The upside of Cornelia de Lange Syndrome

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  • Опубліковано 31 жов 2024

КОМЕНТАРІ • 123

  • @sharonhl2575
    @sharonhl2575 6 місяців тому +12

    I love seeing Freya letting you know what she wants. She's a sweetheart & her giggles are the best. Thanks for sharing her with us. 😁🥰

  • @jennbeth1
    @jennbeth1 6 місяців тому +8

    I applaud you for looking for the positives. It can't be easy to have a child with CdLS. They have so many challenges.

  • @tracyfinch918
    @tracyfinch918 6 місяців тому +6

    Freya’s giggles are the cutest! 😂❤

  • @barbararose88
    @barbararose88 6 місяців тому +3

    I can relate so much when you see the positives! I have an adult son with multiple disabilities, and often I just see his smiles and his happiness despite his disabilities. He enjoys little things and his soul is happy.

  • @suemuster9826
    @suemuster9826 6 місяців тому +8

    I agree that cuteness overload. Freya makes my day complete. Thank you for sharing her story. ❤❤❤❤❤

  • @sallyp508
    @sallyp508 6 місяців тому +5

    Hi. I was wondering if you have watched the vlogs from All Kids Are Perfect? They are a group of Physiotherapists who work with young children who have many different disabilities. They seem to make amazing progress with the families they work with. Its been so nice to watch these children/toddlers learn to use their muscles so they can sit/stand and even start to walk. Some of the ones i've watched have been unable to hold their head up, but by the end of the week they can sit up!! Truly amazing ladies who work so hard to help these Special families!
    Sending lots of Love to Freya and all your family x

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому +4

      I haven’t watched it I will have to check it out

  • @ruthjosephson3102
    @ruthjosephson3102 6 місяців тому +3

    I am an 80 year old grandmother who has fallen in love with your family - especially Freya. I am grateful for my healthy children and grandchildren, but your video of finding the positive was very uplifting. Children grow up way too fast, and to have extra years of that cuddly infant stage is certainly something to appreciate and enjoy.

  • @mtrevino3993
    @mtrevino3993 6 місяців тому +8

    As always Ms. Marci thank you for teaching us about CDLS and letting us meet your great family. And that bye bye from Freya at the end just melted my heart!❤️

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      I love the bye. It is new and melts my heart too

  • @gailathomas5218
    @gailathomas5218 2 місяці тому +1

    I just love that little girl! It’s a joy to watch her develop and change!❤️

  • @Roro19609
    @Roro19609 6 місяців тому +5

    What an uplifting video. Freya is so blessed to have such an amazing mommy and your family is so blessed too. ❤ I loved seeing Freya learning so much. ❤

  • @hazeleyes2479
    @hazeleyes2479 6 місяців тому +4

    Those milestones hit different when you have a typically different child. Freya is such a beautiful girl and soul, enjoy all the victories big or small ❤

  • @klarasarosi8159
    @klarasarosi8159 3 місяці тому +1

    Hi marcy ever since i watched real life videos of families who gave CDLS children i think there must be lots of postive things about CDLS kids they teach and show everyone alot .how she sees the world and other people .got to love her very precious and beautiful .her unique features are special ..

  • @debbiedowd604
    @debbiedowd604 6 місяців тому +3

    That's cute because my kids love that if you grab them and kind of scared them they giggle and laugh

  • @SmilingBeaver-ou7nc
    @SmilingBeaver-ou7nc 6 місяців тому +3

    Beautiful Family. Freya has stole our hearts 💕

  • @sfields7593
    @sfields7593 6 місяців тому +2

    What a beautiful idea for a vlog - both for us, your audience, and for you too! Thanks for sharing Freya with us!

  • @susie934
    @susie934 6 місяців тому +3

    Freya's eyebrows are very similar to yours. I'm very envious of her eyelashes. Beautiful!

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому +1

      They are. With just a little more oomph

  • @judithburdine4910
    @judithburdine4910 Місяць тому +1

    Every time you scare Freya I jump too

  • @christahodge6023
    @christahodge6023 6 місяців тому +2

    Freya is so cute and smart. Thanks for sharing.

  • @suegibson1960
    @suegibson1960 2 місяці тому +1

    Great sense of humor !

  • @lindasprettypressons
    @lindasprettypressons 6 місяців тому +4

    I love Freya’s laugh 💜

  • @marciac7457
    @marciac7457 6 місяців тому +2

    I love this. So beautifully done. Freya is a blessing. She makes all of us stop and realize how beautiful life is, even if it is hindered with problems.

  • @hildacardenas-cn2pu
    @hildacardenas-cn2pu 6 місяців тому +3

    She is so adorable and cute. She’s always been pretty as a baby and now.🌻💜💜💜💜💜💜

  • @beckyrhodes8280
    @beckyrhodes8280 6 місяців тому +3

    Freya is a sweet heart ❤️🥰❤️🥰!! It's good that she can tell you what she wants 😊❤ She's so lucky that she has y'all for her Family ❤😊❤😊 she's a doll ❤❤😊 thanks for sharing 😊❤ HAVE A BLESS DAY TO YOU And YOUR FAMILY ❤😊❤🙏🙏🙏🥰❤️🥰🙏🙏!!!!!!!

  • @nikkilambert406
    @nikkilambert406 6 місяців тому +2

    Cuteness overload!!!! Easily could be a three-hour video, and it's definitely one of my favorite videos!!! ❤❤❤❤❤❤❤

  • @BrendaEaster-c8k
    @BrendaEaster-c8k 6 місяців тому +1

    I can totally relate! The downside is the emotional rollercoaster as a parent of a special needs child. My SNC is already 35. She is a joy, with a hot temper and very particular about her room, what she wears, etc. She does not speak but can win arguments with her verbal brother! I love my daughter more than ever, but we did have our bumps. I was in denial when she was born and more when she was diagnosed at 9 months. I spiraled into a horrible depression for the better part of 5 years. Thank God she was provided with all day care in Stockton. We had a wonderful caregiver that passed two years ago and it broke my heart as she was my daughter's second mother when I separated from her father. Keep up the good work, the rewards will far outweigh the burdens.

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      I’m so sorry you lost your caregiver. They are like family

  • @TrishaPoeta
    @TrishaPoeta 6 місяців тому +2

    Thank you for sharing Freya with us! I love watching her grow and learning important lessons from her. For example ahe dinds things we take for granted beautiful. Like light on the water, how green the trees and grass are. I don't take things for granted anymore. I appreciate and thank God for letting my husband and fur babies me too for waking up in the morning. Thank you Marci♥️

  • @dollfactory
    @dollfactory 6 місяців тому +2

    Freya has stunning feature. I just know she gets looks from everybody when she's out. So pretty and tiny. 😊❤ Thank You Marci for another fun vlog!!

  • @lilyk1231
    @lilyk1231 6 місяців тому +2

    Always look on the bright side of life, such a blessing.

  • @susanh3342
    @susanh3342 6 місяців тому +3

    Freya is an absolute angel. 😊❤ I have to add Marci. You are an incredible Mom😊❤❤

  • @holliecrawford8327
    @holliecrawford8327 6 місяців тому +2

    Love her little belly giggles 😍

  • @CFetter1
    @CFetter1 6 місяців тому +1

    Love Freya and your family! So uplifting! I raised a daughter with Epilepsy and know some of the stress you must be under.❤

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      Oh wow! Yes epilepsy added a lot of stress

  • @betsybabf748
    @betsybabf748 6 місяців тому +2

    Freya has such a silly personality. She definitely loves to laugh.

  • @tinas2597
    @tinas2597 6 місяців тому +1

    I love this video. I have always been impressed with Freya's observation of our world! Such a special little girl! ❤

  • @NANAOF252
    @NANAOF252 6 місяців тому +1

    Marci i want to thank you for sharing your life and your family with us Freya is truly a blessing and I will keep you and your family in ny prayers

  • @lisaslittlecritters
    @lisaslittlecritters 6 місяців тому +1

    Loved this, more people need to look at the positives in life, and Freya is a joy to watch.

  • @trish7080
    @trish7080 6 місяців тому +1

    She is so cute 🥰 her and Sebastian are absolutely adorable ❤❤

  • @colleenford5398
    @colleenford5398 6 місяців тому +1

    I love how she's telling you exactly wants from you...without speaking. She's a treasure, and she's definitely made me look at people or situations differently, in a good way. I remember the day when you showed her scrambling up the stairs... definitely made me 😀

  • @teresaalemhoca9497
    @teresaalemhoca9497 6 місяців тому +1

    You are a good mama,love that little Freya.she always smiles n it lights up her face.pretty girl n she is doing great to me,love her 🤩

  • @elliegoldie6140
    @elliegoldie6140 6 місяців тому +2

    Freya is beautiful and all her siblings.x❤

  • @mj-ox8ky
    @mj-ox8ky 6 місяців тому +1

    She is precious...xx

  • @Mari-ek7su
    @Mari-ek7su 6 місяців тому +1

    Sweetest giggles!!🌻💜

  • @karifredrikson-lr1mm
    @karifredrikson-lr1mm 6 місяців тому +1

    OHHH Thank you for this Happy, Delightful Video!

  • @kathryndomer2109
    @kathryndomer2109 6 місяців тому +1

    Hi Marcie and Freya, absolutely loved this Video. It made me smile. Have a great rest of you day. Love you all, me 😉❤️💋🙋🏼

  • @karenligus8224
    @karenligus8224 6 місяців тому +1

    To allow yourself to see the world through the eyes of a child is so magical. With Freya, it's even more special! They find wonder in the smallest things. I sat on my sidewalk with my 2 yr old grand daughter watching a worm try to get to the grass. Then she told me a story about what the worm was doing when he got home. She was fascinated by it.....just melted my heart! ❤

  • @lynda2023
    @lynda2023 6 місяців тому +1

    😊lots of ❤❤❤❤❤❤❤❤❤from the UK xxxxx

  • @biddiemutter3481
    @biddiemutter3481 6 місяців тому +1

    She is thoroughly adorable! And seeing the earlier pictures, I can see how Freya has put on weight... in a very healthy, good way...!

  • @Alwaysherethere
    @Alwaysherethere 6 місяців тому +3

    She's a cutie!❤

  • @melodysmithey3172
    @melodysmithey3172 6 місяців тому +2

    Oh that little wave was soo sweet

  • @DianeLee-je7jm
    @DianeLee-je7jm 6 місяців тому +1

    You are also raising children with an awareness, knowledge and understanding of differently abled people. Our world so needs this ✨ and they in turn will go on to teach others.

  • @beckylindvall5801
    @beckylindvall5801 6 місяців тому +1

    Freya is a beautiful blessing.

  • @a.life.reimagined
    @a.life.reimagined 6 місяців тому +1

    She's a little happy baby. ❤❤❤

  • @Piperdaisy23
    @Piperdaisy23 6 місяців тому +1

    Love love love this! ❤❤❤

  • @debbiedowd604
    @debbiedowd604 6 місяців тому +1

    Awe to cute and that is very true about her even like you but her too with the eyelashes the eyebrows yeah people pay for that amazing

  • @KevieG
    @KevieG 6 місяців тому +1

    Freya is a blessing to the world!

  • @kat1368
    @kat1368 6 місяців тому +1

    I love all the baby pictures so precious . I loved her birthday cake so cute. Great job mama ❤ She is signing more how awesome ❤ Her joy is so contagious. She always makes me laugh and smile and I only see her just a tiny amount of time. My cheeks would permanently hurt if I was around her all the time. I love how she looks at you all and how she interacts with everyone. Has she found any new foods she likes yet?

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      She loved the string cheese but just to play with. Not to eat 😂

    • @kat1368
      @kat1368 6 місяців тому +1

      @@Freyasluckyarm String cheese is definitely fun to play with so are fruit roll ups. I loved both of those growing up😂

  • @heleenzuidhof8780
    @heleenzuidhof8780 6 місяців тому +1

    Perfect!. I need some up sides also. There is not only bad things on having a syndrome. Very good you also point out the good things .

    • @heleenzuidhof8780
      @heleenzuidhof8780 6 місяців тому +1

      I am in a depressive state at the moment, luckely i can talk with my practice nurse tomorrow. She understands me. I am so happy to find you and Stephanie. You guys are always so positive and give me positive vibes. I can learn a lot from you guys. That is also why i decided to follow you, because i also have a syndrome, not the same but i recognize a lot of what you guys are dealing with.

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому +1

      I hope your nurse can help. Depression sucks 💜

  • @crystalIzed333
    @crystalIzed333 6 місяців тому +1

    She is just growing up in front of our eyes!

  • @trish7080
    @trish7080 6 місяців тому +1

    Good morning Marcie & Freya❤❤

  • @bencaldecott6583
    @bencaldecott6583 6 місяців тому +1

    Hey. New subscriber from ON, CANADA

  • @KeepingItHopeful
    @KeepingItHopeful 6 місяців тому +1

    Such a sweet video. 🥹

  • @sabrina19ization
    @sabrina19ization 5 місяців тому +1

    Beautiful ❤❤❤❤❤

  • @veronicaGee90
    @veronicaGee90 6 місяців тому +2

    CdLS still continues to be a very rare syndrome. My sister was born with it she was just under 4 lb. She passed away 2 years ago lived for 37 years

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      Wow! 37! I’m so sorry she couldn’t be here longer

  • @pattijareo7423
    @pattijareo7423 6 місяців тому +1

    💕💕💕

  • @micheledavis3735
    @micheledavis3735 6 місяців тому +1

    She's so stinkin' cute and she's smarter "than the average bear"...my dad used to say that to me when I was little. It was a funny, actually the highest compliment and it's how I mean it, too! Someone in Georgia loves "Ya"!🩵💞
    I just had to rewatch this one!

  • @suegibson1960
    @suegibson1960 2 місяці тому +1

    She did it - waved good bye!!!

    • @Freyasluckyarm
      @Freyasluckyarm  2 місяці тому

      She is doing this about half the time. So cute

  • @biddiemutter3481
    @biddiemutter3481 6 місяців тому +1

    8:42 bye bye camera ❤ bye bye Freya and love to all of you

  • @ЕвгенияОлемская-х5н
    @ЕвгенияОлемская-х5н 6 місяців тому +1

    У Фреи такие щёчки прикольные.

  • @DKO666
    @DKO666 6 місяців тому +2

  • @1999nathanule
    @1999nathanule 6 місяців тому

    How does god do it ,he knows exactly which family these beautiful babies are to be born into ,where they will receive the greatest amount of love, attention and care ,how does he do it ,he's amazing

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      Unfortunately that is not always the case. I have taken care of many disabled children in the hospital that were not given the care they needed. We are just lucky we have Freya

  • @mariajesusmorales6121
    @mariajesusmorales6121 6 місяців тому +1

    💌

  • @RtNutlai
    @RtNutlai 5 місяців тому +1

    Hi,she's a cute girl.How old is she?I have a daughter with Cdls too.

    • @Freyasluckyarm
      @Freyasluckyarm  5 місяців тому +1

      She will be 5 in august

    • @RtNutlai
      @RtNutlai 5 місяців тому +1

      My daughter also turns 5 in january this year.

    • @Freyasluckyarm
      @Freyasluckyarm  5 місяців тому

      @@RtNutlai that’s amazing! So close in age

  • @biddiemutter3481
    @biddiemutter3481 6 місяців тому +1

    7:11 was she using a sign there, for scare?

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому +1

      I have occasionally used the sign for scare. I think she was just doing the motion of me grabbing her

  • @Bellakania520
    @Bellakania520 Місяць тому

    How tall is Freya?
    How much does she weigh

  • @Emptynestballerina1
    @Emptynestballerina1 6 місяців тому +1

    Lovey

  • @andreacarlile-thompson2511
    @andreacarlile-thompson2511 6 місяців тому +1

    Did you have heartburn while Freya was in utero, considering how much hair she was born with?

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому +1

      I actually didn’t more than usual

  • @alyssachestnutt4833
    @alyssachestnutt4833 6 місяців тому +1

    What do you and your family eat for desserts

    • @Freyasluckyarm
      @Freyasluckyarm  6 місяців тому

      Peach cobbler brownies cookies ice cream. I’m more of a salty person and would take popcorn anyday

    • @alyssachestnutt4833
      @alyssachestnutt4833 6 місяців тому +1

      @@Freyasluckyarm those are delicious

  • @cristinavelasco9818
    @cristinavelasco9818 5 місяців тому +1

    ❤🎉🎉❤😅😂

  • @puntinprincess7343
    @puntinprincess7343 6 місяців тому +1

    Just adore her!!!

  • @valtracey326
    @valtracey326 6 місяців тому +1

    ♥️