The mental toll of appointment days

[@diaries.of.a.Broken_Angel]

Hi Marci, it’s definitely tough! I am not a medical needs parent, but I am a disabled 60 year old woman and I feel it just the same! People just don’t understand the grief that comes with disability, nor do they understand what it’s like to go to specialist appointments on a regular basis with new or progressive symptoms, and how devastating it is when you are told that there isn’t really much you can do about it. The plan is constantly changing and evolving. For me the huge challenge is that no matter how understanding my husband or my family is, I still feel alone because there is absolutely no way that they can grasp even a bit of what I experience on a daily basis! I hope you can find understanding and support through moms in similar situations. Thank you for sharing your beautiful family, as difficult as the journey can be, you are helping so many by sharing. I send you blessings of strength and peace along your path! 🤗🌸

[@Angela-zp2gy]

Me too. No one completely gets it not even my spouse. We do our best with what we are given❤

[@Freyasluckyarm]

Thank you so much

[@allisonsadler719]

​@@Freyasluckyarm I'm disabled to its tough I know the filling , you are awesome

[@ConnieinMontana]

I care for my husband who has dementia. I feel your pain and grief when one must address the inevitable future. You are a wonderful person and a great mom. My thoughts are with you.

[@tinahauser8864]

Marci, every time I watch one of your videos I am completely blown away by how well you keep up with everything and take such great care of your family. We all have a breaking point where we just need to let it all out.

[@Freyasluckyarm]

Thanks so much 😊

[@karenligus8224]

I get it completely. I'm 59 and disabled. My appointments exhaust me completely. It's hard to keep going over the things that are so emotional and exhausting to begin with. And it's only natural to look at the future for your medically complex Freya and all your kids. As mothers we want so much for them. Seeing her stand there my heart stopped! I expected her to walk off...and with therapy she may walk off one day. It seems no matter how far you get, there's always more questions. I'm glad you can talk with Chris and hope you give yourself time to grieve when you need it. All Mom's need a break sometimes! ❤

[@Freyasluckyarm]

Her therapist was completely shocked with how well she was standing

[@tracyfinch918]

I’m disabled as well with several different things. I’m 57.

[@marciac7457]

You and your beautiful family are in my prayers. You have every right to feel emotionally drained and scared for the future at times. Freya was born into the right family. You are a wonderful mom. Make time for you when you can.

[@maryjones1]

Freya showed some very impressive can dos. She stood against the wall unassisted for a good spell, and looks more and more comfortable walking and climbing each week. Good job Mom and Freya. 😊

[@Freyasluckyarm]

She is doing great

[@biddiemutter3481]

5:14, big, gentle, virtual hugs. Xxx May God bless you with surprising joy this week.

[@pamelapeterson7693]

You're doing the best you can!!!! Sometimes we all just need a good cry!!!❤️

[@michhart4237]

Sweetheart you have every reason to have a wobble day. You are human and holding your emotions in on a daily basis. You are doing brilliant as are your kids and husband. Please don't see crying as weakness, I was brought up that way and I now know it's not true, everybody is entitled to cry and it is not weakness. All my love from uk. X

[@joytotheworld2100]

Marci, we know it is so hard for you. Not surprised to hear this. But i am sad for you because it is so hard. I am disabled and absolutely hate doctors appointments and tired of all the repeated labs. Never a treatment plan because they cant do anything for me. I wish i had a wonderful mother like you. Your children are so lucky to have you. Im sending hugs your way.

[@Freyasluckyarm]

Thank you so much. I wish it was easier for you

[@a.life.reimagined]

My daughter had seizures, it was phenobarbital and it make her so cranky. I think she was just tired all of the time. I'll be praying for you all.❤❤❤❤

[@Freyasluckyarm]

Thank you

[@kathryndomer2109]

I wish I could give you a great in person hug, and a Chocolate Cream Donut. You are a beautiful woman and entitled to an occasional break down. I’m Catholic, so my Rosary comes out and seems to sooth me. It’s a beautiful Sunday here, I’ll do something outside for sure. OMG, those cookies look so professional. Take care of yourself and Happy Thanksgiving. Love you, me 💋💗💕🧑🏼‍💻

[@dreamtshirt]

Hi Marci, you incredible person. It’s so great to hear you let all the grief out and acknowledge that your life is difficult at times. I hope that you find some “me” time in your life. Sending you love and hugs and huge admiration. ❤

[@christahodge6023]

Freya is doing so good and getting stronger everyday. Thank you so much for sharing all of your lives with us.

[@NANAOF252]

Freya looks so cute in her outfit and shoes o would love to het thevoutfit for my granddaughter. You are always in my prayers God is your strength. Lean on Him

[@kimcheek8027]

Awe Marcie, you are so graceful & beautiful! I can only imagine the constant stress and anticipation of what’s coming… Remember to be as kind and gentle to yourself as you are with other people in your shoes! 🥰❤️🙏🏼

[@Freyasluckyarm]

So true! Thank you

[@crystalbutterfly4812]

You are an awesome Mom and yes you will have breakdowns its like me dealing with Cancer going to appointments. Do something for yourself soon. Liam was awesome and glad you had him with you. Remember ask for help and know that God would not have given you Freya unless he knew you could not handle it.

[@annalangham3950]

Your allowed! This is part of having a child with disability. It the fear of unknown loosing her ..her hurting she a child no matter what It's okay talk to other parents share your grief and frustrations hurts what ever it is !! YOU Got THIS! Hope this helps 😊

[@patdrake8859]

I make this short because you know I am sending all prayers for all of you, but esp. to you. Keep up the good work!!

[@suemuster9826]

You are one amazing Mom, Marci. I know you stress out over appointments for Freya. I can see it, but you rock it. I understand the anxiety of doctors' appointments, and I have bad knees, Interstitial Lung Disease, and a heart murmur, not to mention just old age problems. Take on day at a time and keep on going. Love you guys❤❤❤❤

[@kathyrineholt4457]

Praying for you and your family. Please know that you are an amazing woman and mother. When you get down always remember you have your your fan base to bounce things off of. BLESS YOU.

[@crystalIzed333]

Hugs! I remember all the appointments and how hard it was. See you all next time!

[@pammorris2868]

Ur doing such a great job with the plate you have been handed!!!!!

[@SimplyRochelleParanormal]

I think those PINK SHOES ARE ADORABLE ❤ They look comfy too! It's ALWAYS so hard to tell if shoes are comfy, BUT YEAH my daughter and MYSELF are THAT way as well naturally ❤😂😂 I mean enjoy the piggy's in the sand as MUCH as I CAN WE say 😂😂 💯 ALL Ur kiddo's are amazing lil humans ❤ I always enjoy Ur content Marci! And GIRRLLL U had a BEAUTIFUL garden this past season 🩷 I can't wait until ALL of my season jar's are filled with MY herbs in them!! I love to garden, it's a sanity "Keeper" at times HERE ❤😂 We are LESS than 48 hrs until Turkey Day 🦃🦃 and we gobble TILL we wobble ❤❤ I can't wait for ALL those smells to be in the Air and it's for US, our tiny family of 4 with a few additional ppl that are friend's that became family. I hope that Ur day goes smoothly and U get to relax some and enjoy Ur day Happy Thanksgiving ❤❤🦃🦃❤❤🦃🦃🩷🩷🌴🌴🩷🩷

[@Freyasluckyarm]

I love that. I can’t wait either! It’s a great holiday.

[@carolynwalker9920]

You’re an amazing woman and mother from what I can see but you’re still allowed to have off days. It is hard I’ve got a daughter who has ASD and I have been to hell and back but now grown up she has become a very caring person. Keep talking about your hard times as it does help to deal with them. Love you and your family so much ❤❤❤❤❤❤❤

[@lweaver8254]

I understand. My little girl is 3 1/2 she was initially diagnosed with CDLS, but then later with SMC1A neurological developmental disorder, the gene just mutated a little differently then it dose when it is CDLS. She’s on 4 seizure meds and a keto diet and is a very special little girl, just like freya, a gift. She teaches us how to live one day at a time and to find all the blessing and beauty in our experience. Also, when Freya started vocalizing in the beginning of the video, so did my little one similarly, so sweet. ❤️

[@Freyasluckyarm]

That is so wild. I didn’t know that you could have that gene change but not have it be cdls

[@lweaver8254]

Yes we were really surprised. We took her to the Children’s Hospital of Philadelphia to their CDLS clinic and their genetics team said they have given her type of mutation its own separate name. There’s some overlap. It only occurs in girls, and they think there may be a few thousand globally. We thought she was a CDLS baby for almost 2 years! So CDLS families are special to us! Keep going and loving through the very hard moments and days. It is such a day by day journey of struggle and love.

[@sherry8894]

There's little miss Smiley! I just love her so much! And yes, I for one, would love you to go live! Love your family, and you're an amazing mom! I really admire you Marcy . Looking forward to your next video! Sending you all love from Ohio ❤️❤️❤️

[@TCU1]

On behalf of my medical mother and entire family…WE SEE YOU, Marci! Love you!

[@Roro19609]

Marci, Thank you for sharing what you’re feeling. I can relate to how you feel at times. Being a 24/7 caregiver myself for the pass 3 years to my husband hasn’t been easy. He is totally dependent on me for all his daily ADL’S . He has lots of health issues. Some days are harder than others. You just have to wait and see if tomorrow will be better. Many days are played in your mind like rerun’s. It’s a hard life. I do have more military support than family support. It’s a lonely life and miserable at times. Marci, you probably get tired of hearing “ what a strong woman you are”. But you truly are. You not only care for one child but to 3 other children. Take care. Lots of love and hugs from Bradenton Florida.❤😢😊

[@Unknown5925-]

I lived in bradenton,FL for 5 yrs. I've been back home now for over 10yrs.

[@Roro19609]

@@Unknown5925- where is home now?

[@paulined4190]

Thanks for explaining Marci, it's important ❤

[@Freyasluckyarm]

Glad it was helpful!

[@gaylebang7310]

You are normal I wish I had someone to talk.😢

[@KathyRopa-uk9ws]

Very helpful video. Thank you for being real. God Bless.

[@NJEklerben]

I am sad that you have to relive trauma. That is hard! I have no words other than to say I love your family. Your children are all so unique in their personalities and I agree that Freya has helped shape them into the caring human beings that they are. I can see how much you love Freya and why she brings so much joy to your family. I also think it helps to hear things from your perspective, and it makes us all think a little bit more about how something so small as a text or an offer to watch your other children after a tough appointment could really help somebody out. A small act just to show that you care....

[@brendabolin7178]

Seizure medicine when I was young made me wild. It definitely affects you. I'm so sorry you are going through this 😢

[@Freyasluckyarm]

Thank you

[@christinegallagher2536]

Oh Marci, I could not do what you do, you are so special and I can only imagine how difficult it is for you.

[@jguitar23]

I think it helps to try to focus on the gratitude side of things if possible. (I know this sounds old-fashioned, it is a time-tested technique. Could call it reframing.).We are lucky to visit Dr's when so many in the world have little or no access, for example. For the little things too like hugs & basic comforts. This is a way to step away from the grief aspect.

[@Freyasluckyarm]

I can be greatful for doctors and still feel sad that it is a necessity for my daughter.

[@dragonladyhs75]

Sure glad both you and Freya’s day got much better! Doing a great job there Marci!

[@charlieoglesby3468]

Honey you're a wonderful mother. It's hard having 3 kids in It's self then you add in a beautiful handicap child. I couldn't imagine. You're my hero. You were chosen by God to be those kids momma. And you deal with a lot. Chris is supposed to be there so you can break from time to time. Be there for each other. Your family is beautiful and wonderful. Love and prayers for you all. You're special Marci 😊 #fanforlife❤

[@karePerry]

Marci: i hope the surprise kare package that i sent your family helps you laugh a little and ease some of your sadness. i do not understand YOUR sadness and the almost daily grief you deal with as your love Freya but appointments smack you in the face and heart as you accept what she cannot do and face head on whatever new thing you need to watch for or teach her or know that there's something new that you feel as a loss and it creates the grief reaction in you. It's all very understandable. God bless you and keep you in her/ his arms. kare Perry from North Canton, Ohio. 💜🫶🙏

[@DebraGiangiulio-et7up]

Sweetness I just want to say I hear you. From what I see you’re doing such a fantastic job and I don’t think a lot of people can even fathom what it’s like to have a sick child. I just wanted to say you’re a freaking rockstar & gorgeous to boot. You were chosen to be her Mama Bear & you are doing an amazing job at it!!! Love & Blessings for your family…🖤💗🤍

[@traceypoller55]

Awe hun yes you can’t be strong 24/7 but it’s ok to cry, be upset etc you will plough through because your a fantastic mom ❤

[@chantellegattrell7073]

Due to a bad car accident I have physio twice a week chiropractor twice a week kinesiology twice a week and counseling once a week. It is so draining I know all you guys feel and especially having a little one that has to go to appointments it's so hard sad and draining at times but you guys are so awesome

[@kimcheek8027]

Thank you for sharing your loving honesty with all of us ❤

[@Freyasluckyarm]

Of course!!

[@marilyngaeta1362]

Oh Marci, I wish I had some magical words to help you when you are having a difficult time. Please know that I am here and love you and your family.

[@bettysutton3376]

God is with you he is all around you he is there to see you though he will hold your hand he also gave you a beautiful family 🙏❤️🙏❤️🙏🙏🙏

[@tonyafromgeorgia3519]

I get it, It’s a sad fact of life when a child has a disability, every parent wants their child to be ok and live a normal life. Not only are you the parent you are also the care taker of a child with disabilities, it can suck the life out of you with all the non stop worries you face. On days where you have serious doctor’s appointments, it’ll put a lot of thoughts into your head to think about and ponder on, and maybe you can’t stop thinking about it, makes u feel overwhelmed, stressed and maybe even lonely, as if your having to be the main one to handle all of these thoughts because your Husband is out supporting the family. It’s a normal feeling and I agree, it certainly helps when someone, anyone puts their hand on your shoulders and tells you it’s going to be ok, gives u a hug or any kind gesture. YOU NEED THAT!! Everyone of us needs that from time to time, we’re human. Im sending you a Virtual hug, It’s going to be ok. Not to say it’s not going to be overwhelming sometimes, we all face challenges. It’s how we handle those challenges is what counts. Try to make some “ME” time and don’t feel guilty about it any chance u get! Your an awesome mama and are doing a great job raising those sweet children!🥰

[@Mari-ek7su]

Oh Marci know that you and your beautiful family are always in my thoughts and prayers 💜🌻

[@mtrevino3993]

Ms. Marci sometimes that “release” is needed. You are awesome! Please know that when I’m not having a so good day and I see you and little Freya have posted you make me smile and make my day better. I hope that us watching does that for you. I send you a hug and look forward to your live. ❤

[@donnathomson4048]

Oh Marci, my heart hurts so bad for you. Taking care of everyone doesn't leave much time for yourself. Breaking down now n then is still so brave. Wish I could hug you ❤❤

[@Brandy-dx1on]

Hi Marci just wanted to say stay strong and put it in God's hands ❤that's what I do when I have a bad day ❤ps happy Thanksgiving 🦃🦃🦃🦃

[@jackielong9927]

I have a son who is a quadriplegic and appointments are hard. ❤❤❤

[@Angela-zp2gy]

Sorry...its not easy with typical kids but when there are obstacles its huge! Everything you feel is valid. You look so capable all the time. Sharing helps. Always know that you're doing the very best you can❤❤❤❤❤

[@Cheekylory]

Oh goodness Marci, I wish I could just reach out and give you a hug. Sending you love from Oklahoma City ❣️❣️❣️

[@pattijareo7423]

You give so much to everyone around you all the time, including sharing your precious family with all of us on your channel. I pray that we can give a little back to you by loving you, praying for all of you, and acknowledging that we hear YOU too. Blessings, Marcie! 💕🙏🙏💕

[@Freyasluckyarm]

Thank you so much!

[@donnataylor980]

I will be praying for you and your family. It's so heartbreaking I cannot imagine how you feel😢 you have a beautiful family all your children are precious❤ you are a wonderful mama❤ the good Lord will give you strength for this❤ see y'all in the videos I don't always comment but I'm watching❤😊❤

[@kimcheek8027]

Liam was such a great support man for you the day that you took Freya to the Neurologist! Your children are such special, loving & remarkable people!!

[@Freyasluckyarm]

He really was! He is the best

[@jeanettekennedy7433]

wonderful video thank you for showing

[@Unknown5925-]

Marci, you are an incredible woman! Im sending lots of hugs 🤗 your way! If i lived by you, i would give you a big hug. Moms need a hreak once in a while too. I also have a disability and somedays are worse than others. No one knows but you, really, how difficult somedays can be. It saddened me today to see you sad. I dont leave many messages but i just want you to know that your an incredible mom. Take time for yourself from time to time. You and your family is always in my thoughts and prayers ❤🙏 🤗

[@Freyasluckyarm]

Thank you so much

[@colleenford5398]

I can't imagine what you go through Marci. BUT HEY! We're here...lol! It's not like you're real real friends at home, but I hhope you knoww that there are some folks on here that would gladly just be there to listen. That includes me 😁 when I clicked on the video I could see, and I immediately saw that you had been upset. Much love to you and to Chris and all the kiddos! ❤❤❤❤❤❤😀😀😀😀😀😀

[@Freyasluckyarm]

You're the best!

[@colleenford5398]

@@Freyasluckyarm oh no, not the best, just trying to be a good human being. 😃

[@a.life.reimagined]

Keep breaking down, you need to feel everything, don't shoulder it all love❤

[@Freyasluckyarm]

Thank you

[@shanaibright4024]

Feel Better Soon Marci And Pain Go Away 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏❤️💕💞

[@LynnEuliano]

Did you notice freya was kinda acting up when you started the video when you where sad in front of the camera she knew it she was quiet why you talked the whole time she's definately aware of your feelings but days will be hard sometimes your a great mom with good kids you got this!

[@Freyasluckyarm]

She is very perceptive

[@dzenanzenovic-fl4bw]

❤I LOVE YOU PRINCESS FREYAAA ❤❤❤❤❤

[@jennifergragg1850]

Sending love and hugs to you! 💜💜

[@DesMowadeng]

I just now realized the comment I was going to make yesterday. Since Freya oral sensory seeks she might prefer stronger tastes for the sensory input. That's probably why she willingly took the vitamins.

[@Freyasluckyarm]

Maybe. Hadn’t thought of it like that

[@DesMowadeng]

@@Freyasluckyarm since she really doesn't take much by mouth and has so many allergies I have no idea of a way to test it out but maybe with lemons or even super sour candy that you can get in liquid form (liquid candy tends to be thick). The only reason I thought of it honestly is because I know those who have autism and oral sensory seek tend to like things with strong tastes (super sweet, super sour, super salty etc) and it's typically at a level that most would find to be too sweet, salty, sour etc.

[@ossier2796]

Happy Thanksgiving beautiful family. 😊

[@normeadow969]

Butt your amazing parents ❤️ 💕

[@GeorgeRobinson-m1s]

Would it be any difference is she did not have disability, no its a child i suffer from mental illness as well fasd my mother did all she could raising me and tolerance you need to take it day by day and maybe if it stressing you but her down for nap let her be cranky and you take a mental break then it will be good its like a friend you are with 24 7 its a relationship you both need to work on i hope you and your beloved children all the best thats all we can do 😊

[@KevieG]

Sending Love ❤️ from Texas!

[@pammorris2868]

Bless ur heart

[@susang6193]

Please seek help from a professional and/or support group of other families who have children with disabilities. Your husband and children also have a mental toll when Freya is not well. I live with my own trauma. I have people who I call on when the grief and flash backs are too much. I have had to learn to ask for help when I need it. My people do not know when I need help unless I call. I can pray for you and your family.

[@biddiemutter3481]

Cute outfit 😍

[@Freyasluckyarm]

Thank you

[@cindysutton9194]

❤🙏🏾❤️🙏🏾❤️🙏🏾❤️🦋🦋🦋🦋

[@teresatudelagros2112]

Té veí desde Barcelona y té entiende muy bien, to tengo un hi con salud

[@teresatudelagros2112]

Mental fràgil y es muy aterrador però con el tempo Todó se suavitza, gasta que vine la ola.Besos Fuertes

[@BonnieLetourneau-zi7es]

Big hugs

[@chadandjuliex]

I know!

[@jennbeth1]

You are the sole care provider for four kids. One of those kids has a rare syndrome. You're waiting for the other shoe to drop. Being vigilant 24/7 has got to take its toll.

[@susaneichmann7015]

Do you continue the exercises from physical therapy at home?

[@Freyasluckyarm]

Not in a structured way. Just throughout the day when she naturally wants to

[@marysiamirys7980]

❤❤

[@paulined4190]

Marci, maybe you're grieving for your husband and your other 3 children as well. It is hard for siblings as they start their lives dealing with all of this so as mothers we carry the weight of their pain as well. ❤

[@jswmjswm6715]

❤️💕🙏🏻🙏🏻

[@patriciaharkin1571]

This might sound patronizing but it is meant from my heart. Try not to compare Freya's achievements to that of your other children, it is never going to be the same just like each one of the older children developed at their own rate. Instead focus on the uniqueness that Freya brings and try breathing exercises or meditation before appointments to reduce anxiety. Know that God has a plan for each of us and He never leads us to a mountain that we cannot climb, He will always walk with us. Put your trust in His plan Marci. Prayers for you and your family.

[@lynda2023]

😢❤❤❤❤❤❤❤❤❤❤xxxxxxxxx😊

[@susie934]

You, probably, will benefit from a meltdown every once in a while. The daily cooking for dietary restrictions, gardening, chickens, and 3 school age children with activities. Then you have a special needs child with specialized Doctors and Therapists and those may be hours away so may involve the whole day. I would lose it, at least, once a week!

[@Freyasluckyarm]

😂 thank you