Freya is allowed to roam free, make messes, watch and play with her siblings, interact with mom and I’m sure a lot more that we don’t see. That is all plenty of therapy. She’s trying to crawl and is very resourceful. You are doing great momma. You ensure she gets the therapy she needs outside of the home and that’s what matters. You’re doing the best for your families needs. May God give you plenty of years ahead for you and your family. God bless her, you and your beautiful family. 😊
I understand! My husband and I have 4 adult children from 23 - 33. Our 3rd child had a stroke at birth. He will always live with us. We have ups and downs every day. Thank God our 3 other children live very close & help with their brother when they can. But life is never easy when doctors tell you your child may not live. If he does he'll probably will never walk or talk. Praise God he lived, walks talks & function well considering a massive stroke at birth. I admire you and Sebastian's mom for sharing your family & life with others. I could never do that. Please raise your children the way you & your husband decide is best & disregard anyone or comment from people that DON'T HAVE A CLUE what your family is going through. You and your family are an inspiration to me! After almost 28 years of living life & loving a cognitively and physically disabled child I want to encourage you! You are doing an amazing job loving & caring for your precious family.
I love how open you are with sharing your emotions. Death is so hard to think about, and no matter how old we are, we are never ready to let go of our parents. And it's definitely hard to think about losing a child. I pray you and your family have many, many happy, healthy years together ❤️
None of us know when it's our time to go. We take one day at a time, and we are all here to serve a purpose. A friend of mine just lost her granddaughter, who was 6. She had MLD. My heart broke for the whole family. I'm actually making a tribute for Teagan's mom and dad, as well as both sets of grandparents. I'm 70 now, and I know my days are numbered as I have some medical issues. Take one day at a time and treasure all your time with your children, as they grow up way to fast.❤❤❤❤❤
When my oldest daughter was in kindergarten she brought home a poem with her handprint & photo as a Christmas gift. It permanently changed my housework priorities. BABIES DON'T KEEP Mother, O Mother, come shake out your cloth, Empty the dustpan, poison the moth, Hang out the washing, make up the bed, Sew on a button and butter the bread. Where is the mother whose house is so shocking? She’s up in the nursery, blissfully rocking. Oh, I’ve grown as shiftless as Little Boy Blue, Lullabye, rockabye, lullabye loo. Dishes are waiting and bills are past due Pat-a-cake, darling, and peek, peekaboo The shopping’s not done and there’s nothing for stew And out in the yard there’s a hullabaloo But I’m playing Kanga and this is my Roo Look! Aren’t his eyes the most wonderful hue? Lullabye, rockaby lullabye loo. The cleaning and scrubbing can wait till tomorrow But children grow up as I’ve learned to my sorrow. So quiet down cobwebs; Dust go to sleep! I’m rocking my baby and babies don’t keep. Author: Ruth Hulburt Hamilton
I could watch Freya all day long. Her smile just makes my day. It’s great that you can go to school and spend time with your kids. You are a great mom ❣️
I just adore Freya’s smile It lights up her whole face. I laughed out loud when she put the bean in her mouth for the 3rd time and then her impish smile. Talk about a perfect example of her strong will It’s ok to get emotional about the loss of our parents and wondering if we live past the age of our parent who died. And Freya’s who knows but you obviously enjoy every moment with her and she is living her best life. She is such a joy I appreciate that you r sharing that joy with us. TY Judy 15:11
Oh, Marci. Thank you for allowing yourself to vulnerable on your journal. I have no words. Just a hug from Minnesota. I know this is Your journal. I know of your feelings. My daughter lost a baby girl 15 years ago. She lived 26 hours. Tachycardia of the heart. My daughter still has days with that aching feeling. Love from Minnesota.🐄🐖🤗🍟
Hi Marci, your a wonderful mom! I know the pain your going through, I have days where it hits me and I have to bring myself back. My sister died when I was 9 and she was 13 from Reye's syndrome. My dad died when I was 22 and my mom died when I was 33. My granddaughter has down syndrome and were not sure about how long we'll have with her because of her medical issues. Sometimes it helps to know your not alone and were here for you. My love and prayers are with you.
I had to make a second comment, you are a great mother and you know exactly what you are doing with all of your children and I agree 100 percent on you wanting to be her mom which you can see how much she loves you and vice versa of course!
You can’t go through life with that dread of what if. It prevents enjoyment of here & now. What a gift and privilege it is to be Freya’s mama. Marci, you are a FANTASTIC mother. Enjoy each day to its fullest and when the day comes when one of your loved ones passes, (and if you’re still alive, cuz who knows) you will have a huge support network to help you through. I can relate….my nephew William had Downs Syndrome. He also had a heart murmur. He was 28 when he passed. He had Leukemia, which I found out later is very common in Downs kids. I had no idea. I know many Downs people who have lived into their late 50-60’s. It was a shock when we lost him. Every person is different, period. We never know for certain what each day holds. I have learned this one thing for sure, you can NEVER really prepare yourself for the loss of a loved one. You just can’t. Now that you have shared your beautiful family with so many of us, there is support that you can’t imagine! 😊 who knows, Freya could be an exception and out live us all!! Feel your feelings, they’re not right or wrong, they’re your feelings. Just don’t let any fretting ruin even one second of enjoying what gifts God has given you! Hugs!!
I accidentally found you, and just think you are such an amazing human. You are a wonderful Mom I can see it in the way you speak to your children. And you advocate for your little Freya. Remember to take time for you if possible.
I would love to have all the words that would convey how amazed I am at your patience and the fact that you know the boundaries between a mom first to all your kids but uniquely with Freya and not a caregiver, that is a gift. It was an emotional day and I am so pleased you didn't allow a not cleaned up kitchen to keep you and Freya from spending time with the siblings at school, you chose the best way and it will always bring you joy and great memories because you did. Each day is a reminder of how special our loved ones are, the loss of any of them will always bring us back to those special times when we could give them a hug, laugh and cry with them and oh yes, hear their voice. Thanks, Marci, you and each of the family are remembered in prayer every day. Thank you Jesse and Freya for sharing your mommy with us, she is pretty darn special.
We can't know it's best not to dwell on it at all. Maybe it's part of the reason why God gave cdls kids that super special smile and laugh that's so genuine, heartwarming and utterly unique to them. If you've seen those kids belly laughing you've seen a bit of heaven already.
CdLS does produce some of the most gorgeous eye lashes I have ever seen. This seems to be the most similar symptom I have noticed. I notice other physical factors or delays seems to vary greatly but those eye lashes, so beautiful. I found you and Freya from Stephanie and Sebastian.
Way to go Freya 😄👍!! I'm sorry for the loss of your MOM and his DAD 😟🙏!!!! It's great that you spent time with your kids 🙂🙏 Freya is doing so well ❤️🙏❤️🙏❤️🙏!!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️🙏!!!!!
I’m so sorry about your Mom and Chris’s Dad, Marci ❤ I lost my Mom 15 years ago, and my Dad almost 4 years ago. I know how much it hurts. Aww you are such a wonderful Mom to Freya and all of your children. I love that Jessie and Freya are so close. I’m so glad that you and Freya have a beautiful mother-daughter relationship. Such an inspiration! Sending you all of my love, hugs, and prayers. God bless you all! 🤗❤️🙏🏻🥰
You are an intuitively wise mom and woman. Keep those priorities in place ( forget the cleaning). Tomorrow, next week, next year- not one of you will think about housekeeping. Live where your love is. ❤️, a mom who has had to say goodbye.
I am completely with you...I would also choose "mommy" instead of caretaker, taskmaster, nurse, etc., and some might not understand but your feelings are 100% valid AND valuable for both you and Freya. I have difficulty reading some comments, even if they're not grotesquely mean spirited, I dislike the ones that carry judgement. I believe if you cannot be kind, be silent. I have 2 other amazing moms of children with complex medical needs that I enjoy watching here and I've grown to love them. Parents and children. It enriches my life to see their videos and now yours and Freya's. Thank you for sharing your life with us. ❤
Freyr is such a beautiful child and has her own personality. Please don’t try to change her. You are right your relationship is more important. From what I’ve seen she does more that most CDLS kids. Just enjoy her for who she is. Husband passed and some time I just need to cry. It’s a natural thing. You don’t need to apologize. Love you and family. The kids are great.
Isn't it amazing how spending some time with our kids can turn your frown upside down? We all think about death and it's one of the most difficult things to handle. I lost my husband and my mother 2 months apart, 19 years ago. My daughter was only 7 years old, very hard time for us. I learned to appreciate all those in my life. You have a beautiful family. Take some "me" time so you don't get drained. Thank you for sharing m g your lives with us!!❤
You are so sweet. I just love you to pieces. And, love your family. You are absolutely right about just being Mom to Freya. That’s all you have to do…blessings to you pretty lady 💜
I wish I had discovered much earlier to be Blair's mom and not a "drill master". She progressed very well at an expensive school but by the time she was going into "9th" grade we couldn't continue paying the high tuition because I have 2 other children that would need money to go to college. I have had those days, more frequent now as we reach each birthday about how much longer we have to love her and treat here just like any other kid. Blair is almost 39 and some days I worry I won't have her around much longer. When she was born, we were told CdLS kids didn't live past puberty. She has a real magical personality; she can be a real bee charmer! And she has such a wonderful sense of humor. I look forward to our days together even more now since my husband retired.
You think we live in a wonderful world? Sorry but look around you, in your country, and rest of the world and think again. The planet, entire population are near the end.
Mari thank you for being open and honest and not sugar coating everything. I lost my Mom less than a year ago and had a bad day last week. It's good to see another Mom in a similar situation. On a bright note I burst into laughter after you had removed the first 3 beans from Freya's mouth and she waited for the perfect moment looked right at the camera smiled and popped another one in her mouth😂. Oh one last thing my daughter wanted to tell Fiona Aliexpress has chicken helmets ⛑️. Seriously Annie said she has to see them a.s.a.p!
Are we even human if we don’t have those thoughts occasionally? You’re a strong person and I pray you’re blessed with many, many more years with your family.
People seem to want disabled people to do everything possible to be as normal as possible. I don't have anything like what Freya has but I had a lot of medical appointments as a child due to muscle and joint issues that I now know to be EDS. A lot of it was about getting my body to work normally not really about reducing pain or increasing function, I don't remember ever being asked what I wanted. I was made to wear rigid shoe inserts to correct my flat feet for a while. They forced my feet into an unnatural position which was really painful and did nothing to their shape. It's good Freya has really good support in her life.
Yes! I feel this a lot with physical therapy. They talk about doing things to help her walk. I always say “oh that’s not our goal. I bring her here to build muscle for whatever she wants to do”
Beautifully said about Freyas life expectancy & other things she enjoys going with her sister Jessie. Sensory play is very good with mist kids that have a disability or low muscle tone issues as well. Your a great parent to all ur kids!
Big big hugs. Everyday is a blessing. So wonderful that how you think of how to include everyone. If anyone of them were hurt all would Raley around each other beautiful. 1 for all n all for one big hugs. Freya has a beautiful smile.
Kids only stay young for a very short time. Never feel like you need to apologize for spending time with them. Houses can get clean any time . My daughter is 26, on the spectrum, married, and I still wished I spent more time with her. I was a stay at home mom but still wish I had . I love how you care so lovingly for your babies.
I was so sad with your last video. We are all here on earth. We know when we are born but we don’t know when it will be the end of our lives. Making memories is what’s important. I love how you show so much mommy love not only to Freya but to all your children. Blessings to your beautiful family ❤
Marci, I am so sorry for your loss. I lost my dad when I was 18 years old. I also wanted to say, WOW Freya is crawling! How exciting! You are such an amazing human and mom. I hope that you are not too hard on yourself. I see a beautiful family that is thriving, full of love, and happiness. ❤❤
You are a great mother enjoy your time with your kids. Don't worry about what mean people say. I just couldn't do what you do. You are lucky to have freya in your life. I look at your videos daily to see if you have any new ones, she just makes me smile... hugssss
As you well know, ya can't beat yourself up girl! I never got the chance to be a Mom but I have 3 babies waiting for on the other side, but I can kinda get it. People like to tell me that I should never comment since I never raised my children. I think about them EVERYday! YAY for Freya for crawling to that light! Those dimples and that smile! Freya and Sebastian have the cutest smiles! God Bless Marci..sending healing and positive vibes from Tennessee!😊
Thank you for sharing your emotional day. I'm sorry you lost your mom so young. You are giving Freya the best life she can have. Hopefully you both have many years to enjoy each other. Hugs
I’m so happy to see Freya crawling, another string in her bow so to speak. She seems to be getting stronger. I hope that you are feeling stronger soon.
You are a wonderful mum Marci ….. sorry for your losses & of course memories trigger current fears. Freya melts my heart ♥️ & Jess is a sweetie. Never could understand people feeling the need to mind someone else’s business. Lack of insight could be the reason🤔. Keep being you 💜
Yes we appreciate the transparency momma, that’s a real/rawness that most of social media is missing anymore. Also I just want to pinch Freyas little cheeks omg!
Freya is so adorable! I love her smile. All you can do is just love your family and live one day at a time. Dont focuse on the past and Dont keep trying to look in to the future just be in the now. You have a lovely family ❤
Thinking about death is extremely difficult. Life isn't fair and that's not always easy to accept in my opinion. Also, you are the Mom of your 4 dear children, you are a wonderful Mom, and no one else is in your shoes, even another Mom with a child who has CDLS has a completely different experience, so it always floors me when people make ridiculous comments. I am 57, I never married or had kids, I just never found the right guy. I'm no expert, but I have eyes to see what a great Mom you are, and sometimes it helps to just hear it. 👍
How Cool, Freya is crawling! Yippy! She is doing very well. Happy girl...❤.. I can understand your mood today..it is very hard loosing family members, especially parents. My mom died from cancer 11 years ago and I still miss her sooo badly...
0:59 Love you and your beautiful family ❤! Your strength amazes me. I have an adult son with Asperger Syndrome and now he has a son with same. It’s hard. My heart hurts. I am here for you. ❤
She is the sweetest baby girl. I so look forward to your daily videos. It’s ok to have a messy house. I would rather spend a happy day with my children than have a spotless house. A little mess never hurt anybody. I’m glad you have a group to discuss your feelings with. When I have a contemplative day I find a Root Beer Float always helps. Love to you all from Belleville Nj. 💋❤️🙋🏼💗💕
Best of luck to you! As a mom of a special needs child, I know how precious time with your children is. All we can do is live in the moment. I love my daughter and how special she is!
I totally understand. When my children were young I always prayed I wouldn't die when they were little because they wouldn't understand and it would traumatize them. Now I pray the same for my grandchildren. It's scary and overwhelming sometimes. And you know your child better than anyone. I love when people who don't know you or live with you think they know better than you do. 😅😅😅 You're a great Mom. Keep doing you!! Love to you all. ❤
Go, Freya, go! 💜 It’s always so sweet to see your kids playing together. You have such a beautiful heart, Marci. And what you said really resonated with me. The unknowns we live with sometimes demand us to sit with them for a while, which isn’t wrong or weird or negative-it’s simply human. It’s real life. I love how much you love your children and cherish the time you have with them. And you inspire me to be more intentional. This video is a perfect example: You didn’t stuff your feelings; you felt and expressed them and then intentionally chose to do something beautiful in response . What a wonderful life lesson. Your children are blessed to have you as their mom. ❤
5 months late here, BUT children learn the most through play and meaningful interactions! Formal therapy, while necessary for some kids, is adjunct: relationship is everything ❤
I enjoyed your entire video. I too, felt bad for not attending something with one of my children. You have the rest of their childhood ahead of you. Do the best that you can with that. ❤️ I really enjoyed Freya's crawling. She is a strong 💪 girl!!!
Sometimes you have to speak your mind no matter how hard it is. We are currently dealing with cancer. That goes in my husband's family, just heard my sister-in-law has breast cancer. And my husband lost both his parents to cancer. So yeah, you're going to have questions also with CDLS and I think it's hard to think about. I hope Freya may live happily ever after with you 🙏❤
I feel your grief, my mother passed away 3 weeks ago and my Dad is so sad and grieving because they were married 50 years this December, also we were given a update on my dad from his Doctor and we have learned about his health which is not good.and it’s about quality of life not quantity, he is suffering from vascular dimentia. Passing along a virtual hug and prayers for your d your beautiful family.
♥♥♥ My heart is with you. Watching you process the feelings and then pivoting back to the now by spending time with your kids is admirable and no small thing! I definitely just took a note from your book on that. I am not in your shoes and have no idea what that particular grief feels like but thank you for sharing - I’m tuning in every video and listening and learning. Ps - I LOVE when Freya’s feet move in those circles 😂
I love your videos. I hope you don't take too many comments to heart. I think you are doing marvelous. It takes a lot to open your life to social media. Thanks for being willing to share and educate me. ❤❤❤❤
Non of os is promised a long life so the only thing we can do is getting the best out of it. By the way I truly understand why you don’t try to make Freya therapy against her will, we were all born different, and every child will learn what she or he needs to learn in their own time. Most important is that she is happy little girl 🥰 big hugs and thank you for letting os in to your life 🥰
I worry about my grandson who has C.P we don’t know how long he has got with us, or for that matter how long I have got. It’s only natural to have these thoughts for a while it shows that you really care for your children, which I know you do, your job is so important those children are a credit to you. Take care X
We all have had our down days. There were times I didn't think I could go on, but somehow got thru it all. If I can do it, you can too! Love to you and your family.
Don’t worry about what other people say , you can tell that Freya has a very rich loving life ❤️❤️ I have a giant container filled with rice and measuring cups . I even love to play with it ❤️❤️
I'm sorry you're having a bad day. I'm sure it must be overwhelming at times and I can't pretend to understand what that's like but here's a BIG HUG and know you're in my prayers Marci and tomorrow's another day.
I would be terrified that Freya would accidentally breathe in one of those beans. You had just mentioned her narrow/small airways and if she did get one in her airways, it could be fatal. Please don't let her put them in her mouth.
Awww... so sorry it wasn't the best of days. Thoughts have you a little down (and you still manage to be absolutely gorgeous) I always tell my daughter isn't Marci so pretty/w her natural born accessories 👉dimples) passed them on to baby bears as well☺I bet the baby bears lifted your spirits in no time. They are so lovely to watch.
I’m with you thinking about time. It’s all guess work with our life span. I went through a difficult moment lasting days where my husband gone to work for twelve hours a day, I was worried that I was in the house all alone with two very young babies and what would happen if I died during those hours, what would happen to my babies. It was vivid for me at the time, thank goodness it didn’t last too long.
Freya is allowed to roam free, make messes, watch and play with her siblings, interact with mom and I’m sure a lot more that we don’t see. That is all plenty of therapy. She’s trying to crawl and is very resourceful. You are doing great momma. You ensure she gets the therapy she needs outside of the home and that’s what matters. You’re doing the best for your families needs. May God give you plenty of years ahead for you and your family. God bless her, you and your beautiful family. 😊
Thank you I agree
Freya is such a beautiful with such a very sweet demeanor. She is loved. You are blessed to have each other.❤
We are thank you
The sparkle in Freya’s eyes and big smile on her precious face when she heard the kids at the school was absolutely priceless! 😊❤
She loves people and especially her siblings
I understand!
My husband and I have 4 adult children from 23 - 33. Our 3rd child had a stroke at birth. He will always live with us. We have ups and downs every day. Thank God our 3 other children live very close & help with their brother when they can. But life is never easy when doctors tell you your child may not live. If he does he'll probably will never walk or talk. Praise God he lived, walks talks & function well considering a massive stroke at birth. I admire you and Sebastian's mom for sharing your family & life with others. I could never do that.
Please raise your children the way you & your husband decide is best & disregard anyone or comment from people that DON'T HAVE A CLUE what your family is going through. You and your family are an inspiration to me! After almost 28 years of living life & loving a cognitively and physically disabled child I want to encourage you! You are doing an amazing job loving & caring for your precious family.
Thank you so much! I’m so glad your son is doing well. And I do completely disregard what most people say 😂
Freya’s hair looks so adorable in the braids she’s a cutie be safe God bless
I love how open you are with sharing your emotions. Death is so hard to think about, and no matter how old we are, we are never ready to let go of our parents. And it's definitely hard to think about losing a child. I pray you and your family have many, many happy, healthy years together ❤️
Thank you
None of us know when it's our time to go. We take one day at a time, and we are all here to serve a purpose. A friend of mine just lost her granddaughter, who was 6. She had MLD. My heart broke for the whole family. I'm actually making a tribute for Teagan's mom and dad, as well as both sets of grandparents. I'm 70 now, and I know my days are numbered as I have some medical issues. Take one day at a time and treasure all your time with your children, as they grow up way to fast.❤❤❤❤❤
When my oldest daughter was in kindergarten she brought home a poem with her handprint & photo as a Christmas gift. It permanently changed my housework priorities.
BABIES DON'T KEEP
Mother, O Mother, come shake out your cloth,
Empty the dustpan, poison the moth,
Hang out the washing, make up the bed,
Sew on a button and butter the bread.
Where is the mother whose house is so shocking?
She’s up in the nursery, blissfully rocking.
Oh, I’ve grown as shiftless as Little Boy Blue,
Lullabye, rockabye, lullabye loo.
Dishes are waiting and bills are past due
Pat-a-cake, darling, and peek, peekaboo
The shopping’s not done and there’s nothing for stew
And out in the yard there’s a hullabaloo
But I’m playing Kanga and this is my Roo
Look! Aren’t his eyes the most wonderful hue?
Lullabye, rockaby lullabye loo.
The cleaning and scrubbing can wait till tomorrow
But children grow up as I’ve learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I’m rocking my baby and babies don’t keep.
Author: Ruth Hulburt Hamilton
That’s so beautiful
I keep Freya and your family in my prayers every single night! God bless you all!❤ I love her smile!
Thank you
I think your advise to enjoy everyday to its fullest is the best advise for everyone.
I could watch Freya all day long. Her smile just makes my day. It’s great that you can go to school and spend time with your kids. You are a great mom ❣️
All of your children are extraordinary and beautiful! I love your open, loving and supportive style of parenting! ❤
I just adore Freya’s smile It lights up her whole face. I laughed out loud when she put the bean in her mouth for the 3rd time and then her impish smile. Talk about a perfect example of her strong will It’s ok to get emotional about the loss of our parents and wondering if we live past the age of our parent who died. And Freya’s who knows but you obviously enjoy every moment with her and she is living her best life. She is such a joy I appreciate that you r sharing that joy with us. TY Judy 15:11
Oh, Marci. Thank you for allowing yourself to vulnerable on your journal. I have no words. Just a hug from Minnesota. I know this is Your journal. I know of your feelings. My daughter lost a baby girl 15 years ago. She lived 26 hours. Tachycardia of the heart. My daughter still has days with that aching feeling. Love from Minnesota.🐄🐖🤗🍟
I’m so sorry for you and your daughters loss. It is so hard
Hi Marci, your a wonderful mom! I know the pain your going through, I have days where it hits me and I have to bring myself back. My sister died when I was 9 and she was 13 from Reye's syndrome. My dad died when I was 22 and my mom died when I was 33. My granddaughter has down syndrome and were not sure about how long we'll have with her because of her medical issues. Sometimes it helps to know your not alone and were here for you. My love and prayers are with you.
Thank you.
I had to make a second comment, you are a great mother and you know exactly what you are doing with all of your children and I agree 100 percent on you wanting to be her mom which you can see how much she loves you and vice versa of course!
Thank you so much!
You can’t go through life with that dread of what if. It prevents enjoyment of here & now. What a gift and privilege it is to be Freya’s mama. Marci, you are a FANTASTIC mother. Enjoy each day to its fullest and when the day comes when one of your loved ones passes, (and if you’re still alive, cuz who knows) you will have a huge support network to help you through. I can relate….my nephew William had Downs Syndrome. He also had a heart murmur. He was 28 when he passed. He had Leukemia, which I found out later is very common in Downs kids. I had no idea. I know many Downs people who have lived into their late 50-60’s. It was a shock when we lost him. Every person is different, period. We never know for certain what each day holds. I have learned this one thing for sure, you can NEVER really prepare yourself for the loss of a loved one. You just can’t. Now that you have shared your beautiful family with so many of us, there is support that you can’t imagine! 😊 who knows, Freya could be an exception and out live us all!! Feel your feelings, they’re not right or wrong, they’re your feelings. Just don’t let any fretting ruin even one second of enjoying what gifts God has given you! Hugs!!
You’re doing an amazing job Momma. ❤ love your transparency and real talk. Thank you for sharing with all of us.
I accidentally found you, and just think you are such an amazing human. You are a wonderful Mom I can see it in the way you speak to your children. And you advocate for your little Freya. Remember to take time for you if possible.
I would love to have all the words that would convey how amazed I am at your patience and the fact that you know the boundaries between a mom first to all your kids but uniquely with Freya and not a caregiver, that is a gift. It was an emotional day and I am so pleased you didn't allow a not cleaned up kitchen to keep you and Freya from spending time with the siblings at school, you chose the best way and it will always bring you joy and great memories because you did. Each day is a reminder of how special our loved ones are, the loss of any of them will always bring us back to those special times when we could give them a hug, laugh and cry with them and oh yes, hear their voice. Thanks, Marci, you and each of the family are remembered in prayer every day. Thank you Jesse and Freya for sharing your mommy with us, she is pretty darn special.
Thank you so much
It’s awesome to see her crawling!❤️
We can't know it's best not to dwell on it at all. Maybe it's part of the reason why God gave cdls kids that super special smile and laugh that's so genuine, heartwarming and utterly unique to them. If you've seen those kids belly laughing you've seen a bit of heaven already.
CdLS does produce some of the most gorgeous eye lashes I have ever seen. This seems to be the most similar symptom I have noticed. I notice other physical factors or delays seems to vary greatly but those eye lashes, so beautiful. I found you and Freya from Stephanie and Sebastian.
The eyelashes and eyebrows are definitely across the board
Way to go Freya 😄👍!! I'm sorry for the loss of your MOM and his DAD 😟🙏!!!! It's great that you spent time with your kids 🙂🙏 Freya is doing so well ❤️🙏❤️🙏❤️🙏!!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️🙏!!!!!
I’m so sorry about your Mom and Chris’s Dad, Marci ❤ I lost my Mom 15 years ago, and my Dad almost 4 years ago. I know how much it hurts. Aww you are such a wonderful Mom to Freya and all of your children. I love that Jessie and Freya are so close. I’m so glad that you and Freya have a beautiful mother-daughter relationship. Such an inspiration! Sending you all of my love, hugs, and prayers. God bless you all! 🤗❤️🙏🏻🥰
Freya is such a pretty girl. Loved her smile. God bless your family.
Thank you
You are an intuitively wise mom and woman. Keep those priorities in place ( forget the cleaning). Tomorrow, next week, next year- not one of you will think about housekeeping. Live where your love is. ❤️, a mom who has had to say goodbye.
I am completely with you...I would also choose "mommy" instead of caretaker, taskmaster, nurse, etc., and some might not understand but your feelings are 100% valid AND valuable for both you and Freya. I have difficulty reading some comments, even if they're not grotesquely mean spirited, I dislike the ones that carry judgement. I believe if you cannot be kind, be silent. I have 2 other amazing moms of children with complex medical needs that I enjoy watching here and I've grown to love them. Parents and children. It enriches my life to see their videos and now yours and Freya's. Thank you for sharing your life with us. ❤
Yes I am her mother first. Glad you understand 💜
Freyr is such a beautiful child and has her own personality. Please don’t try to change her. You are right your relationship is more important.
From what I’ve seen she does more that most CDLS kids. Just enjoy her for who she is. Husband passed and some time I just need to cry. It’s
a natural thing. You don’t need to apologize. Love you and family. The kids are great.
Go Freya! How exciting to see her crawling😜
I know! She is getting pretty good at it
Isn't it amazing how spending some time with our kids can turn your frown upside down? We all think about death and it's one of the most difficult things to handle. I lost my husband and my mother 2 months apart, 19 years ago. My daughter was only 7 years old, very hard time for us. I learned to appreciate all those in my life. You have a beautiful family. Take some "me" time so you don't get drained. Thank you for sharing m g your lives with us!!❤
You are so sweet. I just love you to pieces. And, love your family. You are absolutely right about just being Mom to Freya. That’s all you have to do…blessings to you pretty lady 💜
Thank you
I wish I had discovered much earlier to be Blair's mom and not a "drill master". She progressed very well at an expensive school but by the time she was going into "9th" grade we couldn't continue paying the high tuition because I have 2 other children that would need money to go to college. I have had those days, more frequent now as we reach each birthday about how much longer we have to love her and treat here just like any other kid. Blair is almost 39 and some days I worry I won't have her around much longer. When she was born, we were told CdLS kids didn't live past puberty. She has a real magical personality; she can be a real bee charmer! And she has such a wonderful sense of humor. I look forward to our days together even more now since my husband retired.
39! Wow that’s amazing
None of us know when our last day on this wonderful world. We just pray it is Gods will to have a long happy life. !! Especially for our kiddos
But sadly some of us are guaranteed a shorter life
You think we live in a wonderful world? Sorry but look around you, in your country, and rest of the world and think again. The planet, entire population are near the end.
@@Loulou-sr3tk nice way to be negative
Not all of us had had Gods will extend to a long happy life especially for our kiddos. Think about the sensitivity level of what you post.
Mari thank you for being open and honest and not sugar coating everything. I lost my Mom less than a year ago and had a bad day last week. It's good to see another Mom in a similar situation. On a bright note I burst into laughter after you had removed the first 3 beans from Freya's mouth and she waited for the perfect moment looked right at the camera smiled and popped another one in her mouth😂. Oh one last thing my daughter wanted to tell Fiona Aliexpress has chicken helmets ⛑️. Seriously Annie said she has to see them a.s.a.p!
😂 chicken helmets?! And yes Freya knows what she is doing 😂
Yes, Freya did smile at her mom when she popped in the last one! You are doing a great job … Freya and her sister are doing just fine. ❤️🇨🇦
Are we even human if we don’t have those thoughts occasionally? You’re a strong person and I pray you’re blessed with many, many more years with your family.
Freya is absolutely beautiful. All your children r adorable. Cherish every day 💖
🙏🏼❤️You are an amazing mom!
Thank you
People seem to want disabled people to do everything possible to be as normal as possible. I don't have anything like what Freya has but I had a lot of medical appointments as a child due to muscle and joint issues that I now know to be EDS. A lot of it was about getting my body to work normally not really about reducing pain or increasing function, I don't remember ever being asked what I wanted. I was made to wear rigid shoe inserts to correct my flat feet for a while. They forced my feet into an unnatural position which was really painful and did nothing to their shape. It's good Freya has really good support in her life.
Yes! I feel this a lot with physical therapy. They talk about doing things to help her walk. I always say “oh that’s not our goal. I bring her here to build muscle for whatever she wants to do”
Beautifully said about Freyas life expectancy & other things she enjoys going with her sister Jessie. Sensory play is very good with mist kids that have a disability or low muscle tone issues as well. Your a great parent to all ur kids!
I like your thought process. Freya gets so much stimulation, excitement, exercise and encouragement. Keep on doing what you are doing
Thank you so much!
You have such a beautiful family. God bless you guys. Love you guys. 💜
Big big hugs. Everyday is a blessing. So wonderful that how you think of how to include everyone. If anyone of them were hurt all would Raley around each other beautiful. 1 for all n all for one big hugs. Freya has a beautiful smile.
Kids only stay young for a very short time. Never feel like you need to apologize for spending time with them. Houses can get clean any time . My daughter is 26, on the spectrum, married, and I still wished I spent more time with her. I was a stay at home mom but still wish I had . I love how you care so lovingly for your babies.
Thank you I agree
All moms go through what you are feeling. Bless you all and I love to watch your beautiful family.
I was so sad with your last video. We are all here on earth. We know when we are born but we don’t know when it will be the end of our lives. Making memories is what’s important. I love how you show so much mommy love not only to Freya but to all your children. Blessings to your beautiful family ❤
Marci, I am so sorry for your loss. I lost my dad when I was 18 years old. I also wanted to say, WOW Freya is crawling! How exciting! You are such an amazing human and mom. I hope that you are not too hard on yourself. I see a beautiful family that is thriving, full of love, and happiness. ❤❤
Thank you. She is doing amazing
@@Freyasluckyarm She sure is! ❤❤
You are a great mother enjoy your time with your kids. Don't worry about what mean people say. I just couldn't do what you do. You are lucky to have freya in your life. I look at your videos daily to see if you have any new ones, she just makes me smile... hugssss
Thank you for watching
Sending love to you! Thank you for sharing your life with us! 💜💜
Amen, I like your thinking about the Teachers. You are absolutely right. ❤️
Marci, you are a great mother and have a wonderful family❤️❤️❤️❤️❤️
Thank you
As you well know, ya can't beat yourself up girl! I never got the chance to be a Mom but I have 3 babies waiting for on the other side, but I can kinda get it. People like to tell me that I should never comment since I never raised my children. I think about them EVERYday! YAY for Freya for crawling to that light! Those dimples and that smile! Freya and Sebastian have the cutest smiles! God Bless Marci..sending healing and positive vibes from Tennessee!😊
Thank you
@@Freyasluckyarm you're welcome!
Thank you for sharing your emotional day. I'm sorry you lost your mom so young. You are giving Freya the best life she can have. Hopefully you both have many years to enjoy each other. Hugs
Really enjoyed watching Freya and part of your day! She has such a beautiful sweet smile !!
You are such a sweet, beautiful, great mommy. If only all kids could have a mom that cared as much as you do.💕💕
Thank you
I adore you. I feel the same way about my kiddos. ❤️ you are an angel momma Marci!
I’m so happy to see Freya crawling, another string in her bow so to speak. She seems to be getting stronger. I hope that you are feeling stronger soon.
You are a wonderful mum Marci ….. sorry for your losses & of course memories trigger current fears. Freya melts my heart ♥️ & Jess is a sweetie. Never could understand people feeling the need to mind someone else’s business. Lack of insight could be the reason🤔. Keep being you 💜
Yes we appreciate the transparency momma, that’s a real/rawness that most of social media is missing anymore. Also I just want to pinch Freyas little cheeks omg!
She has the best cheeks
When you teared up in the beginning it gave me goosebumps. Vulnerability is beautiful. 💕 I also watch Sebastian on Stephanie’s channel
Freya is so adorable! I love her smile. All you can do is just love your family and live one day at a time. Dont focuse on the past and Dont keep trying to look in to the future just be in the now. You have a lovely family ❤
Thinking about death is extremely difficult. Life isn't fair and that's not always easy to accept in my opinion. Also, you are the Mom of your 4 dear children, you are a wonderful Mom, and no one else is in your shoes, even another Mom with a child who has CDLS has a completely different experience, so it always floors me when people make ridiculous comments. I am 57, I never married or had kids, I just never found the right guy. I'm no expert, but I have eyes to see what a great Mom you are, and sometimes it helps to just hear it. 👍
How Cool, Freya is crawling! Yippy! She is doing very well. Happy girl...❤..
I can understand your mood today..it is very hard loosing family members, especially parents. My mom died from cancer 11 years ago and I still miss her sooo badly...
We shouldn’t have to loose our Moms
0:59 Love you and your beautiful family ❤! Your strength amazes me. I have an adult son with Asperger Syndrome and now he has a son with same. It’s hard. My heart hurts. I am here for you. ❤
She is the sweetest baby girl. I so look forward to your daily videos. It’s ok to have a messy house. I would rather spend a happy day with my children than have a spotless house. A little mess never hurt anybody. I’m glad you have a group to discuss your feelings with. When I have a contemplative day I find a Root Beer Float always helps. Love to you all from Belleville Nj. 💋❤️🙋🏼💗💕
Yummy sounds delicious
Best of luck to you! As a mom of a special needs child, I know how precious time with your children is. All we can do is live in the moment. I love my daughter and how special she is!
The best thing is to just enjoy the time we have with our loved ones. Hang in there and remember the good days.
Lovely kids and your hole family. ❤❤❤
I totally understand. When my children were young I always prayed I wouldn't die when they were little because they wouldn't understand and it would traumatize them. Now I pray the same for my grandchildren. It's scary and overwhelming sometimes. And you know your child better than anyone. I love when people who don't know you or live with you think they know better than you do. 😅😅😅 You're a great Mom. Keep doing you!! Love to you all. ❤
What you can be sure of, is that you provided God's little earth angel the best life any angel ever had. ❤❤❤
While Freya was putting a bean in her mouth, she was watching your reaction with a mischievous twinkle in her eyes. I was cracking up.
Oh yes. She knows 😂 she does it just to prove she is in charge
Go, Freya, go! 💜
It’s always so sweet to see your kids playing together.
You have such a beautiful heart, Marci. And what you said really resonated with me. The unknowns we live with sometimes demand us to sit with them for a while, which isn’t wrong or weird or negative-it’s simply human. It’s real life.
I love how much you love your children and cherish the time you have with them. And you inspire me to be more intentional. This video is a perfect example: You didn’t stuff your feelings; you felt and expressed them and then intentionally chose to do something beautiful in response . What a wonderful life lesson. Your children are blessed to have you as their mom. ❤
Thank you so much
Seeing her crawl is wonderful🎉
5 months late here, BUT children learn the most through play and meaningful interactions! Formal therapy, while necessary for some kids, is adjunct: relationship is everything ❤
I love that Freya has wonderful sisters who play with her!
She is precious.
Thank you for sharing your life with us. My kids were very independent also I saw it as a good thing and it was.
It is. Eventually. 😂 when they are toddlers it about kills you
I enjoyed your entire video. I too, felt bad for not attending something with one of my children. You have the rest of their childhood ahead of you. Do the best that you can with that. ❤️ I really enjoyed Freya's crawling. She is a strong 💪 girl!!!
She is doing great
Sometimes you have to speak your mind no matter how hard it is. We are currently dealing with cancer. That goes in my husband's family, just heard my sister-in-law has breast cancer. And my husband lost both his parents to cancer. So yeah, you're going to have questions also with CDLS and I think it's hard to think about. I hope Freya may live happily ever after with you 🙏❤
Thank you. I hope the same for your family.
Big gentle hugs ❤❤❤❤❤
I feel your grief, my mother passed away 3 weeks ago and my Dad is so sad and grieving because they were married 50 years this December, also we were given a update on my dad from his Doctor and we have learned about his health which is not good.and it’s about quality of life not quantity, he is suffering from vascular dimentia. Passing along a virtual hug and prayers for your d your beautiful family.
A virtual hug right back at you.
Little miss Smiley. So sweet.
♥♥♥ My heart is with you. Watching you process the feelings and then pivoting back to the now by spending time with your kids is admirable and no small thing! I definitely just took a note from your book on that. I am not in your shoes and have no idea what that particular grief feels like but thank you for sharing - I’m tuning in every video and listening and learning.
Ps - I LOVE when Freya’s feet move in those circles 😂
Thanks for watching. The feet circles is so cute! She has always done it. Like handflapping with her feet
@@Freyasluckyarm lol yes! She’s expressing herself from her hands to her toes, literally!
I love your videos. I hope you don't take too many comments to heart. I think you are doing marvelous. It takes a lot to open your life to social media. Thanks for being willing to share and educate me. ❤❤❤❤
I don’t. Just try to educate others with them
All your Kids are beautiful
Non of os is promised a long life so the only thing we can do is getting the best out of it. By the way I truly understand why you don’t try to make Freya therapy against her will, we were all born different, and every child will learn what she or he needs to learn in their own time. Most important is that she is happy little girl 🥰 big hugs and thank you for letting os in to your life 🥰
I worry about my grandson who has C.P we don’t know how long he has got with us, or for that matter how long I have got. It’s only natural to have these thoughts for a while it shows that you really care for your children, which I know you do, your job is so important those children are a credit to you. Take care X
We all have had our down days. There were times I didn't think I could go on, but somehow got thru it all. If I can do it, you can too! Love to you and your family.
Thank you
Don’t worry about what other people say , you can tell that Freya has a very rich loving life ❤️❤️ I have a giant container filled with rice and measuring cups . I even love to play with it ❤️❤️
It is quite relaxing.
I'm sorry you're having a bad day. I'm sure it must be overwhelming at times and I can't pretend to understand what that's like but here's a BIG HUG and know you're in my prayers Marci and tomorrow's another day.
Thank you
You are a great Mom. ❤
Oh thank you!
Freya is so adorable.. Robb Esq
Her smile 😊
Sending you heart hugs ❤🤗
Your a beautiful woman and mama wish there was more like u I know it must be hard to be in your shoes but you do it so well ❤❤❤
Thank you
I would be terrified that Freya would accidentally breathe in one of those beans. You had just mentioned her narrow/small airways and if she did get one in her airways, it could be fatal. Please don't let her put them in her mouth.
Fresh is soooo ADORABLE!! She makes me want to pick her up and snuggle her!!...🤗😉. I think you're doing a great job at being a mommy!!!!!!
Awww... so sorry it wasn't the best of days. Thoughts have you a little down (and you still manage to be absolutely gorgeous) I always tell my daughter isn't Marci so pretty/w her natural born accessories 👉dimples) passed them on to baby bears as well☺I bet the baby bears lifted your spirits in no time. They are so lovely to watch.
Thank you I love my dimples and am very pleased every child has them
I lost my dad in 2017 and my mom last year and yes I know how you feel still hurts a lot hon thanks for sharing your life with us
I’m sorry that is a lot at one time 💜
I’m with you thinking about time. It’s all guess work with our life span. I went through a difficult moment lasting days where my husband gone to work for twelve hours a day, I was worried that I was in the house all alone with two very young babies and what would happen if I died during those hours, what would happen to my babies. It was vivid for me at the time, thank goodness it didn’t last too long.
Thanks for this posting, on a positive note I love your haircut now
Thank you!