Hi Marci, I have been disabled since birth and am now in my 60’s. The grief process is hard for all of us, including those of us that have all, or most of our intellectual faculties. And, you are absolutely right, we can have more than one emotion that relates to disability. I actually just wrote a blog on grief and disability (not posted yet, will be this week), so that able-bodied people who don’t have understanding or connection to disability might better understand how grief affects us. It’s the gift that keeps on giving. The grief never goes away it’s always simmering under the surface, especially if we have the type of disability that progressively changes and deteriorates. I know how my parents are still affected by the changes I go through, as well as my husband and my kids and grandkids. It becomes a constant reminder of what could have been…of our dreams unfulfilled, our parents hopes and dreams for our lives. You are an incredible mom and you have absolutely beautiful, compassionate children. The one aspect that you may not see for yourself that others may or may not pick up on from the outside looking in, is that you have an incredible sense of intuition with Freya. I see you pick up on subtle nuances of her changes to notice when something isn’t “normal” or just not quite right with Freya. While she may never be “normal” (I personally hate that word), she has her own way of communicating and learning. If you look back at some of your videos from the beginning of your channel to now, you will see how much Freya has grown into her own person, how much she has learned, and how beautifully her little personality has developed. It’s a blessing to see, maybe you all just need to see it again as a reminder. She has so much to offer, so much joy to share, and so much love that is evident in every smile. Again, I completely understand the grief aspect, I just don’t want you all to miss the blessing and I know you don’t take one minute for granted! Sending love and heart hugs! xo Angel
Marcie, you make sense! Of course you all love Freya as she is. But if things could be different, yes you'd want her to be able to run around with her siblings, eat anything she wanted, tell you about her day. Instead, you read her cues and make her comfortable, love her and accept her! I guess I never thought about what her siblings would want for her. Thank you for sharing. I think you do a great job with all your kids and am so glad you have Chris to talk with and help out. Love you all ❤
Today’s episode is a real tearjerker. One benefit of Freya’s condition is that she can just be. She’s unaware that she’s different. I have a minor physical flaw that has impacted me all my life. I was teased in my youth and filled with shame. Now as an old lady, I’m just grateful for my health as well as many other blessings.
You don’t need to explain your feelings. You, Chris and the 3 kids are doing the best you can for Fryea. Please don’t beat yourself up but as a caregiver of a loved one, I completely understand your frustration and sense of thinking there is more you could do. You are normal with normal feelings but thanks for sharing. Blessings.
I can’t even imagine how hard it must be for everyone. She is amazing and you are all doing a great job with her. It can be frustrating for us with typical developmental children to deal with issues that are beyond our control. 💜
Thank you for sharing this ❤ I loved learning more about the NIBPL gene, that was very helpful (that’s the same gene that Ruth’s mutation is on). And thank you putting words to that tension of joy and grief. I am feeling that a lot lately about Ruthie. We adore her so much just as she is, and also grieve what is broken. Thanks for being brave and sharing on this platform, it helps me feel not so alone!
What a beautiful video, Marci and you explain it so well. Of course you can have those feelings and those who make the comments beginning with, “but” have not lived your life. Love to you all ❤
Maybe the word you're looking for is "bifurcation" but that's splitting into 2 parts. I hope Freya is ok and not getting sick. 🌞. I am so heartbroken for you all. I love that you're all are able to be honest and willing to share it.
It would be impossible not to have conflicting feelings. You want the very best for Freya and it is not fair that life has to be more challenging for her. You are such a good Mom in that you let your kids voice their thoughts and feelings and validate them. It is so much better for them to be able to say what they are thinking and have you to help them process. Although I am sure it is hard for you to hear at times too. It is so obvious from your videos how much joy Freya brings your family....and all your viewers. Her smile lights up the room for sure!!
Oh my goodness, was Freya signing"more". She really liked that head massage. Marci, you are a beautiful, wonderful mom to all of your family. God bless you all❤
Please be kind to yourself and the rest of the family, Freya's condition was not what you or your family expected or wanted, But the different path that you are now on, has its joys and its challenges, as all children do. You are doing an amazing job :D
We have very little control over our feelings and emotions. They are what they are, and what we need from others is validation. I understand and I feel sad, too. You are a great mom for validating the feeling Freya’s sibling have. Just to be understood is so important.
My grandson has a disability also I can relate to dealing with grief. My grandson is nonverbal. He can’t always tell us but we learn to communicate with his body cues
My heart goes out to you I understand how hard it must be and you are allowed to have your feelings. Please know that you are a fantastic mother to all your children
I love to see her signing and communicating with you. I understand the grief you have. Dichotomous feelings are difficult and the hardest to talk about and deal with. You are absolutely correct in saying that is possible to have more than one emotion at the same time and I applaud you for being able to acknowledge that and process it. You are a courageous person even. Though you probably don’t feel like you are in the midst of this specific emotional storm. Something that comforts me and also drives me to distraction is that everything is constantly changing, with me having very little control over it. It comforts me because I know that everything changes and I can stop and wait knowing it will change. Sort of “this too shall pass.” Thank you for sharing… it helps me to know how to pray for you and your family. I love you all.
Thank you for the biology explanation... whenever I hear a medical parent talk about it, it sounds sometimes as though they are experts... I am glad that I am not alone in the still learning! Xx
I am so inspired by you and your journey! Your story and emotions are so real and the fact that you share so openly are your gifts to the rest of the world. Acknowledging that grief is so vital for all of you. Voice your thoughts-many of us are listening with all of our hearts. You’re in my prayers and thoughts. Georgia
Marcie, give yourself grace, sweetie. You are doing a magnificent job & certainly it’s FAR FROM EASY. You are allowed your hard, ambivalent, feelings. You always come across so up. It’s ok to be frustrated, tired, guilty, sad and mad. God knew exactly what he was doing creating your family. You’re a good mama 💞. Believe it!
The gene change is pretty well explained as a parent ,to the rest of us ,not easy to get ceetain things across ,cause not all educated in these gene changes .So good one for doing so as much as you could 👍😌
You're such a good mom❤. As hard as this is ....and it is....she is such an awesome kid in spite of her syndrome. Your family is amazing. Glad shes feeling better.
That one popped on my feed, too. Fascinating. Marci, you are an amazing mother!! I, too, have four children, my youngest t being an iud baby and born at 27.5 weeks. He is now 19 and thriving. I am grateful for you, Chris, and each of your children. Please, vent away! Give voice to your frustrations, we weren’t made to shoulder burdens alone. You and your family are in my prayers.
I hope Freya feels better soon. I never thought of all your wishes before. As a mom and grandma, I get it. I wish my daughter never moved so I could spend time with my grandchildren. I have health issues and can't go through the Rockies to get to California. Yes, I live east of the Rockies. Love your family❤❤❤❤
Thank you so much for sharing, Marci. My cousin and I both have a genetic change of unknown specificity. It's just one base pair that codes for the wrong amino acid in that particular protein but the change must be recessive because it doesn't seem to cause any disease. Probably those random changes happen all the time but we don't know about them. Since Freya's random gene change is dominant, she has this rare syndrome. I know how much you all love Freya but how much you all wish that she could communicate with you. Your family is wonderful in the way you handle her disability and how you all love each other. God bless you all. ❤
Wow!! Thank you for sharing the science behind Cornelia De Lange! I work in healthcare, not a frontline worker, more behind the scenes, so this really connected the missing pieces for me. You’re an amazing Mom, I love watching you with your kids, how you adapt to each child’s personality and needs. Thanks for sharing with us. ❤
You are such a wonderful mom. It’s ok to have those feelings, I understand them completely. I also have a challenged child. All I want is their happiness.
Yes to all of this. Thank you for explaining the biology of her diagnosis. And If you don’t hear “but she’s so cute”, then it’s “well at least…” which doesn’t help either 😵💫
Marcy I totally understand where you’re coming from. I’ve been disabled all my life and as I can communicate it’s still so so hard. So I get where you’re coming from. I do want to let you know that you and your husband and other kids are doing great.. but I do totally get where you’re coming from.
Thank you for explaining this .and being so honest, you don't hear that much. Most don't talk about these feelings but I'm sure they have them. Hopefully It will make people see they are not alone... You are an amazing mom and have an amazing family. Bottom line , we love our kids no matter what , that doesn't mean that it can be hard sometimes. ❤
As soon as i finished watching your video , the next thing that came up was the video you, i think was talking about. The 18 year old girl named Georgia? 30 inches tall ? What a beautiful young lady , my heart broke for all the pain she has all day.
Freya is an amazing little girl, but you have every right to acknowledge the hard. You love her and you don't want to watch someone you love struggle with things that come so easily to her typically developing peers. I love someone who is medically complex too, and I would NEVER want to change the beautiful person that she is, but that doesn't mean I can't absolutely hate watching her seize or struggle to communicate exactly what hurts. It's natural.
I can tell how much Freya loved her head massage. Her little mesmerized, “oh yeah” look was so cute. Your children do so well with Freya as do you and your husband. Everyone seems to stay so even keel. To me, that’s amazing. I have 3 children. There’s not many even keel days that I can remember with my family of 5.
Hey there Marci lovely to see another video shame about Freya having a seizure and then throwing up and she throws up alot that's crappy .😟 Wow you really know so much about medical process in CDLS .ah that's why it effects Freya's growth etc.hard remember all but yeah is fascinating .wow that's a big moment saying about they wish Freya could talk to .must be difficult and sad to be honest .would be amazing to have actual chats with her .❤😟
You are a fantastic mom to all of you children while being the best you can be for Freya! Anyone should understand how trying your life is and let’s not forget your husband. Everyone has ups and downs in life but, when anyone in the family is living with a health condition it can feel even worse especially having child with a complex syndrome. Please don’t be hard on yourself.
❤ my heart goes out to you I thought your pain when you were just saying that I'm so sorry but she is thriving so on the positive side she is actually amazing she's walking now doing the side steps
Those people don’t see Freya on her bad days, you do. I’m severely sight impaired from berth, I sometimes feel angry when I cannot get out to local functions and activities not on bus routs or train, it hurts when I see family’s off in their cars to these things. That’s just on bad days otherwise I find something to do. Conflicting feelings are always not far from the surface. On the whole I’m glad for the life I have been given conflicting as it can be. I suppose what I’m trying to say is you’re not alone. God Bless you all on your journey with Freya, I love your videos they make me feel like I’m not alone either. Thank you!
I think when her sibling said that it kind of spotlighted her disability kids have a way of putting their finger on the pulse and that’s painful and I think maybe you feel responsible that you cannot make it right for your kids because you are so empathetic ❤️ You are completely entitled to feel sad having to juggle all these feelings .Freya is imperfectly perfect and i believe as she gets older she will find a way to tell you more ,she makes you work so much harder to engage with her that can be exhausting and exhilarating .I am glad you share with us the reality it teaches us so much . Do something that will make you belly laugh 😅 for me it can be Laurel and Hardy .We care so much for you ❤
I understand your feeling because my little sister has CdLS, and I feel sad when she gets sick because she cannot tell us what is hurting her. Sometimes she is very angry or sad and starts crying because something is hurting her but she does not know how to tell us about it. I wish Freya a happy and beautiful life.❤
Marcie, I hear you!! I love and adore my non verbal girlie with ASD but i often wish things were different and that I didnt have the constant worry we all have about the future with our special kiddos. And that life wasn't so difficult for her already at just 5yo. I get it, i hear you, and im with you ❤
I want to say one more thing Marci as your very smart ,and know this ,anyone who comments negatively, is not worth any time ,cause they dnt live your life ,have the challanges you guys go threw you seem like you dnt let people get to you . Your family is great , funny , happy ,loving ,smart ,strong .the best family way of life .❤ Its no doubt why so many people love seeing you life .
Thank you also for explaining how those “but..” comments feel. I apologize if I have ever said anything like that. I am sorry you struggle at times, I’m sorry the kids have big feelings about it all, and I’m also very proud of how you all handle and deal with it. Though it is hard, though there are hard days, you don’t let it overwhelm you to the point where you can’t do what is needed. I am glad that you have this family of followers to offer support, and I truly hope having this channel has been cathartic for everyone. Love you guys, thank you all for just being yourselves.
My nephew is a biochemical engineer and I’m sure he would find this gene mutation process fascinating! 🧬 I need to run it by him the next time I see him. It does totally make sense to me…and I’m an educator. lol 😂
A non verbal child in any form of disability is really hard for parents and siblings. That was probably the hardest thing we dealt with throughout our daughter’s life who is now 46 years old and diagnosed with severe autism nonverbal and a touch of cerebral palsy from birth. As a parent though you learn to see the nonverbal body language, the noise language and that helps in meeting their needs. It’s so hard for them also.😰And it’s the hardest thing you may ever do momma❤️❤️❤️❤️We had one sibling that wanted to mother her all the time and another sibling that resented her. That was so painful and to this day chooses to stay away 😰what doesn’t make us crazy will make you stronger🙏🏽🙏🏽🙏🏽
This is a,great video Marcie. I do not have children with disabilities. I think it's great that the other kids verbalize how their feeling about Freya. Of course they wish she could communicate better, these are loving thoughts. No one would wish an epileptic to have seizures. Freya knows her siblings. I too hope that Freya can communicate better in the future. In whatever form is best for her. Hiw lucky us she to yave siblings who want the best for her. I enjoyed your teaching moment, I'm assuming this disease is random & not heritary. Ya it's OK to be upset, angry , it's the disease that your angry at. Rightfully so. ❤
I want you to know that I am validating all your feelings. I am sure it can feel isolating for you at times. You are also correct is saying there are different emotions and feeling that coexist at the same time. Keep sharing your feelings with us and do not hold it in. You have a forum where people care about you Marcy and want to listen to what you are going through and dealing with.
It does suck Marci, I want to give up all the time. And my family also wishes for different circumstances all the time. I’m sitting with you in the suck. I know our circumstances are different, sometimes it helps to hear that you aren’t the only one. Prayers and good juju. 💜💜
🙏❤ that Freya’s headaches go away very soon and is back to having fun with her favorite loud toys and gets to enjoy her new school year❤. How did the big kids like their first week? Can’t wait for Freya to show off her school work, she is so cute showing off what she made or got from school. She is so excited and proud❤
While you were talking about genes/DNA, etc. I thought you can't help by being awed by the human body! What it does right what it does wrong..SO MANY SMALL THINGS that make us who and what we are! I've heard you talk about the grief you experience and I understand it. I've thought about what little individuals Freya and Sebastian would be if it weren't for CDLS. Of course they would be normal functionally, but then we wouldn't know who they were. Now before anyone attacks what I've written PLEASE know that I do not wish childhood disorders, disabilities or syndromes on anyone's kids. I adore Freya and Sebastian for who they are now! I love the families of both kiddos! I also admire both families for not buckling under the grief they experience...of course you can't buckle, Marci has a hubby, 3 other children, a house to run, etc..Steph (Sebastian's) Mom has a hubby, a house to run, and who knows another baby in future. Life goes with or without us. I guess what I'm getting at is: the grief, yes it's always there but Marci I ALWAYS see both you and Steph process and then move forward. I don't believe that I possess that kind of strength. Again, I have no children, I don't have the strength of a Mom. THANK YOU MOMS!!!!
The wild thing is the strength comes from breaking down so often. We know that we need to be there so we are and then break down later when we have time 😂
I have always suffered severe migraines, and I have 3 children who also do. One child has to be treated with migraine medications, both preventative and treatment, but we managed to keep the other two off prescription medications. One of the most helpful things was a trick our neurologist taught us. When one started feeling the migraine coming on, I would give Tylenol or Ibuprofen and something with caffeine. Then I would have them put their hands, and feet if possible, in ice water. Where migraines are caused by over-dilation of the blood vessels in the head, the cold on the limbs helps the blood vessels start to constrict, easing the migraine. Caffeine helps with that as well, which is why it is in so many migraine meds. If we catch the migraine before it is full-blown, that trick works so well for us.
Yes my mom did the same for me. Ibuprofen and a coke. She brought me one to school once when I had a migraine coming on I think I was about 8 and my teacher had a fit 😂
Those emotions are normal to have. My so was born hearing impaired and didn't talk until he was three. I at times wished he could hear normally. He missed so many sounds when he was little.
Yes, you can feel two things at once! I once heard a grieving person say, you can absolutely feel sad and happy over your loved one at the same exact time! ❤ Freya didn’t seem to like being in the light by the doorway…..she was kinda squinting her eyes…probably her head hurts. Feel better soon!
It is a parent or sibling hard and heartbreaking at times ,as Freya can't chat with her sisters and brother or say to you or Chris ,I have a sore tummy or say wanting to say let's play outside .I have kids but I can't imagine how that feels .yep she's a little feisty amazing ,strong funny sweetest of girls .so obviously you love her so much no matter what she can or can't do .which is so lovely .❤ Good luck Freya at school to . Take care guys .she is beautiful
I just rewound it three times because that's the first time I've seen Freya sign for more. I know she does it frequently but it was my first time actually seeing her sign for it. She's the cutest . You and I must watch similar programs because 18 and only 30 in tall was on my FYP and I watched it last night to. I think she said her bones fused together when she was two and I guess it said that that made her a certain kind of little person. So does that mean she wasn't actually born a little person but something happened along the way like her bones fusing that made her a little person? That was what I was left wondering. I watched the Collin Ferrell story about his son as well. Sounds like our FYP's are similar to each others..😊😊😊 I'm a sucker for a good documentary though. I love em'! Thanks again for vlogging and sharing!!! 💜💜💜😊
My niece has 3 boys with Duchene Muscular Dystrophy. All met milestones in walking and running until about 5 or 6 and all were in wheelchairs by the time they were 10. The neighbor boy was throwing a fit because his Mom wanted him to take the trash to the curb. My niece said she wished her boys had the strength and ability to take the trash out. I can see how you all love everything about Freya, but wish some things were different, for all of you.
I would be worried if you were not experiencing the gambit of grief in having a child that is different with a life altering diagnosis. You are the best mum you know how to be, navigating a complex dynamic within your family. There are a myriad of I just don’t knows, and you not only have to process it for yourself, you also have to empower Freya’s siblings to navigate through the process too. Please be kind to yourself and know you’re doing great.
Marcie, I was just thinking about little sweet Freya today. I didn't think of this yesterday when I watched your video but I was thinking about her today when I got the worst headache. I had my hair up in a ponytail for a long time and after a while, it really made my head hurt. As soon as I took it down my head immediately stopped hurting. Do you think that could effect her little head maybe? I know you have to keep her hair back but I just wanted to suggest that. Head bands also give me headaches. You're the greatest Mom ever so I'm sure you have already thought about it. Hope she is feeling better! And Jesse too! Hugs and prayers! 🙏🙏🙏❤❤❤🙏🙏🙏
I have thought of it. Like you said it is hard because I have to keep it back so she doesn't pull it today i did it half up with a braid. We will see if that is better
Hi Marci! Thx for explaining so eloquently how more than one feelings and emotions can exist at once. So true! As for the headache, it seems the bright light was bugging Freya a bit, too. Does she have a sign for a headache yet? Might help in her being able to communicate one to you I the future. Just thought since her signing is improving so well, it might be an option? ❤❤❤
Siblings may be bringing home new bugs too,happens every year. Maybe she can learn to sign that her head hurts. Hope she feels better soon, headaches suck. I read several articles when I was suffering from migraines that said the reason we get headaches is the arteries leading to our brain are opened too wide so to put ice packs on the neck and side of the head hoping the cold shrinks the arteries and slows down how fast the blood is rushing to the brain. It helped me but I’m no doctor and it’s only my experience. 🙋🏼♀️🥰
Your feelings are perfectly valid Marci. Love and grief can live side by side. My body is slowly deteriorating (I have acute Rheumatoid and Osteo arthritis for 30+ years) and not only do I grieve the abilities I have lost but so do my family. It is especially hard when we have family gatherings and I cannot partake in activities but I just do what I can. However, when you as the adult have to deal with that grief on behalf of yourself, Freya and her siblings, that's really tough. Sending you BIG HUGS 🫂🫂🫂🫂 because I don't have any way to help you through this. 🥰🥰
Yes it is hard,there's nothing wrong with voicing frustration at Freya's challenges, same for the siblings. You are all human, I'm a mom too and a grandma but my son did not have CDLS.
I wish scientists could come up with something that would have those genes do what they're supposed to do, when they're supposed to do it. So they could really help Freya make herself known. But hey, who knows it just might be that way some day. 🥰
Yes ! She let you know what she wanted, a head massage. I think you nailed it mom - she has a headache. God headaches suck! Nothing like a head massage ! I look so forward to shampoos at my salon. Knocks out my tension.instantly. She may love a massage with a shampoo too!
Se que es normal la existencia de sentimientos encontrados al convivir con una persona con discapacidad intelectual como es lo que conozco por mi hermano ; ni puedo recordar la cantidad de veces que desee que el fuera " normal " , este pensamiento y que le aceptó y le quiero es como en realidad todas las familias que tienen está situación, trabaja nuestro cerebro y es totalmente normal , es humano pensar con esta combinación y no solo en estos casos , sucede en muchas otras situaciones ; somos así , nuestro intelecto es así y ahí está la " magia " de los humanos , o eso al menos pienso yo . 💌
It's okay to vent. We all need it from time to time. It's hard as like you said she's non-verbal and can't tell you how she's feeling. You have to be a detective at times figuring things out by her body language, her basic signing and other symptoms she maybe presenting. It's not easy.
Yes it is hard, my companions daughter has Fredrick’s Ataxia both he and his wife had a recessive gene, 1 child had the trait and the other is a carrier. She was like any other child until about 12 by 18 she was in a wheelchair and it progressively got worst and now at 51 she can’t walk, speech very slurred, difficulty swallowing, lots of issues but her brain is fine, she’s locked in a body that doesn’t work anymore.
There is nothing like your mother rubbing your back or massaging anyother part of you.She needs that comfort. She will never forget that touch.❤
Or a mother’s hug……nothing like it!
Hi Marci, I have been disabled since birth and am now in my 60’s. The grief process is hard for all of us, including those of us that have all, or most of our intellectual faculties. And, you are absolutely right, we can have more than one emotion that relates to disability. I actually just wrote a blog on grief and disability (not posted yet, will be this week), so that able-bodied people who don’t have understanding or connection to disability might better understand how grief affects us. It’s the gift that keeps on giving. The grief never goes away it’s always simmering under the surface, especially if we have the type of disability that progressively changes and deteriorates. I know how my parents are still affected by the changes I go through, as well as my husband and my kids and grandkids. It becomes a constant reminder of what could have been…of our dreams unfulfilled, our parents hopes and dreams for our lives.
You are an incredible mom and you have absolutely beautiful, compassionate children. The one aspect that you may not see for yourself that others may or may not pick up on from the outside looking in, is that you have an incredible sense of intuition with Freya. I see you pick up on subtle nuances of her changes to notice when something isn’t “normal” or just not quite right with Freya. While she may never be “normal” (I personally hate that word), she has her own way of communicating and learning. If you look back at some of your videos from the beginning of your channel to now, you will see how much Freya has grown into her own person, how much she has learned, and how beautifully her little personality has developed.
It’s a blessing to see, maybe you all just need to see it again as a reminder.
She has so much to offer, so much joy to share, and so much love that is evident in every smile. Again, I completely understand the grief aspect, I just don’t want you all to miss the blessing and I know you don’t take one minute for granted!
Sending love and heart hugs! xo Angel
Thank you so much. Send me a link when you post that. I would love to read it.
@@Freyasluckyarm will do! Thank you! 😊
Marcie, you make sense! Of course you all love Freya as she is. But if things could be different, yes you'd want her to be able to run around with her siblings, eat anything she wanted, tell you about her day. Instead, you read her cues and make her comfortable, love her and accept her! I guess I never thought about what her siblings would want for her. Thank you for sharing. I think you do a great job with all your kids and am so glad you have Chris to talk with and help out. Love you all ❤
Thank you
Today’s episode is a real tearjerker. One benefit of Freya’s condition is that she can just be. She’s unaware that she’s different. I have a minor physical flaw that has impacted me all my life. I was teased in my youth and filled with shame. Now as an old lady, I’m just grateful for my health as well as many other blessings.
@@lesliematteis8010 I'm sorry you were teased. Kids can be cruel.
@@lesliematteis8010 your wonderful, I bet you have many fun friends.
You don’t need to explain your feelings. You, Chris and the 3 kids are doing the best you can for Fryea. Please don’t beat yourself up but as a caregiver of a loved one, I completely understand your frustration and sense of thinking there is more you could do. You are normal with normal feelings but thanks for sharing. Blessings.
I can’t even imagine how hard it must be for everyone. She is amazing and you are all doing a great job with her. It can be frustrating for us with typical developmental children to deal with issues that are beyond our control. 💜
Hang in the momma, you've had rough couple of days. Thanks for sharing all sides of being a family with a disabled child. ❤
Thank you for sharing this ❤ I loved learning more about the NIBPL gene, that was very helpful (that’s the same gene that Ruth’s mutation is on). And thank you putting words to that tension of joy and grief. I am feeling that a lot lately about Ruthie. We adore her so much just as she is, and also grieve what is broken. Thanks for being brave and sharing on this platform, it helps me feel not so alone!
What a beautiful video, Marci and you explain it so well. Of course you can have those feelings and those who make the comments beginning with, “but” have not lived your life. Love to you all ❤
Maybe the word you're looking for is "bifurcation" but that's splitting into 2 parts. I hope Freya is ok and not getting sick. 🌞. I am so heartbroken for you all. I love that you're all are able to be honest and willing to share it.
It would be impossible not to have conflicting feelings. You want the very best for Freya and it is not fair that life has to be more challenging for her. You are such a good Mom in that you let your kids voice their thoughts and feelings and validate them. It is so much better for them to be able to say what they are thinking and have you to help them process. Although I am sure it is hard for you to hear at times too. It is so obvious from your videos how much joy Freya brings your family....and all your viewers. Her smile lights up the room for sure!!
Thank you it is hard but I want open communication in our house
You've said this very well and it's important that it has been said
Your a wonderful mother Marci,so wonderful.
Praying she feels better soon, and for all of you.
Oh my goodness, was Freya signing"more". She really liked that head massage. Marci, you are a beautiful, wonderful mom to all of your family. God bless you all❤
Bless you all,and always be true to your feelings,we all want great things for our children
She is so stinking cute. I love watching her interact with the family.
You great mom and great family
Thank you so much!
Please be kind to yourself and the rest of the family, Freya's condition was not what you or your family expected or wanted, But the different path that you are now on, has its joys and its challenges, as all children do. You are doing an amazing job :D
We have very little control over our feelings and emotions. They are what they are, and what we need from others is validation. I understand and I feel sad, too. You are a great mom for validating the feeling Freya’s sibling have. Just to be understood is so important.
My grandson has a disability also I can relate to dealing with grief. My grandson is nonverbal. He can’t always tell us but we learn to communicate with his body cues
Feel better Freya, precious girl.
Marci your feelings are completely valid. Thank you for sharing and helping me understand. Hope Freya is feeling better soon!
Thank you so much!
That’s the first time I’ve ever seen her sign (only cuz it was slower than usual)!!!! Good job kiddo!!!!!
Yes she is becoming very deliberate in her signs
It doesn't matter if she is great, your allowed to have your feelings xx❤
My heart goes out to you I understand how hard it must be and you are allowed to have your feelings. Please know that you are a fantastic mother to all your children
I love to see her signing and communicating with you. I understand the grief you have. Dichotomous feelings are difficult and the hardest to talk about and deal with. You are absolutely correct in saying that is possible to have more than one emotion at the same time and I applaud you for being able to acknowledge that and process it. You are a courageous person even. Though you probably don’t feel like you are in the midst of this specific emotional storm. Something that comforts me and also drives me to distraction is that everything is constantly changing, with me having very little control over it. It comforts me because I know that everything changes and I can stop and wait knowing it will change. Sort of “this too shall pass.” Thank you for sharing… it helps me to know how to pray for you and your family. I love you all.
Yes it all passes. The good and the baf
She is the cutest little girl I've ever seen !
Thank you for the biology explanation... whenever I hear a medical parent talk about it, it sounds sometimes as though they are experts... I am glad that I am not alone in the still learning! Xx
Always always researching
I am so inspired by you and your journey! Your story and emotions are so real and the fact that you share so openly are your gifts to the rest of the world. Acknowledging that grief is so vital for all of you. Voice your thoughts-many of us are listening with all of our hearts. You’re in my prayers and thoughts.
Georgia
Thank you Georgia. That means so much to me
Marcie, give yourself grace, sweetie. You are doing a magnificent job & certainly it’s FAR FROM EASY. You are allowed your hard, ambivalent, feelings. You always come across so up. It’s ok to be frustrated, tired, guilty, sad and mad. God knew exactly what he was doing creating your family. You’re a good mama 💞. Believe it!
The gene change is pretty well explained as a parent ,to the rest of us ,not easy to get ceetain things across ,cause not all educated in these gene changes .So good one for doing so as much as you could 👍😌
You're such a good mom❤. As hard as this is ....and it is....she is such an awesome kid in spite of her syndrome. Your family is amazing. Glad shes feeling better.
That one popped on my feed, too. Fascinating.
Marci, you are an amazing mother!! I, too, have four children, my youngest t being an iud baby and born at 27.5 weeks. He is now 19 and thriving. I am grateful for you, Chris, and each of your children.
Please, vent away! Give voice to your frustrations, we weren’t made to shoulder burdens alone. You and your family are in my prayers.
Wow you did sooo good at explaining that process or lack of. Good mum.☺️
Thank you so much 😊
Yes it’s hard and yes you love her so much. Thanks for sharing your feelings. ❤❤❤
I hope Freya feels better soon. I never thought of all your wishes before. As a mom and grandma, I get it. I wish my daughter never moved so I could spend time with my grandchildren. I have health issues and can't go through the Rockies to get to California. Yes, I live east of the Rockies. Love your family❤❤❤❤
Thank you so much for sharing, Marci. My cousin and I both have a genetic change of unknown specificity. It's just one base pair that codes for the wrong amino acid in that particular protein but the change must be recessive because it doesn't seem to cause any disease. Probably those random changes happen all the time but we don't know about them. Since Freya's random gene change is dominant, she has this rare syndrome. I know how much you all love Freya but how much you all wish that she could communicate with you. Your family is wonderful in the way you handle her disability and how you all love each other. God bless you all. ❤
Good evening hope your day was wonderful and hope FREYA gets feeling better ❤️🙏❤️🙏 God bless you and your family 🙏❤️🙏❤️😊
Wow!! Thank you for sharing the science behind Cornelia De Lange! I work in healthcare, not a frontline worker, more behind the scenes, so this really connected the missing pieces for me. You’re an amazing Mom, I love watching you with your kids, how you adapt to each child’s personality and needs. Thanks for sharing with us. ❤
Thank you so much
You are such a wonderful mom. It’s ok to have those feelings, I understand them completely. I also have a challenged child. All I want is their happiness.
Yes to all of this. Thank you for explaining the biology of her diagnosis. And If you don’t hear “but she’s so cute”, then it’s “well at least…” which doesn’t help either 😵💫
Feel better Freya. Blessings to your Family ❤🧸🧸🧸🧸
Marcy I totally understand where you’re coming from. I’ve been disabled all my life and as I can communicate it’s still so so hard. So I get where you’re coming from. I do want to let you know that you and your husband and other kids are doing great.. but I do totally get where you’re coming from.
Thank you for explaining this .and being so honest, you don't hear that much.
Most don't talk about these feelings but I'm sure they have them. Hopefully It will make people see they are not alone... You are an amazing mom and have an amazing family.
Bottom line , we love our kids no matter what , that doesn't mean that it can be hard sometimes. ❤
As soon as i finished watching your video , the next thing that came up was the video you, i think was talking about.
The 18 year old girl named Georgia? 30 inches tall ? What a beautiful young lady , my heart broke for all the pain she has all day.
Yes that was the one
Freya is an amazing little girl, but you have every right to acknowledge the hard. You love her and you don't want to watch someone you love struggle with things that come so easily to her typically developing peers. I love someone who is medically complex too, and I would NEVER want to change the beautiful person that she is, but that doesn't mean I can't absolutely hate watching her seize or struggle to communicate exactly what hurts. It's natural.
Exactly
I can tell how much Freya loved her head massage. Her little mesmerized, “oh yeah” look was so cute. Your children do so well with Freya as do you and your husband. Everyone seems to stay so even keel. To me, that’s amazing. I have 3 children. There’s not many even keel days that I can remember with my family of 5.
Hey there Marci lovely to see another video shame about Freya having a seizure and then throwing up and she throws up alot that's crappy .😟 Wow you really know so much about medical process in CDLS .ah that's why it effects Freya's growth etc.hard remember all but yeah is fascinating .wow that's a big moment saying about they wish Freya could talk to .must be difficult and sad to be honest .would be amazing to have actual chats with her .❤😟
You are a fantastic mom to all of you children while being the best you can be for Freya! Anyone should understand how trying your life is and let’s not forget your husband. Everyone has ups and downs in life but, when anyone in the family is living with a health condition it can feel even worse especially having child with a complex syndrome. Please don’t be hard on yourself.
You’re doing a good job
❤ my heart goes out to you I thought your pain when you were just saying that I'm so sorry but she is thriving so on the positive side she is actually amazing she's walking now doing the side steps
I love watching your videos. You do such a great job explaining your feelings about Freya and there is nothing wrong as about the way you feel. ❤
Thank you so much!
Those people don’t see Freya on her bad days, you do. I’m severely sight impaired from berth, I sometimes feel angry when I cannot get out to local functions and activities not on bus routs or train, it hurts when I see family’s off in their cars to these things. That’s just on bad days otherwise I find something to do. Conflicting feelings are always not far from the surface. On the whole I’m glad for the life I have been given conflicting as it can be. I suppose what I’m trying to say is you’re not alone. God Bless you all on your journey with Freya, I love your videos they make me feel like I’m not alone either. Thank you!
Thank you
I think when her sibling said that it kind of spotlighted her disability kids have a way of putting their finger on the pulse and that’s painful and I think maybe you feel responsible that you cannot make it right for your kids because you are so empathetic ❤️
You are completely entitled to feel sad having to juggle all these feelings .Freya is imperfectly perfect and i believe as she gets older she will find a way to tell you more ,she makes you work so much harder to engage with her that can be exhausting and exhilarating .I am glad you share with us the reality it teaches us so much . Do something that will make you belly laugh 😅 for me it can be Laurel and Hardy .We care so much for you ❤
I understand your feeling because my little sister has CdLS, and I feel sad when she gets sick because she cannot tell us what is hurting her. Sometimes she is very angry or sad and starts crying because something is hurting her but she does not know how to tell us about it. I wish Freya a happy and beautiful life.❤
It is so hard 💜
Marcie, I hear you!! I love and adore my non verbal girlie with ASD but i often wish things were different and that I didnt have the constant worry we all have about the future with our special kiddos. And that life wasn't so difficult for her already at just 5yo. I get it, i hear you, and im with you ❤
Exactly!!
I want to say one more thing Marci as your very smart ,and know this ,anyone who comments negatively, is not worth any time ,cause they dnt live your life ,have the challanges you guys go threw you seem like you dnt let people get to you . Your family is great , funny , happy ,loving ,smart ,strong .the best family way of life .❤ Its no doubt why so many people love seeing you life .
Feel better beautiful Freya ❤
Thank you also for explaining how those “but..” comments feel. I apologize if I have ever said anything like that. I am sorry you struggle at times, I’m sorry the kids have big feelings about it all, and I’m also very proud of how you all handle and deal with it. Though it is hard, though there are hard days, you don’t let it overwhelm you to the point where you can’t do what is needed. I am glad that you have this family of followers to offer support, and I truly hope having this channel has been cathartic for everyone. Love you guys, thank you all for just being yourselves.
The channel has it's good points and not so good points, but overall it has been a good experience.
My nephew is a biochemical engineer and I’m sure he would find this gene mutation process fascinating! 🧬 I need to run it by him the next time I see him. It does totally make sense to me…and I’m an educator. lol 😂
A non verbal child in any form of disability is really hard for parents and siblings. That was probably the hardest thing we dealt with throughout our daughter’s life who is now 46 years old and diagnosed with severe autism nonverbal and a touch of cerebral palsy from birth. As a parent though you learn to see the nonverbal body language, the noise language and that helps in meeting their needs. It’s so hard for them also.😰And it’s the hardest thing you may ever do momma❤️❤️❤️❤️We had one sibling that wanted to mother her all the time and another sibling that resented her. That was so painful and to this day chooses to stay away 😰what doesn’t make us crazy will make you stronger🙏🏽🙏🏽🙏🏽
This is a,great video Marcie. I do not have children with disabilities. I think it's great that the other kids verbalize how their feeling about Freya. Of course they wish she could communicate better, these are loving thoughts. No one would wish an epileptic to have seizures. Freya knows her siblings. I too hope that Freya can communicate better in the future. In whatever form is best for her. Hiw lucky us she to yave siblings who want the best for her. I enjoyed your teaching moment, I'm assuming this disease is random & not heritary. Ya it's OK to be upset, angry , it's the disease that your angry at. Rightfully so. ❤
Yes it is random
I want you to know that I am validating all your feelings. I am sure it can feel isolating for you at times. You are also correct is saying there are different emotions and feeling that coexist at the same time. Keep sharing your feelings with us and do not hold it in. You have a forum where people care about you Marcy and want to listen to what you are going through and dealing with.
Thank you for this amazing information ❤
Big hugs. I hope Freya is better
It does suck Marci, I want to give up all the time. And my family also wishes for different circumstances all the time. I’m sitting with you in the suck. I know our circumstances are different, sometimes it helps to hear that you aren’t the only one. Prayers and good juju. 💜💜
Thank you
Stay strong mama
Just looking at Freya she seems off. I hope she gets some good rest and feels better real fast.
🙏❤ that Freya’s headaches go away very soon and is back to having fun with her favorite loud toys and gets to enjoy her new school year❤. How did the big kids like their first week? Can’t wait for Freya to show off her school work, she is so cute showing off what she made or got from school. She is so excited and proud❤
I love that too
While you were talking about genes/DNA, etc. I thought you can't help by being awed by the human body! What it does right what it does wrong..SO MANY SMALL THINGS that make us who and what we are! I've heard you talk about the grief you experience and I understand it. I've thought about what little individuals Freya and Sebastian would be if it weren't for CDLS. Of course they would be normal functionally, but then we wouldn't know who they were. Now before anyone attacks what I've written PLEASE know that I do not wish childhood disorders, disabilities or syndromes on anyone's kids. I adore Freya and Sebastian for who they are now! I love the families of both kiddos! I also admire both families for not buckling under the grief they experience...of course you can't buckle, Marci has a hubby, 3 other children, a house to run, etc..Steph (Sebastian's) Mom has a hubby, a house to run, and who knows another baby in future. Life goes with or without us. I guess what I'm getting at is: the grief, yes it's always there but Marci I ALWAYS see both you and Steph process and then move forward. I don't believe that I possess that kind of strength. Again, I have no children, I don't have the strength of a Mom. THANK YOU MOMS!!!!
The wild thing is the strength comes from breaking down so often. We know that we need to be there so we are and then break down later when we have time 😂
@@Freyasluckyarm goodness! Well I hope I made sense. So often now my meaning goes off in left field! LOL! But I still admire you! 😁
@@colleenford5398 it made perfect sense
@@Freyasluckyarm thank you Marci! Is that the correct spelling of your name?
@@colleenford5398 it is
Get well ❤❤❤
You are so wellcome
I have always suffered severe migraines, and I have 3 children who also do. One child has to be treated with migraine medications, both preventative and treatment, but we managed to keep the other two off prescription medications. One of the most helpful things was a trick our neurologist taught us. When one started feeling the migraine coming on, I would give Tylenol or Ibuprofen and something with caffeine. Then I would have them put their hands, and feet if possible, in ice water. Where migraines are caused by over-dilation of the blood vessels in the head, the cold on the limbs helps the blood vessels start to constrict, easing the migraine. Caffeine helps with that as well, which is why it is in so many migraine meds. If we catch the migraine before it is full-blown, that trick works so well for us.
Yes my mom did the same for me. Ibuprofen and a coke. She brought me one to school once when I had a migraine coming on I think I was about 8 and my teacher had a fit 😂
Those emotions are normal to have. My so was born hearing impaired and didn't talk until he was three. I at times wished he could hear normally. He missed so many sounds when he was little.
Yes, you can feel two things at once! I once heard a grieving person say, you can absolutely feel sad and happy over your loved one at the same exact time! ❤ Freya didn’t seem to like being in the light by the doorway…..she was kinda squinting her eyes…probably her head hurts. Feel better soon!
It is a parent or sibling hard and heartbreaking at times ,as Freya can't chat with her sisters and brother or say to you or Chris ,I have a sore tummy or say wanting to say let's play outside .I have kids but I can't imagine how that feels .yep she's a little feisty amazing ,strong funny sweetest of girls .so obviously you love her so much no matter what she can or can't do .which is so lovely .❤ Good luck Freya at school to . Take care guys .she is beautiful
Sending a soft hug for you
I saw that same show on utube! That girls name was Georgia from the UK! Love ❤️ from Texas
Yes! It was very good
I just rewound it three times because that's the first time I've seen Freya sign for more. I know she does it frequently but it was my first time actually seeing her sign for it. She's the cutest . You and I must watch similar programs because 18 and only 30 in tall was on my FYP and I watched it last night to. I think she said her bones fused together when she was two and I guess it said that that made her a certain kind of little person. So does that mean she wasn't actually born a little person but something happened along the way like her bones fusing that made her a little person? That was what I was left wondering. I watched the Collin Ferrell story about his son as well. Sounds like our FYP's are similar to each others..😊😊😊 I'm a sucker for a good documentary though. I love em'! Thanks again for vlogging and sharing!!! 💜💜💜😊
I researched it after. It is a gene change but it doesn’t present until the child is 2 or 3. Amazing.
@@Freyasluckyarm ohh ok. It is amazing
🥹 love you Marci. ❤ praying Freya’s heady goes away. 😘
Thank yiu
@@Freyasluckyarm
❤️
You should get a head massager for Freya -- the kind that has long spider like "legs". Thank you.
We should!
My niece has 3 boys with Duchene Muscular Dystrophy. All met milestones in walking and running until about 5 or 6 and all were in wheelchairs by the time they were 10. The neighbor boy was throwing a fit because his Mom wanted him to take the trash to the curb. My niece said she wished her boys had the strength and ability to take the trash out. I can see how you all love everything about Freya, but wish some things were different, for all of you.
I would be worried if you were not experiencing the gambit of grief in having a child that is different with a life altering diagnosis. You are the best mum you know how to be, navigating a complex dynamic within your family. There are a myriad of I just don’t knows, and you not only have to process it for yourself, you also have to empower Freya’s siblings to navigate through the process too. Please be kind to yourself and know you’re doing great.
God bless ❤ you all 😊
Good afternoon Freya 😊
Really wish she could at least tell when she's in pain, maybe one day, don't give up hope that she can't learn to express her needs and wants better.
Marcie, I was just thinking about little sweet Freya today. I didn't think of this yesterday when I watched your video but I was thinking about her today when I got the worst headache. I had my hair up in a ponytail for a long time and after a while, it really made my head hurt. As soon as I took it down my head immediately stopped hurting. Do you think that could effect her little head maybe? I know you have to keep her hair back but I just wanted to suggest that. Head bands also give me headaches. You're the greatest Mom ever so I'm sure you have already thought about it. Hope she is feeling better! And Jesse too! Hugs and prayers! 🙏🙏🙏❤❤❤🙏🙏🙏
I have thought of it. Like you said it is hard because I have to keep it back so she doesn't pull it today i did it half up with a braid. We will see if that is better
@@Freyasluckyarm I knew you had thought of it! You are the best Mom! Hope the little angel is feeling better! She amazes me more every day! ❤️
Hi Marci! Thx for explaining so eloquently how more than one feelings and emotions can exist at once. So true!
As for the headache, it seems the bright light was bugging Freya a bit, too. Does she have a sign for a headache yet? Might help in her being able to communicate one to you I the future. Just thought since her signing is improving so well, it might be an option?
❤❤❤
No we definitely need to teach it to her
Siblings may be bringing home new bugs too,happens every year. Maybe she can learn to sign that her head hurts. Hope she feels better soon, headaches suck.
I read several articles when I was suffering from migraines that said the reason we get headaches is the arteries leading to our brain are opened too wide so to put ice packs on the neck and side of the head hoping the cold shrinks the arteries and slows down how fast the blood is rushing to the brain. It helped me but I’m no doctor and it’s only my experience. 🙋🏼♀️🥰
I love ice packs for my headaches too
Your feelings are perfectly valid Marci. Love and grief can live side by side. My body is slowly deteriorating (I have acute Rheumatoid and Osteo arthritis for 30+ years) and not only do I grieve the abilities I have lost but so do my family. It is especially hard when we have family gatherings and I cannot partake in activities but I just do what I can. However, when you as the adult have to deal with that grief on behalf of yourself, Freya and her siblings, that's really tough. Sending you BIG HUGS 🫂🫂🫂🫂 because I don't have any way to help you through this. 🥰🥰
Thank you.
Yes it is hard,there's nothing wrong with voicing frustration at Freya's challenges, same for the siblings. You are all human, I'm a mom too and a grandma but my son did not have CDLS.
Have you considered doing a TED talk on this topic?
😂 who do I contact
I wish scientists could come up with something that would have those genes do what they're supposed to do, when they're supposed to do it. So they could really help Freya make herself known. But hey, who knows it just might be that way some day. 🥰
God bless you sweetheart ❤
Yes ! She let you know what she wanted, a head massage. I think you nailed it mom - she has a headache. God headaches suck! Nothing like a head massage ! I look so forward to shampoos at my salon. Knocks out my tension.instantly. She may love a massage with a shampoo too!
💜🌻
Se que es normal la existencia de sentimientos encontrados al convivir con una persona con discapacidad intelectual como es lo que conozco por mi hermano ; ni puedo recordar la cantidad de veces que desee que el fuera " normal " , este pensamiento y que le aceptó y le quiero es como en realidad todas las familias que tienen está situación, trabaja nuestro cerebro y es totalmente normal , es humano pensar con esta combinación y no solo en estos casos , sucede en muchas otras situaciones ; somos así , nuestro intelecto es así y ahí está la " magia " de los humanos , o eso al menos pienso yo . 💌
Thank you so much
It's okay to vent. We all need it from time to time. It's hard as like you said she's non-verbal and can't tell you how she's feeling. You have to be a detective at times figuring things out by her body language, her basic signing and other symptoms she maybe presenting. It's not easy.
Yes it is hard, my companions daughter has Fredrick’s Ataxia both he and his wife had a recessive gene, 1 child had the trait and the other is a carrier. She was like any other child until about 12 by 18 she was in a wheelchair and it progressively got worst and now at 51 she can’t walk, speech very slurred, difficulty swallowing, lots of issues but her brain is fine, she’s locked in a body that doesn’t work anymore.
❤❤
And I do hear na na and Dada and Mama and Bubba she's actually in the last year she's been talking it might be a slow process but she's getting there