Thank you Morgan for giving your old mom props. And yes, just like the waterboy's moma, I'd still brush my baby's hair if you'd let me.. 😂.. You were so worth every day of the kicking and screaming while I was doing your chest pt, (before therapy vests came along) and breathing treatments and pills and picc lines, All of it!!. Never one regret. You have done an amazing job yourself, taking care of you!! So I'm pretty proud of ya... ❤

@saraboss7981

5 жыл бұрын

Anita Grindstaff ❤️🤗

@hmoore5799

5 жыл бұрын

this is the sweetest thing, you clearly did an amazing job with your kid. You should be one proud mama.

@2listening1

Жыл бұрын

We love him! 💛💛💛💛💛💛💛

I just found your channel through your "5 feet apart" trailer reaction and subscribed right away. Its so interesting to watch your journey through this terrible disease and that you keep a positive outlook and zest for life. you're my new favourite vlogger! :)

Young Adult with CF here, and parent of a child without CF. Completely agree so much with almost everything you say, ALL THE TIME. I wish my parents would’ve made me do my treatments, but oftentimes they did not. We lied to doctors about compliance. My parents worked so hard supporting our income and keeping a roof over our heads that spending energy on me kicking, screaming, and fighting eventually broke them down. I was the kid that’s coddled. My mom answered all the questions, I never had to do any of the work. I was the last to drive a car, I never even got to have a “REAL job”. I had my mom kicked out of my appointments because I learned that I wanted to be honest with my doctor and that I’m literally dying from misusing antibiotics when maybe if I did my treatments properly I wouldn’t have needed them.. the adult cf team though is very insistent on people having a support person. I will say, I do usually like it when my boyfriend comes into my appointments. I never really realized I was bullied until I recounted experiences for my book. My cough was mocked, I got made fun of for needing oxygen, etc.. I think in general the kids who made dumb comments were just really uneducated about cf and I wish I would’ve done a better job of educating people on a level they could understand. Mental health is something I’m kind of torn about. During hospital stays I would be sent psychologists and even given Depression packets because they assumed I was depressed when I wasn’t. I was a very quiet kid and didn’t ever know how to form my own opinions. As an adult now, I do believe I have some form of PTSD and definite survivor’s guilt. After having my child I have become aware that I do have a severe anxiety problem and do struggle a lot with major life changes (death being the biggest). I don’t think it’s right the way pediatrics went about the mental health issues trying to be sneaky and lying about stuff. I do think it’s really helpful when the cf team or family and friends ask how I’m doing and what I need. Anyway, tried to keep this short but even though a lot of our experiences are so different and also very much the same.. I love watching your vlogs as a sort of therapy and something to relate to. It’s really nice knowing someone “gets it”.

As a mom who has been doing this for 25 years I just wanted to say... excellent advice. You sound like me. Can I add 2 things?? ALWAYS tell your kids the truth. If they ask "is it gunna hurt?". Tell them the truth. Don't lie. Establish trust. And.....your child's life isn't for public consumption. I find so many young moms who want to tell everyone everything about their childs illness.... about every detail. Don't do that. While there is no shame and you need to own it.....let your child dictate what they want shared and with who. I had to learn this as my girl got mad at me for "over sharing". And she was young. So. Let don't give your child's life be handed out to everyone. And THANK YOU FOR ADDRESSING THE ISSUE OF MENTAL HEALTH! The doctors don't prepare you for the self destructive behavior that comes with CF. It hit us like a ton of bricks and broadsided us. We were not prepared. There are 3 things I try to hammer into the heads of newbie (parents who's kids are 10 and under). 1. Don't bubble wrap your kids out of fear of them getting sick. Let them enjoy life! 2. Always tell them the truth. Don't break the bonds of trust. 3. Be prepared for the backlash of mental health issues. That they will probably go off the deep end. Even if they had the BEST upbringing. So there are a few extras.

@yd133

5 жыл бұрын

Thanks

I feel like I have to reply to this entire video, point by point as a parent of a teenager with CF! I feel really lucky that we have the CF team we do. It's the only one in the state and they are incredible. They all meet and share their patients info so we get the experience and ideas of everyone. All the Drs are great, all the nurses and people in the lung lab are great. My kid's CF doc is the sweetest, kindest, most lovely, caring man. I agree with the treatment thing. It's what works for us. I'm a hard ass. HEALTH COMES FIRST! No beating round the Bush. No rewards, no pity. I also will tell everyone and anyone about CF. I've spoken to kids at the school nearly every year and make sure they all knew what CF was so there was no speculation and it actually made a lot of those kids conscious of differences and of him and they would look out for him. Still you get the asshole kids with asshole parents like every kid gets. I agree on MAKING kids be as independent as possible as soon as possible. That is such a huge thing I think. My kid is 13. I keep my mouth shut as much as I can in clinic and treatments, I only answer questions he can't answer. He knows all his meds, how and when to do them and what they do, I do as little as I can, which is just as hard mentally to relinquish that control be hands off and trust him to get everything done as well as I would. I just make sure it gets done, but he does the majority on his own. Definitely on top of the mental health stuff too. We found an awesome lady real early even though he started off just playing games and joking around, having regular therapy has become so important. We also have a dedicated CF psych in our hospital who is amazing. Having a kid with CF (as well as other special needs kids, and my own issues, but mostly him.) made me a tough parent and a tough person. Nothing can bring me down, if any kind of situation comes up I am the one people turn to, I am tough as hell and bulletproof. I can handle anything. I am always positive and I can't fail, because I never give up. This is actually a fucking awesome list. 100% agree. Love your honesty and blunt talk. It's the best. 🖤🖤🖤

@beanac9710

5 жыл бұрын

Hi ! Thanks for sharing this! I have a 10 months son with CF, when the doctor told me i cried for 3 days and then i told myself" no more tears he needs you happy and strong! " And here I am, being the proud and happy mommy of the sweetest baby boy ! Sometimes is hard not to be worry or sad... I have so much to learn! Thats why i find this videos and comments so helpful! Thanks again!

CF parent here. Good video. I agree with finding the right doctors they're not all created equal and sometimes they just need to be reminded your kid is an entire human and not just an illness.

Thanks A LOT for this video! My son is 10 month old and he has CF. He is my first. Sometimes i feel overwhelmed and I have been searching information about parenting and CF for a while ! have a good day Morgan ! ☺

I will say this to you. I think a lot of these things can be applied to other chronic illnesses.

@leaveitalone

5 жыл бұрын

Most definitely.

@Kimothy80

5 жыл бұрын

Rhea Galarneau agreed!

@saraboss7981

5 жыл бұрын

Rhea Galarneau for sure

Great video Morgan! I personally do not have CF or know anyone that does, but I've been following a couple other KZreadrs and their struggle with CF for the past couple of years, and I am glad I found your channel. Through watching your videos, I've been able to educate my family, friends and even clients of mine at my work :) You are such a down to earth guy! Which is what I love about all of your videos.I was diagnosed with Tourette Syndrome, and was bullied most of my high school years because I would twitch, or make a weird sound, or say something I probably shouldn't have said, and it sucked. Nothing was ever really done about it. Now that I am 23 years old, I educate people almost everyday about my Tourette Syndrome, when I meet someone new, almost 100% of the time I will tell you right off the bat I have Tourette Syndrome. It's off topic yes, but bullying just isn't right in general, especially when its for something you cannot control. I usually didn't get into fights when it would happen, my brothers would be the ones getting into them for me haha.

Just a heads up, these are all things that ALWAYS have exceptions. Every situation is different. These are just some thoughts and everyone's situation is obviously different person to person.

@blairmarie9872

5 жыл бұрын

Great Christmas amp and love the shirt

I’m a teen with atypical CF, when you were talking about not hiding the disease I thought that’s literally so truee! Like just yesterday I was at an event and we had to ask each other questions and they asked what hobby I’d love to do but never did and one for me would be play volleyball but I couldn’t because of CF and asthma and they definitely didn’t know what CF was so I had to explain and I find it cool that I can comfortably talk about it cause it’s something I’ll have forever ( hopefully not but oh whale 😂 ) 🤷🏽‍♀️

All great! This is great for parents of children with any chronic illness. I have epilepsy and a bleeding disorder and these fit in exactly with what my mom instilled in me.

I really hope you hit 100k soon! You have a lot of not only advice, but a great attitude that could help a lot of people. Your videos always brighten my day!

Great advice about drs! I’m 60 and have been experiencing a lot of the negative stuff you addressed and have developed anx about the whole thing. Thankyou for the confidence booster.

These tips can apply to children suffering from any chronic/terminal ailment. Great video. The vibes you share are amazing and your channel is an honest and straightforward. Btw, just loved how you dog waltzed right in the shot. Keep up the great work and keep the videos coming.

This video is bomb ass good . I just love you so much for giving these advices. Wish my daughters father heard this 18 years ago. I seam to have followed your words during my kids growing up having cf being autistic and one of them trans. And they really had a hard time mentally and their dad just said that ; get over it and got angry and violent. So I left him and I kept fighting for my kids, I swooped doctor from a beloved specialist who no one would question ever, but he was a old school patriarchal cold as hole, he new everything about cf... but not anything about autism or even being a little person growing up whit cf and dealing whit severe anxiety. So I found a young woman , she just graduated as a cf doctor and she honesty changed the game for us. Thank you So much 😊 for everything you give us from so far away to us in Sweden 🇸🇪 you are like a cool friend.

I have a five year old child with cystic fibrosis. She is going through the stage were she don't want to do her pumps and with little attitude. This advice is great I have been following you for ages and you really help. So Thank you

My dr used to split the appointment so I could talk about my issues and mum would be able to voice her worries. I do it all my self and have for years my mom passed and I could still cope she was very proud of how I Managed my care.

This is so true for other conditions as well. You are so right!

You hit most of that on the nail and I agree with the beginning of it mostly you have to get a doctor you feel very comfortable with and that they treat your child with respect I was a single mother and there were a few doctors that treated my children and I like we were last because I didn't have a partner very emotional abusive towards us we did have a couple of good doctors but I will admit it was the nursing staff that was the hardest they were so awful always short-staffed and would take it out on you but now that he's an adult his care is a hundred times better he's treated with respect we are treated with respect and he really gets good care now and I agree with not rewarding your child for every little thing doing your treatments is like taking the garbage out it's a chore you have to do my son is autistic so I will always have to hold his hand but I agree with you cut some of those cords let them do things on their own I do that as well with my son to a point they have to learn your mom is a good mommy and she did right by you ❤🌹

For everything you say and do to help. Sincerely, thank you.

Great! I have a 10 year old CF daughter. She is now starting to get responsebillity in her treatment on her own. Yes, I have to still nag her every day, but she is now connecting tubes and grabbing her meds without me laying everything out for her and at dr. office SHE is the one spoken with. I just confirm facts:) She is great, does never complain. Happiest girl in our house.

It was always a battle to get him to do his treatments. We went to a therapist to help us with the struggle between us when he was in hes early teens. The hardest thing for me was backing off and letting him take care of all of it. And when he moved out it was hard for me. I couldnt hear hes cough to see if he was getting sicker or not. Once my son started having to drag an oxygen tank around, I could not get him to leave hes apartment. Very good advice. He is now on hospice and living back at home. Hes 27 and he is struggling with hes mortality. This is the hardest thing I have ever had to do. I'm on leave from work to take care of him. He is depressed. Hes mad. It's so sad to watch. Watching him struggle is hard. Thank you for making these videos. Which I had these to watch when my son was young.

You rock CF . I AM 43 N GOT HELP N IT HELPED ME

YES! NO REWARDS FOR TREATMENTS 🙌🏻🙌🏻🙌🏻 Say it again!!

Wow my mom needs that last tip. That hit hard. I’ve been suicidal a couple times and she just told me it would get better.

Hi Morgan. Good to see you. I recently lost my niece at 26 yrs old to c.f.. just want to say god bless you. Love listening !!!!! Thanks

I don't have CF but I saw one of Claire's videos like 4 years ago and ever since that i have been trying to educate myself on this so that I can help if I ever need to and your videos are grate on it, thank you so much for educating me and others on this. :) Also your tattoos and your dogs are cool as fuck

Non-CF Non-parent here: The only thing that I kind of take issue with (and I don't even disagree) is the not allowing self-pity. I think you have to be careful with pity vs.acceptance. Part of accepting a diagnosis is going through the full range of emotions about it; probably multiple times. If you try to force someone through, or pull them out of that process too quickly, it can lead to mental health issues. Also, as someone with mental health issues, if you want your kids to come to you with the serious stuff, you have to be approachable. You can tell them you'll always be there and support them no matter what until you're blue in the face, but they have to feel it and you have to mean it!

@Katie-jm5sd

5 жыл бұрын

agree. But there's no point in pitying yourself because someone out there somewhere has it worse, so we may have CF but at least that's all we have. But 100% agree with you.

And I think the reason why parents ask you questions is they want to know from an adult child how to handle their children the way you wanted to be handled growing up it helps them to understand parenting that's just my guess ❤🌹

Love the Christmas amp. Gonna be the new trend. When it comes to your number 2 I agree. For not being a parent you are really intelligent on the subject. My son has extremely bad excema and asthma. One he is more in danger of picking up an infection. So him checking his own skin to feel when its dry is important. If he let's it go he gets massively scabbed areas open areas that bleed. It gets bad. Twi if he doesnt feel his chest tighten and relate that to I need my inhaler then bad shit happens. Three he has allergies to alot of shit that earned him an EpiPen. He will need to focus and hop on it when there is a reaction. He doesnt like it obviously its not fun. Your kids if they have any issues wont like it! The whole learning how to take care of Shit sucks! But dude its gotta be done.

as a person with a lifelong illness (genetic) this can apply to most long term illnesses... but for me with ehlers danlos I have to do physio. no exceptions have to.. if I want to get even worse then sure skip two three weeks of physio and watch as I become almost bed bound for weeks as I fight for months to get back to how I am now... sure wouldn't recommend it... also taking care of knowing your meds and treatments and how to talk with doctors is so damn important... and I love watching your vlogs cause I know you are childfree too and totally okay with it I love that as I'm childfree too and that is how it's gonna stay forever.. furry (kids)friends only! (I have two cats and am waiting for a service dog)

Brilliant!!👍

Hi, I have cf and i wanted to let you know that I love watching your videos!!! They are so relatable especially this one. I totally agree with your third advice. Pitying myself never solved anything. In fact now a lot of my jokes are based on me having cf.

I know you can't have kids but let me just say that EVERY parent in the world should have the mindset that you have of listening and loving their kids no matter what !!!

Good advices! Thank for being so direct. That is real!

Yes yes yes yes this is great! You are 100% on point! This video is great! 💙💙💙💙

Sorry I just saw this. The mental health part really spoke to me. I'm not a CF-er but I have a chronic illness that effected me daily for over 6 years before I was diagnosed. During that time My mental health declined fast while doctors kept mis diagnosing me. I think that those thoughts are like folders in a file cabinet that you keep back in your mind somewhere and every so often you pull it out, on your "desk". Sometimes you read it of a while other times you put it away quickly. We just hope we never start following the "directions".

Lol, I as an adult diagnosis of CF would never know what my parents would have been like if i was diagnosed as a kid. I was diagnosed when i was 18 (on my birthday august 16 last year). Since im Indian (dots not feathers), my doctor was super suprised when i was tested and found out to have F508 homozygous. Now its been a roller-coaster of learning everything to do with CF. My parents don't understand the disease very well, so I have been in charge of my healthcare the entire time. I never grew up with the feeling of urgency or thinking if i dont do these treatments, i will die. I have only recently started thinking about the future, since learning about CF has thrown a spanner in the works of my future plans. After watching your mental health topic of videos and deppression with CF, it was very real. Feeling sorry for myself when i got diagnosed was a really big hit to me. Until a few months ago, I didn't truly accept that this is part of my life now. Mainly because i was a pretty healthy kid, and until the age of about 15 i was asymptomatic. Doctors thought i had asthma -_- I had always known i had salty sweat, and i would notice how salt would build up on my keyboards and skin after a workout, but i would never question why XD

Ember is like...I agree, Dad. Now...walkies?

Awesome video :)

"The crunchy moms" 😂😂😂 I relate to that bully one so much. I would get picked on and stuff untill I learned how to deal with them. (got in some fights) I don't physically fight anyone anymore, but I'll tell someone to stop instead of feeling bad for myself. My parents were always like: "you don't cry when someone starts a fight, you end it" 😂😂 guess it worked.

I had one more question for you do you use the Toby pod or do you do the nebulizer for the Toby and which one are you more comfortable with we use the Toby pod because the nebulizer takes a little too long and he doesn't do it right anyway with a nebulizer it's real hard for him to sit there and really inhale it like he's supposed to because it takes so long with the Pod he sucks it in and that's it it's over with

stan the christmas amp

I love your tats!😍

I’ve learned my lesson the hard way about managing my own care this last year my mom done all of the med ordering dr appointment scheduling she passed away in September

My son is 3 and he doesn't get rewards and know that if he doesn't do his treatments or meds his mucus froggies will get bigger and he will be ill. He sometimes complains but never gets out of it x

My brother has it

you should make a video with your mama

"crunchy moms"..... I'm done lmao

I have a question

Were they really brutally honest about death. I completely agree about doing treatments and not getting a reward but I tell my daughter she will just have to stay at the Hospital until she gets better or she will always have to be at the hospital

@hannilaini

5 жыл бұрын

Always have to be at the hospital? Ha ha. That would be concidered å treat with my little girl. She loves the hospital. Even being poked with needles. Hehe...

Could you do a video about why CFers can't have children?

@MorganSolo

5 жыл бұрын

That's a quick thing I can answer here. Most men are born without the Vas defrans, which is the tubing that essentially connects everything down there. It gets clogged with mucus and essentially that part dies off when we are super young. So, we technically aren't "sterile" and can have kids with medical assistance. Less women have fertility issues (I know a TON of Moms with CF) but it happens to them as well. I'm not 100% sure on the causes of infertility in women due to CF, so I'm not gonna answer that one and be incorrect. I'm sure one of my rad female CF followers can jump in and answer though! :)

@blairmarie9872

5 жыл бұрын

C.f. woman can have kids but some have infertility issues because of the thickened mucus. Some woman have but its harder to carry to term and or many have miscarriages. But again is possible to have children just harder on the bodies..

@Katie-jm5sd

5 жыл бұрын

I have CF and I have a 14 month old son ( no CF there lol) but that is a really good topic of CF. Men are more likely to be infertile than women. Long explanation sometimes but I'd love to see one of those videos from Morgan