Living with End-Stage Heart and Lung Disease (Finding Joy with a Short Life)
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- Опубликовано: 6 авг 2023
- Tens is living with end-stage heart and lung disease. At age 8, he has already survived 3 years longer than doctors expected. His family does not know how much longer Tens will live, but they are determined to make sure each day is filled with love and smiles.
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Connect with Tens' family at / hipsterbaby_pdx
I've watched every video ever posted on this channel, and it will never cease to amaze me how so many people can have to many completely different conditions, so many different missing or partial chromosome conditions, yet none of that manages to take away the persons ability to smile.
Well said!
Great comment!
We start smiling in the womb and even the blind instinctively smile. It's part of us. 😊
💘❤
Moebius (Möbius) syndrome causes an inability to smile. It would be nice if someone with this condition was interviewed on the channel.
When the amazing mum said “There’s a lot of beauty in watching a child die”. It broke me. It’s such a raw emotion and you can see it in her face. Yet Tennyson is as jubilant as ever. You’re all rock stars, Tennyson you’re a rock star chap!
You have to be stainless steel strong to say that out loud about your OWN child....What an incredible Woman and Mother...
Me too. This shows us what this can be like in such situations like theirs. Brave…
@jordynorm8212, me too...never heard anyone say that...trying to understand what exactly that could mean, made me cry and ache.
Parents love their children and ache for them to have the best life regardless. I think some might not understand the devastation his family will feel when someone like Tennyson has his body just say in a way that it is time to rest forever now. It is the same devastation any family feels for the loss of a member whether they have physical challenges or not. I am thrilled for him his family has had the chance to experience life with Tensy after his close calls.
That is truly heart breaking and beautiful at the same time.
I believe Tennyson’s mother is one of the most beautiful spirits I have ever encountered in my lifetime. The depth of her love, the scope of her wisdom and the understanding she brings to her unique situation lights up the life of that sweet child and everyone else around her. She is the real star in the video. I cannot help feeling that Tennyson is courageous, tenacious and spunky because of her. Yes, he is surrounded by a wonderful father and grandmother. Yes, he has a patient, handsome brother who puts up with his teasing. Mom, however, makes his eyes sparkle, his smile widen and, I dare say, his heart keep beating as best it can. There is nothing quite like a mother’s love; unconditional, eternal, infinite…. 💞
Every child adores their mother. It’s precious to see 🥺
@hopeadler507 no not every child
I absolutely agree.
To not talk about the loving father ..
"Mother is goddess, in the eyes, heart, mind, and spirit/ soul of a child" Always remember that
"There's a lot of beauty in watching a child die." Profound words from Mom. 🥺❤😥
when his brother said that Tens likes to watch him self destruct in minecraft and also to make crying noises all i could think was 'ah typical 8 year old brother'. He seems like a sweet little boy. I wish his family all the best and all the time in the world with him!
it is incredible to me how literally every child, no matter their circumstances, still love to mess with their siblings 😂😂😂🤦🫶
I loved how he was putting his hand on every family member who sat beside him. ❤
Tens brought a piece of heaven with him when he came back, it's in his smile! 😮 And as someone with a progressive neurological condition slowly taking all mobility and self volition, your family's love and appreciation for Tenny, and his resilience give me hope. And Brecken is an AWESOME big bro, it's funny how they have a classic brotherly dynamic! Thanks, Chris, for your energy and questions ❤️🙏💞
Just wanted to say: hang in there, because people care about you too! :)
@@WhoAmI2YouNow Thank you very much for saying so, yes I am blessed. 👍🙏
Thank you for sharing a little about your own story. Heartfelt best wishes to you.
🙏❤️
I wish I could hire this lady to decorate every house and room I ever move into. Amazing 👏
I noticed her decor too.
I noticed that as well. What an amazing collection.
That’s exactly what I thought ,she might be an interior designer 👩🎨
glad i'm not the only one who noticed. it's kinda macabre with the frames and the dark green. very much up my alley!
Might be the hubby. Be interesting to find that out. But yea very stylish
The dad may not be great with words but you can tell from the moment he smiles at his son how much he loves him ❤
The technology that allows non verbal people to express themselves is amazing. This little boy knowledge, despite his brain injury is impressive! And the love in this family even more! ❤❤
Brecken- you are an amazing big brother! Tens is so fortunate to have you
Besides the children and people you interview Chris, the thing that has ALWAYS blown me away is the Parents. The amount of LOVE and complete dedication is a miraculous kind of devotion. They feel their disabled child has hung the moon and the stars. I had a very abusive childhood and if I was born with a disability or disabilities my mother would see me as a burden and definitely institutionalize me. So watching all these involved over the top loving parents brings up alot of grief for me. I can't believe parents could love their children sooooo very much.
Chris, have you ever NOT chosen to interview a disabled child due to their less than loving parents??
I find it interesting that the last video on the channel of Angel is both the amazing father you describe that just loves his kids, and also coming from parents who didn't care for him.
He interviewed a family with Peyton, where it appeared the other siblings were glass children.
@@FluffyEclairs yup Peyton came to mind for me also, it's the only sbsk video where the family seemed conflictual and not all love and compassion
The brothers response “work with it” was so genuine. Such a sweet family!
I love the parents love for their child. It’s beautiful. ❤
I didn’t expect “tell me about your son” and tens dads reaction to make me emotional. The love these 2 have for their kid is beautiful.
So, every year he takes another step back from the edge. He's taken 8 steps back, now. Way to go Tennyson! You show those doctors who's boss!
I love his name. It's beautiful. It fits him. And I LOVE his hair!!
I have no words. I am so touched. I prayed for Tens while watching this and I will continue to pray for this cherub in child form. Every time he smiled it lit up my spirit. He is definitely a light in a dark place.
I have an 18 month son with Cystic Fibrosis. The prognosis for this disease in general is unknown but *extremely* hopeful due to very recent advancements. I don't cry much over his illness, even when he was first diagnosed. But everything his mom said was a real stab to the heart. She is so good at putting these things into words. If his mom is reading this, please consider writing a book about your son. You have a lot of valuable things to say, and you're very good at saying it.
I am a teacher and have had several CF students. The newest drug combo has really made a difference for so many. Wishing your family the very best.
Is your kid still doing good?
What a beautiful family, inside and out. I love that dad looks at his son to gather himself when he starts getting emotional. They all seem so humble and resilient.
This hit me so deeply in the heart. I feel honored just witnessing the amount of love pouring out of that family- truly beautiful.
I agree, it's a true honor and privilege to be able to get these glimpses into such loving, thoughtful, inspirational families :)
Tennyson, you are so handsome and have the most magical smile!! I love the way your eyes light up when you are communicating with your loved ones, not to mention when you bring out that magical smile!! It was so wonderful to see you and your family today and myself and my family are sending you and yours lots of love!! 💕
The older brother is an awesome big brother. Great video!
11:55 Awh man, dad's a brave guy. This interview was probably a lot harder for him then he let on.
I firmly believe that God puts special people here to remind us of what is important. Tennyson is absolutely one of them. What a truly amazing and brilliant family.
Isn't it funny how these beautiful children always seem to end up with the right parents !!
Aren't they brilliant? and isn't he a cheerful soul who should teach us all a great lesson in life.
Love you Tennyson - you're fab 😊
From your new friend
Janice 👵 🇬🇧 xxxxx
Unfortunately, many many children are abused by their parents, and a lot of disabled/ill children are given to the state because the parents can't/don't want to look after them. Sorry to be a downer, but I like to speak the truth about the rife child abuse and neglect that happens globally (emotional, psychological, physical and sexual abuse.)
My heart goes out to this beautiful family living with extreme heartbreak AND joy, they are all amazing souls and the love is palpable. I lost an adult son so I know how precious each moment is!
I'm sorry you lost your son. It seems like he had a great parent in you!
So sorry about your loss.😢😢
I choose to see that you now have an Angel looking down upon you from Heaven.
Stay Protected, mate.
The mother is a rock :-) She looks like a very strong person, the best mom Tens could have. And Brecken is the best big brother!
Tens is such a fighter. He has probably come back because he knows how much he is loved and needed. X
He seems to live in the space we all would inhabit if we were smart enough to only care about the most important things every moment. Love to you all.
God bless this family. I wish them all the strength and happiness in the world.
Oh what a beautiful soul, his smile lights up the room. So precious XX
Wow, Tennyson’s smile is precious. Out of all the hardships and illnesses he’s gone through,he still smiles. That’s admirable.
He reminds me of my son and his hair. They look alike. This was so emotional for me to watch but super great family. And yes, it’s better to love and to have lost than not
Tens and his family certainly made an impression. I will keep Tens in my memories as long as I have them.
My God! What a beautiful, precious child! Just gorgeous!
im honestly sitting here in awe.... i started crying within the first seconds. Tens smile is absolutely everything, and the love his parents and brother have for him... just wow. I am so excited to graduate as a DSW to truly begin this work.. much love to the family xo
Hey Tens. Great video, man! It was nice to get to meet you, your mom and your dad. You have such a contagious smile, I found myself smiling along.
Love really does matter. I have a family member that should not have survived a year and yes he has declined some, but we are almost at 6 years! The Dr's say it is because he is unwilling to give up all of us that love and support him
Such an angel!❤
I work with mentally and physically challenged adults. Quite a few weren’t supposed to live past infancy, or at the very most, childhood. So, I’ve seen a lot of miracles. My clients have taught me countless lessons over the years. Not the least of which is that no one can say for certain what your future holds so take it one day at a time and make the most of each day. Tennyson teaches that to everyone who will listen.
It’s absolutely amazing to me how much doctors know, and amazing how much they DON’T know. Tennyson is a beautiful little boy and I truly hope he keeps defying the odds and stays with his adoring family as long as possible. Their love is palpable. ❤
Your videos are very touching but this is beyond… I am so emotional on this one. What Tennyson’s mom spoke hit me deep as I lost my son 14 yrs yesterday and at the end where she said that there’s a lot of beauty in watching a child die took my breathe away. It was in those words that made me realize how life is so short and you appreciate every moment you have ❤
such a strong boy and family may God bless your family even more
Her son is the cutest person and I bet e inspires people every day
I just wanted to say this, these videos you make and the people that you interview give me the strength to go through hard times. Thank you and thanks to all of them.
He’s such a cute kid!! I’m glad to hear he finds the light in life ❤
This child is a beautiful gift from God. Hes here for many reasons. My heart is full ❤
It's her smile that would live with those who watched this video .
Innocent soul.
Looking at the smiling faces of mother and child gazing into each other's souls with pure love and joy is one of the most beautiful things to witness. God bless you both!
I feel so sorry for parents who have children with serious disabilities. It must be so challenging on a day to day basis. I find it remarkable how these families cope. The love they give and share is so precious. Bless them 🙏
haha when the grandma appeared and said everyone comments on their shared hair color i felt called out-- that's exactly what i was thinking! this is a beautiful family filled with love and strength. wishing tens the very best 💞
This is one of the sweetest and most pure hearted family's ever! It was hard when his Dad got choked up, made me so sad 😢. But, they are doing the best for Tens and still seem really happy 🙏🙂
Love the decor of their house 👍🏻😱 Precious little boy 🤗 Love his shirt
I love how death positive they are. They were dealt this unimaginable impending greif and are able to see the beauty in this pain, every moment is so precious and treasured. Such a strong and amazing family with such a beautiful boy. I feel so much for them, my heart breaks for them.
He's an adorable young fellow. That has got to be heart breaking for his parents and brother. You can tell he's happy even though he's limited in his movements and all.
Every time I watch one of these videos I feel so guilty. There are so many people who are so loved, who are so in love life and want more than anything to live but can’t. Meanwhile I don’t even want mine. I wish I could give it to someone who deserves it, to someone who truly is beloved on this earth.
He's lovely xx I always find it so heartbreaking when parents say they just want their kid to be talked to/treated like anyone else :( I wish this was just the default ❤
What a BEAUTIFUL boy!!! What a special gift he is, not just to his family but to all. I love his name, too, Tennyson. Wishing him and his wonderful family all the best!
Wow! What a beautiful story, thank you to Ten’s family for sharing. Towards the end I all of I’d sudden thought his mom’s words applied to my life. My husband just got out of the hospital. He has a lung disease called COPD and congestive heart disease. He went into the hospital with pneumonia and also received a new diagnosis of AFib. Ten’s mom said doctors are not always right and she has witnessed her son living longer than anyone predicted. If we all have that open mind and heart perhaps more people would feel the love! ❤
Mother of Tennyson, you are Blessed. Thank you for sharing Tens life with us. He is extremely intelligent, and when you shared his test scores!?!? Me being me, I 😢 i was so proud 👏🏽 God's quiet reminder to me that He is still in charge. I was feeling low when this story came into my feed, and I am so grateful. Your entire family have a love for Tennyson that is palpable. And his SMILE ! Thank you Chris for sharing this beautiful family with me/the world!! Blessings always 🙏🏾👵🏾
I love you, Tennyson!
You and your mom are so amazing!
My sister in law died when she was 4 of heart and lung disease. Unfortunately I never met her.
It was nice to learn more about this disease and the warrior kids that live with it.
‘He is just pure happiness’ - that is because you are his mummy and you love him , and smile at him , and give him so much to smile about ❤❤❤❤❤
He's a sweet little guy ❤ he has such a loving family
Tennyson put the biggest smile on my face. He melted my heart, he is so sweet and adorable. A beautiful, ephemeral soul with the locks of a golden blazing sun. His mama is an amazing human. Mothers are ethereal goddesses, nurturers... they have a strength only a mother could possess. (What a beautiful room they're sitting in!)
we love you SBSK. Thank you for sharing with us.
😢 damnit smiling and tearing up at the same time
Same here. Appreciate all and everything
Same. I have twin toddlers, boy and girl. They are both coppertops that are always wearing a smile. Tens resembles my little girl, and it keeps messing with my head. The fact that through a failing body, tens is able to communicate at all. Nevertheless Im more ways than one.
Such a beautiful family!!!
When ever Mom is talking and near, Tens smiles are so big. You can feel the love 💕
What a beautiful family and what lovely, caring parents ❤️ There are so many children out there with abusive parents, so this little man is lucky in that respect.
What an absolute fighter, Tens is. Incredible family.
I've never smiled while watching an entire video before on this channel. Just watching Tenn smiling the whole time was awesome.
Such a beautiful family, we can all learn so much from you guys. Thank you for sharing, it takes a lot of courage.
You're so brilliant at this Chris, really amazing.
love how tens puts his hand on everyone who sits next to him
What a beautiful child and family. My prayers go out to them and my prayers.
Tens you are beautiful and other worldly and your smile infectious . You bring a lot of people joy in there lives and I hope you continue to prove the doctor's wrong !
Adorable little boy! I love his little man bun!🥰💯💕😍 I see Tennyson gets his beautiful red hair from dad and grandma. ❤
Tens is adorable and very strong and his family is amazing ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏
What a beautiful child. Beautiful doesn’t even cover it; it’s an understatement. A wonderfully miraculous soul blessing us all.
What a beautiful family, thank you for sharing that incredible little boy with us. Sending love and blessings
My god i cant imagine having to deal with that as a parent i would be a raging alcoholic. Bless your hearts.
Thank you for sharing your life and how important it is to live in the moment.
Tens you are a beautiful,your parents brother and grandma are amazing.sending love and prayers to you all.
What a beautiful family. Just amazing people.. mom, dad, grandma and big brother are all incredible. And Tennyson is the most adorable boy.. and so smart!
WoW, to see the love of the parents…
What a beautiful family. Truly. And thank you for your wonderful interviews. You are so sweet. Man. What beautiful hearts I see in this video.
He's a beautiful boy with the most stunning and touching smile. Very talkative with his face, I wish I could get to know him. I'm glad he has a loving family making the most of his time and giving him a reason to smile so much and spread such joy.
Tennyson is my favorite poet too! So feeling a closer connection with Tens and his family. It is amazing to feel the love the parents of Tens are sharing. I am beginning to understand how these special kids make our world a better place just by persevering. His smiling is such a testament to the essence of our spirit-soul being so much love. No words are even needed. The power of love is so wonderful to see here. All our prayers and all our Love from God to you all, the family of angels.
She looks way too young to be so grown. You're doing a great job mama❤ you really make it look easy when we all know it's definitely not.
Another lovely warrior family 🥰 Love is clearly the Healing force
What a beautiful family
I had a red hair like Tens’ when I was a young girl. My love goes to Tens and his loving family.
He is a beautiful little boy with a beautiful family. May he be blessed with many more years.💗💗💗
oh that big smile is catching lol i love it.
Tens is super cute! I'm guessing that his other conditions prevent him from having lung/heart transplants (if it became available) due to the risk? If not, I hope he can receive the operation(s) and maybe his quality of life would greatly improve. His brother is really caring and mature for his age. Such a beautiful family inside and out. Thank you for sharing your life and encouragement with others.🥰
Brave ALL!
..ALL LOVE!
Almighty surrounds!
What a adorable little boy, love that beautiful smile!!!!
Tens really does love the camera! He's fabulous!!
He is precious. His smile is beautiful. The parents are so full of love for him and they should be very proud of their older boy too!
Love that Mum and Tens have matching up-dos! His hair colour is really pretty.