Chats about Medicaid and intellectual disability

Hi I’m Marci. Mom of 4 kids. The youngest is Freya. She has a rare syndrome called Cornelia deLange Syndrome. Come along on this wild life as we figure out disability parenting a child with medical complexities and a limb difference. All while having fun and enjoying life.

[@donnahart823]

Freya’s hair is adorable today. And I cracked up with way she was chilling at the table. 😂

[@Freyasluckyarm]

She thinks it’s so funny. I love her tiny toes

[@Share2885]

Such wonderful news. Congratulations on getting some help with expenses.

[@Freyasluckyarm]

Thank you we are very excited

[@cherylmatas3986]

It is so crazy that you had to go through so many hoops just to get Freya on Medicaid! We need a better health care system for medically compromised children. I sure hope your husband can quit his second job soon. Love seeing Freya and the other kids, but learning about all the problems with paying for health care was instructive. Something to talk to my congressperson about as it should be standardized throughout the U.S. so families can get the help they need.

[@Freyasluckyarm]

Agreed! It shouldn’t vary state to state

[@susie4312]

People don't have a clue what you have to do to get benefits. The paperwork, phone calls, interviews, and time. With all you have going on, getting approved is a tremendous accomplishment. I have dealt with the system for over 20 years for my son, in Ohio. It has saved me a lot of money in medical bills and medication.

[@mrsintense1974]

It's time to put a smile on because its Freya time!!! Thanks Marci.❤

[@lynnparrish1335]

So glad you qualified for Medicaid! We’re more than happy to pay whatever taxes may be necessary for such otherwise-financially-draining service! My husband is a physician and we do not accept Medicare or Medicaid because our reimbursements under those programs are low. In fact, most of our physician friends no longer participate in those government programs for that reason. But I would expect that the specialists needed to maximize Freya’s quality of life, given her very special needs, would all take Medicaid!

[@amyb2646]

It is always such a pleasure to see Freya and your family! Freya is so darling! I’m so glad you were approved for Medicaid. I hope it will really help, so that you can all spend more time together! Sending you guys all my love and hugs ❤️ God bless you all 🤗🙏🏼🥰

[@christinedowdle5721]

Freya is just so cute. Love seeing her smile. Seeing her explorer with different objects and play with things, I don't see that she is any different then another child her age$ she is so smart and beautiful!

[@pattijareo7423]

I am so happy about your Medicaid situation! I hope it works out exactly right And your husband gets to say adios to job #2!!!! Hurray for family time! 💕💕🙏💕💕

[@Freyasluckyarm]

Yes thank you!

[@donnataylor980]

❤ you have such a beautiful family❤ I hope your husband can quit his second job.😊 I will be praying for y'all ❤ may God bless you. I love the way Freya threw her cute little foot up on that table😂😂😂 she's a doll. I enjoyed this video. See y'all in the next one.

[@antjeneumann17]

I really hate that insurances don't pay everything for people with special needs. It is hard enough for them and their familys to live with all the disabilities, pain, sergeries, therapies and so on. It is like that in each country. I can not understand it!!! I love the sneak peak in your live not only Freya. ❤

[@ileencapone3288]

Congrats on the assistance with expenses. Love the way Freya is “chillin” while having a snack.

[@cheryls8460]

I just love Freya, but that is not the only reason I watch. I also like seeing you interact with all of your kids. I'll see you the next time!

[@Freyasluckyarm]

Thank you see you next time

[@denisewilliams7018]

So happy Freya qualified for the assistance your family needs and deserves🎉. I don’t understand why some people judge how you raise Freya, but you answer with such grace and tact. Love how Freya just chills at the table with cracker in hand….and foot😂. Hugs from Texas💜🤠

[@Freyasluckyarm]

She is showing such an interest in eating by mouth. And I love it.

[@doloresbingham7956]

I am so happy for your family I’m so glad she got the Medicaid hopefully things will get easier for you be safe God bless

[@kathygrech6739]

Marci - I CANNOT believe that anyone would suggest you discipline Freya, especially at her developmental level but even if she was at the “normal” level for her age. What is wrong with people. She’s a gorgeous little girl who is playing with Mummy’s cosmetics- nothing more fun 😅. IMHO you are spot on with how you care for & mother your special little girl 👏🏻👏🏻👌🏼🙏🏼💜

[@Freyasluckyarm]

Thank you. I pride myself that I have very well behaved kids. Sometimes you just need to see their behavior for what it is.

[@melissamaijenburg3577]

I'm from the Netherlands, but lived in the US from 1999-2004. I worked as a thearapist and special ed teacher in San Francisco. I was shocked then, and after hearing your story, am still shocked to hear how having a dissability (or disabled child) gets you financially 'punished' in the states. It literally makes me sick to my stomach. You of all families should be able to spend as much time together as possible and get extra time to take care of eachother (in order to continue to be able to care for your beautiful Freya - which kind of sounds like s Dutch name 😊)!! Your husband should not have to work 2 jobs! Insane. The Netherlands is changing.... we're getting more and more 'Americanized'. Being sick now costs us money. That's not how our (social) healthcare used to be: everybody used to contribute in order for everybody to get free medical care whenever they needed it. So, everytime I cry about my financial worries (I'm a single parent of a medically complex child with autism. And I have severe rheumatism and osteoporoses. But, I have to work extra hours in order to pay my bills. Eventhough I put my own health in jeopordy by doing that), I think of how things work in the states. And I guess I should be thankful for all the 'free' support I do get here. It's not enough, but at least it's something. I hope...one day....families like yours get REWARDED for keeping your head above water and offering such a safe and healthy environment for all you children. My deepest respect 🙏🙏❤.

[@Freyasluckyarm]

Thank you. It really is a system that punishes people trying to take care of themselves. If my husbands job didn’t pay as much we would qualify for a lot more.

[@melissamaijenburg3577]

​@@Freyasluckyarm Same here: I was taught to work as much as I can to stay an independent woman and mother. The gouvernment keept telling me: just stop working, you'll get more benefits. Isn't that the world upside-down? I don't want to hold up my hand and beg for money! I want to work, because I have the best job ever: I am a musictherapist, working with kids and adults like Freya! It will never make me rich with money, but boy, I am a rich woman in my heart! Thats worth so much more. Tell me...do you have any Dutch relatives? You just come across as a very down to earth Dutch lady 😅 ánd you have a daughter with a Dutch-sounding name!!!

[@melissamaijenburg3577]

Okay I looked it up: Freya is discribed as an old Norse name meaning 'noble woman'. But.....the goddess 'Freyja' also gave her name to our Frisian women (Friesland is a province in the north-east of the Netherlands. They have their own language and very interesting history). I know so many Freyja's from Friesland and now I know why!!

[@lauraneddieable]

Oh I would let Freya do whatever she wanted as long as it doesn’t hurt her. She’s too cute!😊

[@peklin12]

Congrats that Freya qualified for Medicaid! I hope your husband can quit his second job to have more family time 🤗 I love your channel 😊 thank you 🎉

[@Roro19609]

😊❤ so much love and smiles ❤

[@SmilingBeaver-ou7nc]

I'm on disability for bipolar and I get social security disability benefits.It took two years and a lawyer to get approved, and yes it is emotionally exhausting. If we didn't have the benefits I could not afford the meds or extensive therapy.. Love and Prayers to you and your whole family. Freya is an Angel 😇❤💙🧸🧸🧸🧸

[@beckyrhodes8280]

YES !!!!! I'm so GLAD FREYA'S FINALLY going to get MEDICAID she needs it so bad . Great video I love watching your videos even if y'all don't do anything I love watching your family everyday ❤️🙏 things I watch your videos every time I see it on KZbin please keep the videos coming I'll be waiting ❤️ until the next video 💖🥰🙏❤️🙏❤️🙏❤️ HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️!!!!!!!

[@barbhelle5481]

Thank you for sharing with us. I am happy that Freya now has medicaid. Have a blessed night.

[@maryjones1]

Freya’s hair is so golden and gorgeous , in particular today. So pleased that Freya qualifies for Medicaid.

[@Freyasluckyarm]

It is getting so blonde!

[@kathryndomer2109]

Golden and long. It’s beautiful. She’s beautiful. Her Smile would light up a room. I hope you get all the help you so deserve. God bless you all. ❤️🙋🏼

[@letfreedomring2970]

Congrats to you and your family!! Quality time is in the works for you!! God is good!! 🙏❤️

[@donnahart823]

I’m so happy Freya qualified for Medicaid. 🎉😊

[@Freyasluckyarm]

Me too!

[@donnathomson4048]

Hello everyone. Love when freya puts her foot on the table. Soo sweet 😂

[@lindamcauley4728]

You have the right attitude momma. Freya is adorable 😍 💖 💕 ❤️ 💓 💗

[@lynnjackson8367]

Nobody knows your kids like you do so if you know she's safe I trust you. I do appreciate you explaining about the bobby pin though because I was like uh oh...lol. and people expecting you to discipline her like she's doing something wrong....well, thankfully they aren't making those decisions. Man, people scare me sometimes. Freya is clearly exploring her world so I don't understand the discipline thing. You are obviously doing a great job as we can see how much peace Freya has. ❤

[@hollymeyers7796]

You have such beautiful children ❤️ you are a wonderful mother

[@StaindDreamer]

I love seeing all the kids, they are wonderful.

[@paulagrant1073]

Freya is a beautiful girl and has gorgeous hair. Love her smile. All your children are so beautiful and they are so wonderful with Freya. So glad you were able to qualify for medicaid. God bless you and your family.

[@heleenzuidhof8780]

I am also concerned about the bills. And especially about the care and medicines I need. If you are sick chronically ill you really have a lot of costs. I myself have also asked the GP whether I can qualify for an allowance, but my husband has a good job, I no longer have a job because I am currently unable to do it. So I totally understand what you are saying in the video. I'm glad Freya is on the list and I hope it helps you.

[@jacklyn5580]

I laughed so hard at Freya lounging! 😂 So adorable! 💗 Happy Freya qualified for Medicaid too! 👍

[@gerdyproffitt4916]

Love when she is kicked back and had her foot on the table!!!

[@Freyasluckyarm]

Relaxin

[@colleenford5398]

I like seeing all of the family! ❤❤❤

[@fayesteeves9555]

Love you and your family. The children are so sweet from the oldest to the youngest.

[@MarilynHolmes-kj2qc]

Thank you Liam, it is a so easy to like and subscribe to your channel, it is a gift to be part of it. Hope you had a blast at gymnastics Jesse. Marci, you are so very gracious to comment on things that people comment on, I want to add mine regarding why you don't discipline Freya for making a mess with your makeup. It seems like a crazy comment because the fact is, the makeup is before her and assessible so why would she not be able to enjoy the sensory contact and have fun being with mom at the same time. What a praise the Lord regarding Medicaid! I have been wondering if there was any decision so this is such a great thing to hear, Chris maybe can be home more often! Yahoo! Yes, Freya you hair is so cute but then so are you, enjoy the sunshine and flowers and time together, I am completely blown away at the patience, smiles, laughter, and love each one of you have for each other. Looking forward to seeing you soon.

[@kellyburnett1833]

I am so glad to hear about the Medicaid . It will be so wonderful for you to have more family time. I also hope you are able to make money on KZbin, and it continues to grow. I truly believe that you deserve it. Sending you good thoughts always. 😃

[@Freyasluckyarm]

Thank you so much

[@lynnjackson8367]

Arizona is great for home care. I moved from Chicago to Arizona and I literally feel pampered by all my caregiver and nursing services. I'm paralyzed from a car accident that happened when I was 16. Utah was in my sights but just like you said..,there was a waiting list. 3 years wait was what they told me. Would you ever consider moving? Ah.....just got to the part where you are getting things handled. Sounds rough though. If you ever want information about Arizona just let me know. I'm happy to help. Disability is kind of a community of its own. That said, we are definitely in this together ❤️

[@Freyasluckyarm]

Thank you I will. We aren’t too far from arizona

[@amymurray4649]

She’s so adorable 🥰 even if she’s in your makeup. She’s always got this big beautiful smile. It makes my day

[@purpleandred7]

It's wonderful that you were able to receive Medicaid for Freya. When my youngest was born, she had allergic enteropathy. We had home nurses for 16 hours a day that monitored her pump (her only nourishment was TPN) and cared for her during the night while I slept. I know we'd never have been able to afford her medical care without help from Medicaid. She was also able to receive help from SSI. I don't know if you looked into that for Freya but it's something to consider that might help as well. 💜

[@Freyasluckyarm]

We have. In Utah it is income based and since she’s our dependent it is our income

[@racheltessmer925]

Oh, Freya! Hi Marci! Those wavy tresses! So sweet! I will keep praying for your family's needs! Thank you for sharing! ❤ I sense your commitment with confidence, as you navigate the daunting waters of insurance! Humble Thank you for allowing us to share your journey! Love from Minnesota!🐄🐖! P.S. 4-H pigs coming on Saturday!

[@Freyasluckyarm]

Ooh I love pigs

[@susanhebert2461]

That's really good news so happy for you & your husband!! 🤖👼👨‍👩‍👧‍👦

[@Mop5543]

That’s great news!✌🏼❤️

[@Freyasluckyarm]

Thank you we are very excited

[@suehallows9359]

Congratulations getting Freya on Medicaid x

[@whatsupdoc5861]

Such a beautiful family …. From 🇨🇦

[@patriciaharkin1571]

WooHoo, that's awesome news and it's all thanks to you Marci. So frustrating though, that Freya almost didn't qualify, it just shows how inefficient the "system" is.

[@juliemartinez3312]

I didn't know if I've talked to you yet but I love watching your daughter and I am a fan of Sebastian and what you mommies are doing is wonderful and for your child everything is a new experience all the time even though certain things are the same everything else is new and learning play is learning and I appreciate watching your story Thank you so much❤

[@angelariffecrabtree2128]

She is one of Gods chosen❤ i fully understand everything you do and the way you do it and comend you fully because there are alot of women who wouldnt think twice about putting our earth angels away and not even think another thing about it and go on with their lives.to each their own i say but you are blessed that god entrusted her to you. He knows your strong.❤

[@suemuster9826]

I'm so glad you were approved. Yes, spending time as a family is important. Your children are cute, take a video of gymnastics. ❤❤❤❤

[@charlieoglesby3468]

I love seeing all of you together as a family ❤️. All of your kids are precious. I loved the walk video where you were all in the video. Hope everything works out. More Daddy time is always great 👍 love and prayers for you all. ❤

[@cat-zk8bv]

Freya is adorable. She gets away with alot, because she doesn't understand. We get rewarded with cute shots like lounging at the table!! 👣 🤣 😂 We also enjoy your other 3 children's activities as much as they are comfortable being in the videos. Especially family activities and watching their loving interactions with Freya. 💞

[@createconsiderconnect3356]

That thumbnail is hilariously precious 😍 Just chillaxin’

[@daniellecFL]

Freya has the most beautiful hair...gorgeous girl! I enjoy your channel. I wish you would go into more details about her disability. It would be very informative and educate everyone.

[@Freyasluckyarm]

What would you like to know. The awareness day for her syndrome is coming up and I’m planning a video all about it

[@deborahmundt5140]

Hi Happy for you and your family. Family time is very much needed.😂❤

[@caraevans2609]

I’m here for your whole family 😉 I have a physical disability myself so I completely understand where you’re coming from.

[@viwa]

I love your patience and relaxed attitude with your children. I'm sure that makes life a whole lot happier and calmer for everyone, they seem to be very caring children. They are a great credit to you. ❤❤

[@tracihayden5741]

Hi Marci, I'm so happy for you that Freya is able to qualify for medicaid. In Utah who has the power to change the requirements to receive SSI? I know in Connecticut parents can receive SSI for their children who have disabilities. My granddaughter has down syndrome. My daughter hasn't applied for it yet only because medicaid pretty much pays for everything right now, but in the near future she will. Freya is doing so well at eating and she has such a beautiful smile.

[@Freyasluckyarm]

I think it must be our state congress.

[@amandamaynard3514]

Happy news with Medicaid!! I wish your husband can't quit his second job to have more family time🤞Have a great Day!!

[@CWengrovius1420]

I loved her hair & golden hair as well & her waves as well. She is such a happy toddler along with her disability!

[@peaches2839]

I love your relaxed approach with Freya. It makes life so much better, doesn't it?

[@Freyasluckyarm]

It really does

[@jennifergragg1850]

Loved when she was chillin at the table lol! Glad y’all got approved for what y’all needed! 💜💜

[@V.I.C.]

OMFG the foot on the table!!! 🤣🤣🤣🤣🤣 That was the cutest and funniest thing ever!!! Lol She is so adorable!! Thanks for sharing hun!! 😊

[@Freyasluckyarm]

Her tiny little toes 😍

[@juliefreeman4199]

So happy for you being approved for Medicaid. Texas is very difficult to get approval too. My great niece has cerebral palsy and she initially had Medicaid, then one day it was terminated. It makes no sense. She’s in a wheelchair, cannot walk at all. She’s incontinent as well. She can’t really feed herself due to the spastic condition of her muscles. I just do not understand why she’s been terminated. It looks like they will have to end up finding an attorney and fighting for her rights. Ironically, my nephew & his wife can ill afford this, hence the need for Medicaid in the first place. It makes me very glad at least Freya was approved. It seems that those who need and deserve it most usually get denied. Sure enjoy seeing Freya chillin’ and beautiful Jessie. Boy does Liam look like the spittin’ image of his Dad! Thanks for sharing your beautiful family with us all. ❤

[@jennifer_duncan]

I started watching because of Freya, and then was quickly charmed by your whole family. And speaking of being charmed, I loved how Freya threw her cute little foot on the table to chillax while eating her snacks! 😄 Wonderful news about Medicaid! And thank you for explaining how things are in Utah. Definitely quite different here in Maryland. It shouldn’t be so difficult to get the support needed. ❤

[@Freyasluckyarm]

I love her tiny little toes.

[@tammibauer1507]

I came upon your page days ago and I'm so glad I did she is so adorable pretty funny lovable and I love learning about all sorts od disabilities in case I come upon them and or have to deal with them thanks for sharing

[@biddiemutter3481]

I hope that my saying that I am getting awfully fond of Freya is okay. She’s such a sweetheart ❤ her siblings are cute too!

[@Freyasluckyarm]

More than okay

[@janetslicer3637]

Freya's hair has really lightened up! It is still pretty although I loved the color when it matched your color more. Burst out laughing when she just kicked a foot up on the table and layed back. We should all be so lucky! 😂 Congrats on Medicaid. Even adults with brain injuries have to get on a list like my sister who was hit by a drunk driver. 🙄

[@irenedavo3768]

You have a great attitude!

[@hermanklump8983]

Congrats on getting Medicaid! 😊

[@christinegallagher2536]

Glad you can get help with medical

[@Madcaps215]

Wow! That is great news!! I had to go through the Medicaid process for my Dad. I’m his legal guardian as he’s had Alzheimer’s for over 20 years. I took care of him at home as long as I could. The time came when he had to be cared for by a skilled nursing facility. The Medicaid approval process was long and tedious. That’s just the nature of the beast. But, I’m so happy Freya got approved. That is huge!! 💜

[@Freyasluckyarm]

Thank you! It is great

[@jetcitygrljewels9719]

That is wonderful news! Congrats! 🥰🥰

[@hildacardenas-cn2pu]

Like Freyas pjs they look cute on her 💜I also like ur garden 🪴 ur tulips 🌷 🌼 I love planting like spring 👍

[@Freyasluckyarm]

Me too! The tulips are my absolute favorite

[@KevieG]

I love ❤️ me some Freya!

[@clairebear1808]

Oh thank God you got the Medicaid . Oh and I can’t believe Freya hair. Where did the blonde come from how beautiful just like her sisters! Love all of your kids they are lovely 🥰

[@Freyasluckyarm]

Both my husband and I were very blonde as children. My mom had black hair and Freya was born with very black hair. I’m just surprised she has gone so blond

[@jordangristina615]

If you lived in New York New Jersey Pennsylvania Connecticut or California they will give you medicaid in a heartbeat because those States are more generous with Services

[@Freyasluckyarm]

They are!

[@BonnieLetourneau-zi7es]

Keeps her busy ❤

[@marilyngaeta1362]

I am here for your whole family. I am happy that you were able to get Medicaid for Freya. I have said this before but I need to say it again. Seeing you and Freya makes my heart happy. I do have a question though. How did you decide on the name Freya?

[@Freyasluckyarm]

My husband is of swedish decent. We were looking for a good norse name and happened upon Freya and we both really liked it. Freya is a norse goddess

[@tanisha7801]

That’s very exciting new about Medicaid! Really hoping he is able to quit the second job 🙏🏽 I’d love to see a video to know how her communication and speach are going! ☺️ I have so many questions about how she is doing with that! I remember in one video, her teacher gave you the speach book and I was wondering if she uses it and/or still signing? Also, obviously as her mother you understand and know her needs, but because she is non-speaking, do certain noises she makes typically mean certain things? Just wondering if she does use her voice to communicate even if she can’t say words yet! Thank you for sharing your family!

[@Freyasluckyarm]

Great idea! Look for it in the next couple of weeks

[@tanisha7801]

@@Freyasluckyarm yay!! I can’t wait 🥰

[@gwenbrashier8197]

How can anyone say that about you not checking Freya, that is nasty. Freya is beautiful, and her hair is gorgeous, esp braided. ❤❤❤

[@Freyasluckyarm]

I love her hair braided

[@garciamavis2271]

Freya, I like to prop my foot on the table, too! You are a cutie! Your big sister is so sweet and beautiful!

[@tessb3664]

I hope it's ok to ask, will Freya's cognitive development increase as she gets older, or will she remain at 9 to 12 months. Either way she is precious and it doesn't matter, I am just curious.

[@Freyasluckyarm]

Her cognition will increase but it is unknown to what level.

[@ellengill514]

Do you think Chris will be able to quit his second job when Freya starts getting her Medicaid? I pray so. All of the children are so precious and you can see the love they have for Freya.

[@Freyasluckyarm]

That’s the hope! 🤞🏻

[@pennyschwarze6393]

Hi. I have one question you say the baby is about a9 months understanding about how old will she get in understanding sorry I don’t have the right wording. I love seeing all your kids. I’m happy you got some help. That’s all for now. God bless prays for you all.

[@Freyasluckyarm]

It is unknown. Cdls is a spectrum. So it’s just a wait and see type of thing

[@vdeniceeckert3494]

Thank God she was given the extra insurance yay

[@Freyasluckyarm]

Agreed!

[@lisacain9077]

I've been keeping up with Sebastian and his mama and Dad he has the same condition that Freya has she's a very beautiful little girl her and Sebastian I'm just crawled into my heart and I just love them both I've been watching you guys for a little while now and she's just so beautiful if it's okay with you I'm going to keep watching I try to keep up with Freya and Sebastian they're just

[@Freyasluckyarm]

I would love that

[@mariajesusmorales6121]

💌

[@Vale-kg3vd]

Her hair is soo pretty

[@Lifewithpauly48]

Don't worry about the haters lol she is having fun she isn't bothering anyone

[@ruthjosephson3102]

❤

[@shelia387]

She’s beautiful and love her hair

[@lorib4516]

Getting Medicaid should have been much easier than what it was. You should have applied for it when she was diagnosed. As far as the Caregiver payments, I understand that it takes a Long time.

[@Freyasluckyarm]

I had no idea there was that program when we got the diagnosis. Only heard of the other program. Definitely some info that should have been shared with by from our geneticists

[@lorib4516]

@@Freyasluckyarm for sure!

[@colleenford5398]

Oops! Would love to see Jessie's gymnastics.

[@christinavonheidenstam3206]

❤❤❤❤❤❤❤💌💌💌💌💌

[@allisonsadler719]

I sent Freya a parcel from Ontario Canada

[@Freyasluckyarm]

We got it today! Thank you thank you. I can’t wait to put Freya in these cute clothes.

[@katniss1968]

I hope you get tons more subscribers to KZbin so that you will make more money. On another note……your kids are so well behaved which is a rare attribute these days. I love Freya but sometimes it’s a toss up between her and Jesse ❤️

[@Freyasluckyarm]

😂 Jesse is my little ham. She loves to make people smile.

[@dzenanzenovic-fl4bw]

😍😍😍😍😍