Unexplained illness | The hardest part of disability parenting

[@Bindismom]

You are always so “real” Marcie, nothing dramatic or hyped up, just a good, clear picture of what is happening, and that’s what makes your videos so clear and educational. So sorry the girls are ill and hoping they both feel better quickly. Isn’t it always the case, that as soon as you take them to the Dr., they feel better? We had 5 children in 7 years, a set of twins in the mix….our pediatrician said to me, “it’s just that way, you can’t win with kids, you’ll either bring them in too early or too late” and he was right. Blessings to all of you 👍👍🙏🫶

[@dreamtshirt]

How loving and helpful Jessie is. I hope that Freya is better soon.

[@conniemaniaci3612]

Jessie is such a sweetheart. How frustrating to not know what is wrong with little one. Chris is your rock. Bless him.

[@lisabeaver2919]

I know I've said it before but she has the cutest laugh ever. It makes me smile. Hope both girls feel better soon .

[@meow-meow1]

I hope both Freya and Jessie feel better soon! 💓

[@charleboisb]

As a mother of a 39yr old CdLS daughter, I very much understand how you feel when you aren’t able to determine why your child is screaming or crying because they are in distress. You are doing SO much better at handling a child with a disability than I did when my daughter was young. You have a great support system. Hang in there!

[@TaraLee627]

Freya’s giggle is just the best. Praying that she and Jessie feel better soon!! Marcie, you are amazing!

[@maggietaylor9475]

Sending you a huge hug from Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 ❤❤❤❤❤❤

[@mspinklady74]

Hope the girls feel better I haven't seen you for a while You Tube lost a lot of my channels I was subscribed to. Freya looks so tall now not such a little girlxxx

[@melissaw6446]

Praying for both Freya and Jessie. That sweet Jessie, always the helpful and loving big sister.

[@kayleen9110]

Your always so strong and level headed. With anything medical Im not good. Prayers she is ok. Hard being a mom,always worried about our kids. ❤

[@charliematt99]

I totally get it. My kids were both sick a lot when they count tell me what was wrong. The time you have with that little one is just like having infants. It is maddening and heart felt. I am so sorry. I was nuts when my kids were I’ll. You are a great mother and it’s amazing how you handle you children. You made a decision the take her in to the doctor. That is exactly what I did many times. Just remember what a great mother you are and you have to make decisions based on instinct. Keep your head high. In my mind, I only wish I was half as good of a mother as you are❤

[@supersparkley123]

Sending prayers for Jessie and Freya to feel better soon! ❤🙏🏻🙏🏻🙏🏻

[@kat1368]

🙏 that Freya heals soon and the whole family stay strong and healthy ❤️ Freya’s outfit she wore to the dr. Was very cute on her. Jessie is such a sweetheart ❤

[@patriciaharkin1571]

It's so hard not to go down a rabbit hole in these situations and being sleep deprived does not help. I hope it's something simple that resolves quickly. I did notice the sign on the wall and thought it very appropriate for Miss Freya. Keep your spirits up Marci and look after yourself. 🥰🥰

[@barbararose88]

I have a now adult son who is non verbal. I know how you feel, because I lived it. He had constant ear infections ,even managed to get ear infections after the tubes were in. He is male, so UTIs were one thing we didn't worry about! Hang in there.

[@denisia1111]

Thanks again Marci for always being real. I completely understand having a kid with a painful disability(my daughter).The times when you're just over the far away childrens hospitals who should have the answers but don't, leaving with more frustration, wanting to make your kid feel better, it all adds up, and it just SUCKS! I've said it before and I'll keep saying I really appreciate you being open and honest. It helps to hear another Mom say she's pissed off! To add a little context 2wks ago we drove 150mi's w/2 $11 toll roads one way to Shriners. To discuss my daughter's full spinal fusion, 1yr recovery, and the fact she'll lose mobility afterwards. The only reason at this point she's getting it done is to alleviate her daily pain, despite have a 60deg's S curve you can't really tell. The surgeon just told us she'd get "cosmetic" results but there's little to no chance it will help with her pain! So yep some days you need at least 40mins straight to vent all you frustration.

[@19th-Nervous-Breakdown]

You're such a loving and dedicated mother to adorable little Freya. All of the health issues that she has due to her CdLS, combined with her inability to communicate about where it hurts, makes caring for Freya a real challenge sometimes. I really admire how well you deal with everything plus the health of your other children. You deserve some sort of mother of the year award. 🏆

[@suegibson1960]

How frustrating!!!! To the max! Right now she’s so comfy!

[@julievanderleest]

Oh sweet Freya, feel better soon sweetheart! Love how you’re always smiling. At such a young age she’s already inspired so many people. What a beautiful little warrior you are. You all are.❤

[@tinahauser8864]

Breaks my heart, and I’m just a stranger. I can’t imagine how awful this is for you.

[@marydiaz6205]

Nothing more stressful than your precious children when they don’t feel well! Praying for a calm heart, a mind filled with positive thinking, and focusing on one day at a time and not forecasting catastrophic events that might happen! I validate your anxiety and days when you feel drained and exhausted, we all have those days! I really love you and your family Marci and send you love, care and understanding! The privilege of prayer is so strengthening and empowering!❤❤❤❤❤❤❤❤❤❤❤❤

[@patriciabaldwin4680]

Marci, you are the best mother! Keeping you guys in my prayers, feel better soon and hope the stomach bug is gone for good. I know I saw this a lot, but you have the cutest kids and they are so loving! Much love and prayers 🙏🏻♥🙏🏻

[@laurie2355]

You seem so calm in the midst of this storm. You truly are a wonderful mom, it shows in how kind your kids are. Stay strong. Warm, happy thoughts to you and yours from the Oregon Coast

[@veramaes6599]

I feel so bad for you and Freya and all of you, especially as a Mom. My Granddaughter is high functioning CDLS and it’s so hard. I will say Freya is blessed to have you all as parents and helpful loving siblings. 🙏🏻🙏🏻🙏🏻 hope everyone feels better soon.

[@billstreat8235]

Ty for your videos, love watching them. Hope today is better. Hugsssss

[@charlieoglesby3468]

Hope everyone feels good soon. So sorry you have to go through that. Love your family . #fanforlife❤

[@Rose-xq4bd]

Hang in there Mama!!! Praying for all of you and your Jess is a wonderfull helper!!!❤❤❤❤❤❤❤❤❤❤❤❤❤

[@beckywiese2270]

It's difficult to have a disabled child who can't communicate when and where they hurt. I'll say a prayer for you and Freya. Keep what you are doing. Hopefully, it's not migraine headaches. I get them also.

[@felinelvr27]

Freya has got the cutest smile, and the gorgeous hair….❤

[@karenligus8224]

I'm praying for you all. It hurts so much when your little ones are hurting and you don't know why. And Jesse is so sweet helping with Freya even though she was sick too. She's a great big sister. I'm so glad that Chris is there to listen and support you. You're a great team! ❤

[@DianeLee-je7jm]

Absolute worst when the littles are ill, especially when they can't tell us where. Maybe on the mend though bc she's sleeping? 🙏🏽 hoping the healing and sleep continue for all

[@sharonhl2575]

So sorry for all the frustrations & hope the kiddos feel better very soon. Take care! 🥰

[@beckylindvall5801]

Prayers for Freya to be relieved of her pain. So sorry she’s been suffering.

[@Mari-ek7su]

Happy to see both of your beauties smiling and that y'all got some sleep. God bless 💜🌻🌻💕

[@KeepingItHopeful]

Feel better Freya! Marcie you are such a great mom. ❤

[@boething]

My heart is with all of you. I am so inspired with your story.

[@carliecollette7165]

Sorry!❤ prayers everyone gets some sleep and feels better soon! 😊😊

[@gaylebang7310]

Every time my daughter cried unexpeted I was re Really frustrated. She couldn't tell me.

[@dollfactory]

You're the best mom Marci! You and Chris are both awesome!!

[@joycebaker3798]

As a migraine sufferer, I sincerely hope Freya does not get migraines. She and you have enough already!!

[@Milaperadotti]

I can so relate my daughter is special needs it’s so hard especially when they have trouble communicating. You just want to take away the pain from your child and you can’t.

[@colleenford5398]

That plaque on the wall fits Freya to a T! Yanno, if anyone in KZbin land or Instagram land "think" that they know what's wrong with Freya....YA DON'T! Look, if Marci doesn't know we sure as heck don't know! Hope Jessie's feeling better soon and that you get a diagnosis soon! Praying 🙏 for all!

[@DianaDLovesYarn]

My daughter went through a faze of crying at night at that age from time to time and we found out it was leg pains called growing pains.

[@mmmmlllljohn]

Yes, my brother and me both had leg pains behind our knees starting about Freya’s age … very painful. Very frustrating for Marci and Chris not knowing what to treat. Prayers for Freya and Jessie to heal completely and for mom and dad to get some much needed restful sleep. ❤️🇨🇦🙏

[@DianaDLovesYarn]

@@mmmmlllljohn my daughter was a preemie and I didn't know if that is why she had them so bad, but I remember sitting up many nights rubbing lotion on her legs until she would fall asleep. I felt so helpless. I hope they figure out what it is soon, and that they do get some much needed rest soon. Nothing worse than your child in pain and not much you can do for them.

[@mmmmlllljohn]

@@DianaDLovesYarn My dad was the one who would rub a eucalyptus type of liniment on the back of our legs until we fell asleep.

[@DianaDLovesYarn]

@@mmmmlllljohn I will have to see if I can find some. My daughters son has the same pain at times.

[@mmmmlllljohn]

@@DianaDLovesYarn I’m sure they have better ointments today, like Voltaren or LivRelief. 😘

[@Roro19609]

Hope you’re all back to your norm. Some days can be tough but you all are fierce like your sign say. ❤😊 Marci, continue to take care of yourself because we all need you. Hugs and love from Bradenton, Florida ❤

[@nancyterrywhittemore2015]

God bless this family!

[@azcudiva]

Jessie is a wonderful sister to Freya!! All your kids are great with her, but today it was so sweet to see Jessie tend to her. God bless you all, Marci you're awesome!! Hang in there ❤

[@heleenzuidhof8780]

Marci you are a great mom ❤.I wish i could give you a big hug and heads up. I hope Freya and Jesse feel better soon.

[@reginacruz2900]

You are right. It isn’t fair. She couldn’t have been born into a better family. Hoping her pain was temporary.

[@clarabates3929]

I hope you don’t mean that literally

[@hermanklump8983]

Feel better Freya and Jessie! Hope Mom and Dad get more rest❤

[@CrystalCat24]

Jesse is so attentive to Freya! Using opportunities to teach her and noticing when she needs care! She would make a great nurse or therapist or caretake of some sort!😅❤

[@Freyasluckyarm]

She is really attentive.

[@phyllismontoroula6454]

You great family I know you love your children I watch your video all the time

[@NANAOF252]

I'm praying for you and for and for Freya.

[@amandamaynard3514]

i"m sorry for your frustration! Hello to Fiona, Jesse and Freya!! Take care!!

[@lisabeaver2919]

And Liam too.

[@DonnaKillin]

Hope both Freya and Jessie get all the way better soon. I’m sure it is frustrating to not know what is causing your baby girl pain and for her not to be able to tell you what is hurting. Sleep deprivation probably makes everything feel 100 x worse.

[@allthatglitters4111]

She’s so precious xx

[@jeancooper5386]

Hope both the girls are feeling better soon. Hang in there you are the best mom when it comes to your family.

[@biddiemutter3481]

4:21 her giggle ❤

[@lisabeaver2919]

It really is the cutest laugh..

[@a.life.reimagined]

Ugh, I had that a couple of days ago. Mine came out the other end and had a fever for one day. Then it just went away. You guys are awesome parents❤❤❤❤

[@SmilingBeaver-ou7nc]

Prayers and Hugs to Freya and Jesse ❤❤🧸🧸🙏🙏

[@lisabeaver2919]

Yes. I second that...❤

[@Alwaysherethere]

I hope they feel better soon!❤

[@suemuster9826]

I'm praying that Freya and Jesse feel better soon. ❤❤❤❤

[@user-InspireEllen]

May be toothache. Oh dear sorry, I hope Freya feels better soon Marci. Jessie is very helpful, thoughtful too.

[@BrendaEaster-c8k]

My daughter cannot tell you if she feels pain, as she is non-verbal. Best of luck to you and your family. Can you test for yeast infection with an otc test? Do think Freya might be having a seizure or headache, and I don't want to sound like the medical staff that you deal with, not at all. Has she had a scan of her brain? My daughter has mycrocephaly and I suspect she has headaches but she cannot tell me, will deny pain. Again, God bless your efforts! And, yes, I too think it is unfair my daughter was born with a syndrome, and she is now 35, and the sense of unfairness never really leaves you. I am a stay at home mother now as I am her main caregiver. The trick is to try to accept the syndrome and love the child. Trust me, I am still working on this, it is going to be a lifetime gig!

[@trish7080]

Freya ,her sleepy face, so adorable ❤

[@JaniceTaylor-it3ed]

I’m praying for you Jess and Freya ❤

[@biddiemutter3481]

Poor girls, I hope they are doing better today... I forget how much time there is between the average post and the events in them... I 'm rambling, sorry!

[@debmc369]

I am so sorry this is happening to you all. Praying for ya'll ❣️

[@ReginaK2]

I would look at it as Freya is a baby and babies can’t tell you what hurts. I do understand your frustration. I would tend to think that she’s getting ear pain as that was the last procedure she had done but you’re right, you do have a much better idea of what is going on… much love and prayers to you all and a great big bear hug for Freya!💓💓💓💓💓💓💓💓💓

[@eileenmc8808]

💜 to you all, purple for Jesse.

[@micheledavis3735]

...just all my heartfelt love and prayers for you all...Never lose sight of your bliss...

[@sabrina19ization]

Prayers ❤and use Tylenol it's safer for the kidney prayers in Jesus mighty name

[@antjeneumann17]

Oh no..poor kids..hope they get well soon..it is hard with a non speaking child, because she could not tell whats hurts..it is great that Fiona got there too...

[@bettysutton3376]

God bless you and your family 🙏❤️🙏❤️ get to feeling better ❤️❤️🙏❤️🙏😊

[@Angela-zp2gy]

I hate this for you. I pray you figure it out or preferably she just gets better. I had a miserable migraine today. The humidity and extreme heat bothers me. Glad Jesse is better! ❤❤❤

[@evonnewhalen9794]

Cute outfit Freda. I hope you feel better soon 😊

[@Alejandra.151]

hello! I congratulate you on your children, I was watching old videos. I wonder if Freya can walk? kisses!

[@Freyasluckyarm]

She can’t. She scoots and crawls to get around

[@ivar_23]

Freya is smiling and looks happy today ❤ . Hope she will get better 😊 . Please do post an update tomorrow if possible. Love Freya's videos 😊

[@beeintelligent3259]

Well, if it’s any consolation, where I live, every thing is at least a hr away! Get well soon Freya! ❤. It was most likely a tummy/intestinal bug! Oh, and mama, it is so hard when your baby girl can’t tell you where it hurts. It is frustrating and scary! 😢

[@mariannebrand4635]

I wish I had a Freya to cuddle with.

[@philipbrazis8732]

Ruth here, when they are little, can't tell you, my mom said, it's hard l agree, thanks for sharing

[@Milaperadotti]

Could it possibly be a migraine or some kind of stomach problem? My daughter was recently diagnosed with epic stomach migraines, which is where you will epically vomit and it goes along with regular migraines that could possibly be a problem.

[@phyllismontoroula6454]

I hope everyone feels better soon

[@colleenford5398]

In addition: I find that some of us have been here awhile and would never try to diagnose your children, as with any Momma...she's with her kids more than anyone...MOM'S KNOW what is happening with their kids!

[@pamelaholdsworth5866]

I know how you feel. My sons school will tell me that he is sick and I will take him to the doctor and the doctor will tell me that there isn't anything wrong. We've done that before. It is frustrating. Hang in there. I hope all of you feel better soon.

[@biddiemutter3481]

Lots of love

[@lisanevins3605]

It's always a good sign of you can control a fever with meds. As you said it will get better or it won't & you'll find out what it is.

[@dawnrex3712]

Maybe Freya has a bit of a tummy ache too, without throwing up. Poor little thing, I wish she could just point to where the pain is to give you a clue. Hopefully she feels much better soon. Nothing much worse than screams in the night with little ones. One thing is for sure, you have four of the cutest children ever. 🥰

[@DesMowadeng]

Take this or leave it, but something that might be a helpful indicator of something going on with Freyas Kidneys or bladder is if she gets really still before going potty and/or stiffens out. If she stops suddenly it could be a sign that it's painful to pee to the point where she notices it. If she stiffens out and is inconsolable that might be more a sign of a sudden sharp pain. If I get sudden sharp pain it almost always throws me into full body stiffness/spasm. It's definitely not a fun experience and really painful!

[@suegibson1960]

Gosh I was thinking along the lines of night terrors but you see signs of pain. Look at her now!

[@betsybabf748]

I can not imagine an hour drive to take my kids to the dr. My pedi is 7 or 8 minutes away and our hospital is 5 min away. That alone would be frustrating. I've always suffered severe migraines as do three of my children. A neurologist trick we used with our kids is when they first felt one coming on is to put hands, and feet if possible, in ice water. Where a true migraine is caused by the over-dilation of blood vessels, the cold on the limbs helps the blood vessels start to constrict, easing the migraine. That trick from my neurologist, with OTC meds kept two of our children off prescription meds. One son does requires prescription meds though, including a migraine preventative daily.

[@V.I.C.]

6:05 That was totally a ghost!! 👻👻

[@Freyasluckyarm]

Right?! We have some loved one that look over Freya

[@christahodge6023]

Prayers

[@MelissaHotaling-z9c]

❤

[@biddiemutter3481]

10:38 oh goodness, I heard the jingle and mistook it for a baby bird in my flat! Seriously though, I am listening to your frustration xxx

[@kazholt1]

❤❤❤❤❤❤😊

[@suegibson1960]

Amazing how different the world is…I have a friend auth downs and when she doesn’t feel well points at every part of her body if she’s not well. So not sure which is worse!

[@christinavonheidenstam3206]

Get well soon

[@BonnieLetourneau-zi7es]

Praying ❤

[@evonnewhalen9794]

It could just be tummy cramps from being sick a few days ago. Have they ever checked her for kidney stones

[@BrettFlores-z5s]

I've got the bug as well but I got medication from the hospital 🏥 and I'm still in diapers size large extra large