thing about Ada: She and her brother had an instant sibling bond. They love each other and can constantly be found holding hands.



Miss Ada was also born with a cleft palate. This happens when the plates of the skull that form the hard palate (roof of the mouth) are not completely joined. This makes feeding difficult and therefore Ada has to use a special bottle right now. She will have surgery in the next year to have this repaired. I'm pretty fond of this little girl as well. She is an absolute doll! 



Thursday, October 24, 2013

Day 24: Otto and Nicholas

Meet Otto! He is 23 months old.

Biggest challenge Ds has brought to his family: I'd have to say life with Otto has been tremendously anticlimactic. We received our diagnosis after he was a day old, or rather our suspected diagnosis. But once your doctor says, "I think...blah blah blah...markers for Trisomy-21...blah blah blah...do you know what that is...blah blah blah," your mind goes a gazillion places, and let me say those places are not based in reality. Okay, that being said, heart surgery sucked. Seriously. It was a horrible thing to offer our sweet three month old over to have his little body cut open and his heart sewn up. There is nothing in the world like that. However, since that one thing, Otto has been tremendously run-of-the-mill. Yes, he's behind in gross motor skills. Yes, he's behind in fine motor skills. Yes, he's behind in speech. But so what? Does every kid do everything they are supposed to when they are supposed to? Nope. And you know what? Even though we supply Otto with the tools he needs to reach his goals as best he can, he's doing just fine. Is his weekly physical therapy helping? Is his weekly occupational therapy helping? What about the two days a week he goes to Early Intervention school? Yes, they are all helping. They are helping a lot. What exactly are they helping with? They are helping Otto to be the very best Otto he can be on the timetable that Otto needs. The Down syndrome diagnosis for us just meant we have a different kind of normal. We are still figuring out what that means and that is OK with us.

Coolest thing about Otto: Down syndrome. Trisomy-21. Developmentally delayed. These are just words. They have meaning but they don't define anyone. This is Otto. He is 23 months. He is awesome. He says two words clearly: yes and mom. He signs lots of words: banana, more, food, please, daddy, mommy (sometimes it's the same as daddy), no, cracker, hurt, fish, bye-bye, diaper. I must say that seeing him sign and be successful in communicating is the most awesome thing ever. He gets frustrated because he wants you to understand exactly what he wants. We have this fun game--or really not very fun and not much of a game, but it definitely is a back-and-forth that happens every day. He cries, or rather complains, and I guess what he wants. "Do you want water? Do you want milk?" (All the while signing.) He continues to fuss until I say whatever magic word he had in his mind. Usually it's milk or some sort of food. But tell me, how is that different from trying to figure out what any little person wants when they are too tired, too fussy, too young to tell you? You know what? It isn't.




Meet Nicholas! He is 18 months old.

Biggest challenge Ds has brought to his family: The biggest challenge we have had so far is the heart wrenching process of going through a prenatal diagnosis. These days, my main challenge is probably the mother-guilt associated with whether I'm doing enough to encourage his development! Now that we have this beautiful boy in our lives, though, we try to just enjoy each moment and face each day as it comes.

Coolest thing about Nicholas: His white-blonde hair, sparkly blue eyes, and big smile are pretty amazing. But I love watching the love between him and his two big brothers (who are 3 and 5). They absolutely love him to bits.



Monday, October 21, 2013

Day 23: Zachary

Meet Zachary! He just turned one year old!

Biggest challenge Ds has brought to his family: His open-heart surgery was definitely the biggest challenge, and other than coordinating and scheduling all of his therapies, there are no other real challenges.

Coolest thing about Zachary: His cheery disposition and his speech! As a mother of a 3.5 year old with a severe speech delay, the fact that Zac says "mama", "dada", "bye bye", and "mum mum" is absolutely amazing to me. Love this boy!


Day 22: Tobin

Meet Tobin! He is 18 months old.

Biggest challenge Ds has brought to his family: The biggest challenge we face with Down syndrome is allowing Tobin to achieve his milestones at his own pace, just like we would any of our other children.

Coolest thing about Tobin: The coolest thing about Tobin is that he is ours. When we recently learned of a family who received a birth diagnosis of Ds for their baby, my husband said, "Lucky them!"


Day 21: Kaitlin

Meet Kaitlin! She is 8 years old.

Biggest challenge Ds has brought to her family: Our biggest struggle related to Down syndrome right now is she knows that kids her age read and write! And she still struggles to write; it is very hard for her, and she works on this daily. She also doesn't read as well as them. (She is reading sight words, but just not the same books as most second-graders.) She wants to be just like them, invited over to play and to parties. She loves parties!! She understands and listens more than you realize. Her receptive language is about the same as most 7 to 8 year olds, but her expressive language is a few years behind. This makes it hard for friends, as some kids think she is a lot younger because she doesn't talk as clearly as them. You really have to listen to understand her, and if you ask her, she'll tell you if you got what she was saying or not.

Coolest thing about Kaitlin: If you've met Kaitlin, you can't forget her!! She is a fun-loving little girl who loves to play, swim, ride horses, and give full body hugs (that's what we call them.) When she hugs you, it's from her heart, and you can feel it. She loves people and always wants a party!! If it was up to her, we'd have a nonstop parade of friends and relatives visiting and sleeping over. She also loves to sing, especially in church! One of her favorite songs to sing is Building 429--"Where I Belong."


Day 21: Alaina

Meet Alaina! She is five years old.

Biggest challenge Ds has brought to her family: Finding times to take her to therapies between school and other things going on with my other two younger kids. I sometimes feel like they get neglected.

Coolest thing about Alaina: She is almost always happy. She definitely captures the hearts of everyone she is around. She absolutely loves school and has fun doing just about anything!! She is loving the hippotherapy she started this summer! And I have to add she's a pretty darn good big sister to her sister and brother.


Sunday, October 20, 2013

Day 20: Connor

Meet Connor! He is 9 months old.

Biggest challenge Ds has brought to his family: For me the biggest challenge has been making sure I am doing everything he needs. I guess scheduling his appointments and therapies, making sure I am up to date with all the new advances and paperwork. I feel like it's overwhelming at times. And finally, making sure his older brother is not feeling left out. Balancing everything is still a work in progress for me.

Coolest thing about Connor: EVERYTHING! I just love that kid to pieces, and I would not change a thing about him except maybe more sleep (ha ha!). I just love his eyes, his smile, and his pure joy for life. Watching him reach his milestones is just amazing and so exciting!


Saturday, October 19, 2013

Day 19: Eli

Meet Eli! He is 8 months old, and pictured here with his mom and his big sister, Ruby.

Biggest challenge Ds has brought to their family: I feel my biggest challenge thus far with Ds is the way that people look at you or look at my family. For me this has been hard. I'm not sure why and I have never been one to care what people think, but I feel like that has been hard--the judging before you know us. Other than that Eli is an absolute joy and a beautiful addition to our family! He brings lots of smiles!

Coolest thing about Eli: His sister's name is Ruby and she's 3.5 years old. These two kids are the light and joy of our lives!! Eli is a child who studies each and every face that he comes across, and once he feels comfortable with you, it is all smiles!!


Thursday, October 17, 2013

Day 18: Evan

Meet Evan! He is 10 months old.

Biggest challenge Ds has brought to his family: The hardest part is all the struggles we've had (with his medical issues and therapies), but he is a tough lil' cowboy! I wouldn't change one chromosome, but I wish we could catch a break. I know if he can handle it so can I, and later on in life he's going to show the world just how amazing being born with a little something extra can be.

Coolest thing about Evan: He has shown me just how strong I am and who truly matters/cares. He's helped me figure out what I want to do with my life. I'm so thankful for all the amazing people we've met through this journey he's taking me and my family on, and I hope he can look back later and see how loved he is by his T21 family!



We have gotten to know Evan and his mommy quite well over the last several months. I first met them while Evan was in the NICU. I knew from the moment I saw him that he was a fighter. He spent the first months of his life in the hospital undergoing two open heart surgeries and and a number of other surgeries. His mom and I have become good friends and I must tell you how incredibly awesome she is too. She's a single mother who works hard everyday to give everything to her two boys. She travels many hours several times a month to come here for doctor's appointments. Evan will have to have another open heart surgery sometime in the next year. I love this little boy and I keep praying that they can put all this medical stuff behind them soon. I know he and Camden will be the best of friends and I look forward to watching them grow up together! 

Day 17: Noah

Meet Noah! He is 15 months old.

Biggest challenge Ds has brought to his family: Self-feeding.

Coolest thing about Noah: He brings joy to our family with his big smiles!


Wednesday, October 16, 2013

Day 16: Ben

Meet Ben! He is 12 months old.

Biggest challenge Ds has brought to his family: Our family's biggest challenge is trying to juggle schedules, opportunities, and needs of all family members. Ben is the youngest of six kids and, thankfully, he's very healthy and easy-going. That can sometimes mean he doesn't get as much of mom's attention as he might in a smaller family. But, I'm pretty sure the love, entertainment, and stimulation from his siblings will make up for the missed therapy appointments. :)

Coolest thing about Ben: How mommy fixes everything! This kid loves ME! He also loves to interact with others--particularly kids--but whenever he cries (which is not very often) for whatever reason (hunger, pain, boredom, messy diaper), if I just pick him up his problem is solved. I love my little mommy's boy!


Tuesday, October 15, 2013

Day 15: Wyatt

Meet Wyatt! He is 16 months old.

Biggest challenge Ds has brought to his family: For me, it's the developmental delays. Most days I don't think much about Down syndrome, but occasionally it is hard seeing him so far behind other kids--not only his age, but kids who are younger than him, too.

Coolest thing about Wyatt: The best part about Wyatt is the mornings. Every morning when I wake him up, he is so happy and excited to face the day. It makes ME excited and happy to face the day.


Monday, October 14, 2013

Day 14: Matthew

Meet Matthew! He is 13 months old.

Biggest challenge Ds has brought to his family: Worrying that we're not doing something that will make a difference in his development. There are so many blogs and articles about what we should be doing that it can become overwhelming.

Coolest thing about Matthew: He has taught me to celebrate the small things. I get so excited whenever he does anything--big or small. I wish I had taken the time to do that with my other three children. I also LOVE his smile, his funny laugh, and all the sloppy kisses he gives me.


Sunday, October 13, 2013

Day 13: Ethan

Meet Ethan! He is 13 months old.

Biggest challenge Ds has brought to his family: Ethan was born with a congenital heart defect known as AVSD. He had a very difficult winter and could barely fight off the common cold. He spent a total of 50 days in the hospital. He stopped eating by mouth and got a NG tube (feeding tube in his nose). He had his heart repaired in February and then a belly surgery and a G-tube placed in April. Since then he has made leaps and bounds! He's finally drinking from a bottle, nearly all of his feeds. We are working closely with occupational, physical, and speech therapy. I want to give everything and more to both of my boys. I want Ethan to excel just like his older brother. There is nothing that holds us back.

Coolest thing about Etan: I love how excited he is to see me when I get home from work. He grins from ear to ear and just hoots and hollers. I love how much he is loved by our friends and family. We have a FB page I made for him when he was really sick.


Friday, October 11, 2013

Day 13: Michael

Meet Micheal, aka "Peanut Butter"! He is 14 months old.

Biggest challenge Ds has brought to his family: The lack of information and awareness about Ds. 

Coolest thing about Michael: It's hard to choose one, but I would say the joy and contagious happiness his presence brings!



Day 12: Thea

Meet Thea! She is 12 months old!

Biggest challenge Ds has brought to her family: The stigma; it breaks my heart that my child is put in a "category" just because she has an extra chromosome.

Coolest thing about Thea: Her incredible smile and how she is filled with joy.


Day 11: Bailee

Meet Bailee! She is 11 months old.

Biggest challenge Ds has brought to her family: Her open-heart surgery at five months of age.

Coolest thing about Bailee: Her infectious smile!






Thursday, October 10, 2013

Day 10: Sam

Meet Sam! He is 20 months old.

Biggest challenge Ds has brought to his family: The ever-present worry in the back of our minds over medical issues that come along with Ds.

Coolest thing about Sam: The way he approaches people with unbridled glee! He acts like any random person is his best friend in the whole world, and he smiles at them with his whole body and flirts shamelessly! His enthusiasm is contagious!



Sam's mommy is the one who came up with the great idea of sharing these beautiful babies daily for Ds awareness month. Who doesn't want to be bombarded with these cute little faces?! You can follow Sam's journey over here.

Tuesday, October 8, 2013

Day 9: Emilee

Meet Emilee! She just turned one year old! Happy Birthday Emilee!

Biggest challenge Ds has brought to her family: One of the hardest things for us has been her heart condition. She went through major open heart surgery that probably aged me [her mom] a good 10 years.

Coolest thing about Emilee: This girl is a firecracker; she's a rocket ship! Crawling, sitting, eating machine, this girl goes like the Energizer bunny, except way cuter! 



Day 8: Owen

Meet Owen! He is 9 months old.

Biggest challenge Ds has brought to his family: The inaccurate information about Ds in society. The expectations can be incredibly low, so we have made it a point to set our own path and let Owen be Owen. We will support him and guide him, and I cannot wait to see all the things he will accomplish throughout his lifetime!

Coolest thing about Owen: At almost 9 months, he is sporting his bottom two teeth! Also, he has great friends all around the world and his own FB page! How many people can say that?



Owen's mommy is pretty darn awesome too! She is the one responsible for starting our Rockin Moms group that I always talk about. She has created something truly special and these are ladies that I know will be lifelong friends. Also, I have had the pleasure of meeting this sweet boy and his family when we went to Chicago this summer. We hope to see them next year too! Check out his mom's blog to see more of this cutie pie and his family!

Monday, October 7, 2013

Day 7: Seth

Meet Seth! He is 20 months old.

Biggest challenge Ds has brought to his family: The frustration of not being able to communicate appropriately with him.

Coolest thing about Seth: He has the funniest personality, always making us laugh! He loves his family with unrestrained passion and he thrives on learning new things.


If you want to see more of this adorable little dude and his family hop on over to his mom's blog.

Sunday, October 6, 2013

Day 7: Alex

Meet Alex! He is 20 months old.

Biggest challenge Ds has brought to his family: Alex has faced a lot of health complications since being born but has always stayed strong and happy with each obstacle.

Coolest thing about Alex: He has taught everyone around him a lot about love and what's really important in life. He loves to have fun, blow bubbles, read books, dance, and play ball. He knows more than 30 signs that he uses to express his needs and wants. He is almost crawling. His family wouldn't change a thing about him.



Day 6: Aiden

Meet Aiden! He is four years old.

Biggest challenge Ds has brought to his family: Accepting that the world might not view our son like we do, as being a valuable person and perfect the way he is.

Coolest thing about Aiden: His cheeky, infectious, fun-loving personality that keeps us laughing all day long!


Saturday, October 5, 2013

Day 5: Rachel

Meet Rachel! She is 18 months old.

Biggest challenge Ds has brought to her family: 4 therapists, 3 doctors, 2 working parents and 1 busy older sister = scheduling nightmare.

Coolest thing about Rachel: She already has the most amazing problem-solving skills. She sees something she wants and often figures out how to get it!


Thursday, October 3, 2013

Day 4: Luca

Meet Luca! He had a birthday a couple of days ago and is now the big 1 year old!

Biggest challenge Ds has brought to his family: Ds brought his infantile spasms. 8-10% of children with Ds develop IS, and Luca is one of them. Seeing his developmental regressions, the loss of his smiles and laugh, and how much the spasms bother him have been tough for all of us.

Coolest thing about Luca: Luca is one tough kid who makes those around him better people by bringing out their inner compassion and empathy. He helps people slow down and realize what their true priorities are in life. And he makes some pretty sweet raspberries!



Some of you may remember that I mentioned Luca in a post a while back. Not only is he dealing with IS, but he is having other types of seizures on top of that. I remember Luca's mom saying that it was devastating watching her son just suddenly lose consciousness. They are trying a ketogenic diet to see if that will help with the spasms and they will see more specialists to hopefully find some answers. Please keep them in your prayers and you can read more about Luca's journey here.

Day 3: Eli

Meet Eli! He is 11 months old.

Biggest challenge Ds has brought to his family's life: The numerous health challenges and hospital stays he has faced in his short life.

Coolest thing about Eli: He smiles through any adversity. And his smile is contagious! 



I would like to tell you a little more about this sweet boy. He is a true warrior! He has already conquered open heart surgery and beat infantile spasms. He must now undergo another surgery tomorrow morning. He will have a cranial vault reconstruction because he has craniosynostosis. I ask that you say a prayer for sweet Eli and his family. I know he will rock this just like every other thing he has had to face in his first year of life. If you would like to follow along Eli's journey please go on over to his mommy's blog.

Wednesday, October 2, 2013

31 for 21

I remember reading some of the "31 for 21" blog posts last year after Camden was born.  At that time I never imagined I would have a blog, much less be participating in something like this. Well this year I'm going to try! October is Down syndrome awareness month.  There are 31 days in October and Trisomy 21 is 3 copies of the 21st chromosome. That is where "31 for 21" comes from.  So, the challenge is to blog every day in October to raise awareness for Down syndrome. You can get more details and find out how it all started here.

Yesterday was the 1st and I already shared my blog post about acceptance. What I want to do for the rest of the month is to let you all *meet* some of Camden's buddies.  One of my rockin mom friends had a great idea to share a picture and some info about our little ones every day of the month on her Facebook page.  I decided to join in and put them on here.  I figured people might get tired of me talking for 31 days straight so this is a way better idea! So, be ready to be bombarded with some serious cuties and probably some of my ramblings mixed in.






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Tuesday, October 1, 2013

Acceptance

Some people accept the diagnosis of Down syndrome immediately, and for some it takes weeks, months, and sometimes even years. A lot of you know that I did not accept the news after Camden was born very graciously. In fact, it was pretty ugly for me. The first few months were dark, scary, depressing and sad. I didn't laugh or smile. I just cried. There was no joy. My friends and family (not even Richard) knew what I was feeling. I had to be strong, because I knew everybody would follow my lead. Richard had accepted everything within a few short weeks, and at that point, I definitely didn't want to share my feelings with him because I did not want to take away his joy. I just felt alone.  A lot of people will say "if I knew then what I know now, it would have saved me a lot of tears". I don't feel that is true for me. I think I had to go through all of those emotions to come out on the other side. Once I started this blog I was able to share my feelings with friends, family, and even strangers. It was easier for me to write (or type) things out. I realized the more I opened up the better I felt. Then I started searching for others who understood what I was going through, because I no longer want to feel alone. I started to become part of an amazing community that I never knew existed. I began talking to, and sharing my feelings with these new friends. They saved me from spiraling even deeper into that dark place. Soon, I started to realize that my life was not over. I stopped hiding and being selfish and started to be present. I then saw that I had this tiny human being that I created lying next to me that needed me. So, I started to hold my head up, and started taking care of my family. With each passing day things got better. I fell more in love with my son and created an indescribable bond. I would still get sad, but it was not near to the magnitude of feelings I had in the beginning. Even though things were so much better, I realized that I still did not fully accept the fact that Camden has Down syndrome. A part of me still grieved that fact a bit, and I think a part of me was in denial. I just couldn't possibly believe that I had a son with special needs. I started to wonder if I would ever accept it. It would break my heart, because I knew if I couldn't accept that he had Ds, I wasn't fully accepting him. If I'm not fully accepting him, how could I continue to fight for society to accept him. I was a hypocrite.
 
Then over the last couple of weeks something started to change. I would look at Camden and just start to cry, but they were not tears of sadness, they were tears of joy. I started to see just how lucky and blessed I am and how much I love this little boy with all my heart no matter what. I started to feel lighter, as if a heavy load was taken off my shoulders. The other day he was taking a nap in my room and I came around the corner to check on him. He happened to be awake and when he saw me his face lit up with that cute smile of his and he reached his arms out to me. He had never done this before, so I wasn't quite sure if that's what he was trying to do. So, I went back around the corner, and then when I came back around, he looked at me with a huge smile and reached out to me again. I broke down in tears because that's when it hit me. Everything became so clear. I suppose I can sum up this whole post in one sentence.
 
 "Camden...I see YOU, and I fully accept every single ounce of you!"