During the first portion of this video , Denver is hooked up to oxygen near his mobile before I introduce him! 🥰 the cord is less than 5 feet long & he still really enjoys his mobile as you guys may see in newer videos, but it’s also good age appropriate OT exercise back then to reach above him & work on his grasp which he has just exceeded all expectations with now 🥹🤍 Just want to explain why he’s back there playing before I introduce him as I’ve received a few comments about it ❤️🩹
You are so sweet. I have watched your newer videos, Bella, you never complain. Your boys come first in your life, just the way it should be. I wish I could help you and give you a break. I can keep praying. Love to you and your sons ❤💙
You my dear are an inspiration to me. I am a grandmother and i wished my sons would have found a mother like you. I wont go into detail but i am raising two grandchildren from two different sons. Granddaughter is fine but grandson has a few issues, at birth and now. These two so called mothers along with my sons bailed on these children and things have been hard for my husband and I. We love these two kids more than anything in the world and just pray the good lord keeps us around long enough to raise them into adulthood. Love for your child should be unconditional and i can tell for you and your spouse, it is. I know we never planned or wanted to raise another granchild after raising our Granddaughter, ( who is mow 17) but here we are raising our grandson, (who is now 9) and we wouldn't have it any other way. In addition, raising our grandson, since the age of 2 and with issues took a toll on our marriage. However, 7 years later we got him through so much together that we have a marital bond that is impenetrable. We adore these two children, are committed to their every need and have lived our lives for them. Who knew that we were that strong and resilient? And you and your family are the same. You didnt plan for this or want this for your child but you will be strong and loving, you will advocate, you will have more love than you ever thought possible. And your family bond will be stronger than any other because you are bonded like no other. God bless you and your family.
They are so incredibly lucky to have you & your husband! it takes extreme selflessness on your part to do what you are doing. Children are blessings, they need a strong force to guide them in this world. I pray they see the work and love you have put into raising them and bring light into this world because of it. God bless you and your family!
I just found you on here and wanted to tell you that both of your babies are absolutely adorable and beautiful! I subscribed so I could watch Denver’s journey. He is so precious ! And you are a beautiful mom ❤❤❤❤
You have two beautiful boys. Prayers for Denver on his health journey. I know how hard this must be for you. Try not to look so far down the road. Take it one hour or day at a time. You are in my prayers.
Your boys are so precious and you are such a wonderful Mom! It is so unfair that your son and family are going through such hardship. My child had special needs, though completely different than your child’s. Still I feel like I can relate in a small way, because I was worried and lonely often. I became a Mom decades ago. My now adult child is doing well. I just want to say that back then we did not have you tube channels and cell phones. I feel your videos will help many people over the years. I feel you are doing such a wonderful thing by sharing your son’s story. There is something so comforting just hearing other people’s stories, because it helps others to feel less alone. I wish I had that comfort when my child was a little one. I pray that others come across your videos and can gain that support and acknowledgment. God bless you, your family, and your boys!
I’m sure it was such a difficult road to navigate not having this online support that we do now, it’s been helpful beyond words for me to have other moms helping me and guiding me as I learn about his condition. Thank you so much for your prayers, it means more than you know 🤍 I will continue to post as there is next to 0 content with children with disabilities and how much we as a family go through. I hope it helps even one mom. I hope your child & yourself are doing well today 🤍🤍
You can see your body is taking the strain. You show such a great example to everyone, I wish I could reach you and give you a hug. No baby comes with a hand book but you have raised a great older brother who is gentle and sensitive. Maybe baby is a concern but for him to be so vocal and chattering away is so precious. You are doing a great job and everybody has you in their thoughts and is sending you a blanket of kisses and hugs❤
Thank you so much, the first 6 months was so rough, the freshly unknown and quick rush into it all was very hard :( seeing Denver’s sweet personality has been so good for our souls, I love the family we are & nothing is ever for granted, now more than ever 🥹🥹 giving you a million hugs back 🤍 thank you
What a beautiful young Mom you are, and very courageous. Life brings us so many unexpected events but from what we see you and your husband are handling things with love and sensibility and maturity. I wish you and your family every positive outcome. 💜. You certainly have two beautiful boys.
You are my kind of mom, woman, and person! I love how open and honest you are! I am praying for little Denver and for you! I’m going to be praying for a good friend for you!
My best friend's daughter was born with prader willi syndrome and she was worried because doctors gave her a tough prognosis. I told her that only the baby knows her own limits and to not listen to worst case scenarios. That baby is now twelve yrs old and far exceeding what doctors proposed for her. Yes it's scary and difficult, but but no one knows what the baby is capable of.❤
Hello! Both of your boys are so adorable! I think you're doing an amazing job managing parenthood and all of it's challenges. You were truly blessed with a special little angel !
Thank you so much 🤍 it ebbs and flows on good days and bad, but seeing him happy and smiling makes it all worth it. He truly is so happy all the time 🤍
I have had 49 years of health issues and it’s not easy. I’ve had surgery after surgery and so on. My mom was amazing through it all and never left my side until she was diagnosed with Parkinson’s Disease. She passed 5 years ago after a 22 year battle with said disease. Your sons are lucky to have such a wonderful, loving mother! I’m going to be praying for y’all! God bless you!
I’m sorry for the loss of your mom ❤️ I will forever be by his side , we got a loose surgery timeline today for his heart and as scared as I am for him, I know he is so strong & we will all be there for him 🤍 thank you for your kind comment & prayers ❤️
Hi. As a mom with two kiddos with disabilies my heart goes out to you. My older daughter had trisomy 18 and required 24 hour care. She had congestive heart failure, pulmonary hypertension, seizures, gastrointestinal issues, etc. She had a trach and g-tube. From the day she was born we knew each day was a gift. We learned all sorts of different skills to be able to care for our daughter. Please know that with each skill you learn, you will also gain strength; as you pass through the grief of losing the child you thought you would have, you will find joy in child in front of you. Yes, the challenges of our differently abled children can be incredibly difficult, it can also bring great gladness. You will become an advocate for anything and everything your beautiful young man needs. As you move forward on this new and what feels like a very isolating and lonely lonely journey; you have become an educator to those around you. (You're already advocating and educating by having a your channel). You will, never again, take life for granted. Our daughter passed away a year ago. We were blessed to have her for 36 years, 5 months, and 22 days longer than than many. The challenges we watch our children go through, teach us not to sweat the small stuff. Each gain - however small - is a celebration! Our younger daughter is on the autism spectrum. We got the jackpot! The point is there are many of us out here, just reach out your hand. If you need anything...
Thank you for this 🤍 trisomy 18 is actually what I originally thought Denver had while I was alone googling before I found neonatal Marfan syndrome and he fit every marker.. there are a lot of similarities between our children’s conditions, I know that must have been hard on her & the family. A gtube will be our future and most kids I’ve seen with oxygen on his condition do eventually get Trach so that is a path we might cross also. Incredible to have that time on earth with her ! 🤍 I am still mourning what I thought I have, definitely.. it was a shock and every drs appointment tears me down little by little to hear how he is doing inside. It’s so cruel to see a baby go through so much so little. Your post was incredibly thoughtful and made my day🤍
@@isabellajoyy So glad you replied. I will be thinking of you often. We have great days and those that are not. Bless you as you go down your path. Denver is the cutest little guy! If you need or would like to talk just let me know. Ours is a walk that is so different than our peers, but it becomes one that is the craziest and most powerful of our lives and those around us.
@@sherylstradinger2052 thank you so much, RUclips does not have a way to reach out to people & share experiences other than the comment sections, maybe I’ll make an email for this reason as right now all I have is my instagram 🤍 connecting with others truly is so helpful , as I’m sure you know it can feel very isolating 🤍
@@isabellajoyy Good morning! Hoping this might be a good day for you! However you would like to share is ok. This is so cheezy but the lyrics from the Dianna Ross song "Reach out and touch somebody's hand, make this world a better place if you can" has been playing in my brain today. Fits right! Joy in all things great and small. (Ok, so I just dated myself!) Do you have a developmental disabilities case manager to help you navigate services that may be available to you?
@@sherylstradinger2052 I will download that song and listen on my way to the grocery store today !!! 🤍 & we have a lot of people assigned to him physically for almost all body parts ( spine, heart, lungs, eyes, pectus, ortho , pt, ot etc ) but as for someone to help navigate for financial help for his disability we are on a 18 month wait list to even talk to someone.. because his case is very severe & time with him is unknown they are trying to see if they can fast track that for us as it’s all out of pocket until you are approved & they don’t back date it. This person will help coordinate all the social work for him & to be honest I’m not sure what that all entails !
You’re a fantastic mom! Your videos are an inspiration! Thanks for giving us a window into your life. My prayers continue for your whole family. 🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️👍👍👍👍👍
Your little Denver loves you so much, you are his everything and he is so lucky to have you. He is so precious. It is completely understandable how you are feeling--isolated, angry, sad ....you are doing a wonderful job and you are an amazing mother. Hugs
You and your husband have more strength than you realize. The littlest children are the most powerful and are the blessings of your life. You are both so strong and good. Thank you for sharing and know all folks are caring about you all.
Thank you very much 🤍 it means so much to feel seen and heard. Denver deserves the whole world and to have such amazing support behind him and our whole family 🤍🤍
I just found your channel & wanted to get to know your sweet & kind family! It's wonderful to peek inside your lives & I appreciate your sharing all you go through. Your boys are just precious✨and you're going to be in my thoughts & prayers🥰
Oh he is so beautiful. I wish I lived close so I could help you. You are his mother for a reason. Only you know how to raise him and what he needs when he needs it. I know it’s hard but one day he will stand and call you blessed!❤️
That would be such a great goal!! Seems we are making steps soon to get him to possibly walk and that would be great! Thank you so much , you connecting and being kind to Denver and his story is helping 🥰
There’s A LOT of support out there for parents of medically fragile children. I don’t know where you live but, depending on that, utilize the resources. Child Life/Early Intervention comes to you and can teach him trunk control (how to sit on his own) I was a medically fragile child (now almost 53) and had all therapies available early on
I live in a small town in Canada that doesn’t have much support , but the city closest to us has many resources for us :) we just got him a specialty chair from his pt and he’s loving it !! We have to drive to get the help but it’s worth it for him.. to get funding it takes about 18 months to 2 years and I just applied last week so I’m hoping this opens more doors for us as well :) thank you millions for watching. Early intervention is truly key to making him have the best life possible.
Sending love and strength to you and your husband. Keep talking to that camera. It’s a therapy of sorts even if it doesn’t seem like it. The words get said, and heard. All your feelings are valid. I pray you find someone to connect with, so that you can lean on them. Motherhood in general made me feel so isolated. But just one person you connect with, can keep you putting one foot in front of the other. ❤
These words were so kind and validating. To have this space on the internet that is just mine & few people in my real world know about is freeing.. it’s been very therapeutic as you said. I appreciate you taking the time to reach out to me, it really does make my day 💖
Mom here who’s son, now 25 years old, was diagnosed with his physical disability at 8 months old. Perfectly healthy until then, so also a huge shock to us. It’s a whirlwind, feels isolating and definitely one of the hardest things you’ll go through…but, I promise, your sweet little Denver will teach you (and all those that meet him) so many amazing and beautiful things and eventually, you will dream new dreams! There is actually a book titled that “You will Dream New Dreams” that I highly recommend! Sorry I don’t know the author but a quick google search will get you to it! Hang in there! You are doing a great job!
Thank you for the recommendation! I’ll check audible as I accidentally forgot to cancel my membership and have credits piling up 😅 thank you for the comment, having a child physically disabled takes a big role on the parents and it being unexpected I’m sure was hard on you all.. I hope your son is doing well now 🤍
You tow are the best parents. Denver is a beautiful baby. I pray for him and his doctors and nurses . After all his surgeries maybe he and you will feel better. He will adjust to his issues. He is a smart young man. I pray for all of you. God bless you. ❤😊🙏🙏🙏
Oh my goodness, it's a lot to do but you're doing such a fabulous job of caring for everyone, including yourself! The whole world seems to be struggling right now, and even realizing how close we are to the end like the Bible talks about, it still doesn't make it easier day to day! I'll be praying for you, your husband, Draven and Denver and just know there are better days ahead! We serve a God who delights in making everything new and he loves us so very much! xoxo
Thank you very much! Times are tough but we are pulling through and Denver has been so smiley and happy lately I think he is feeling a bit better 🥹🤍 that you for your prayers for our family 🤍🤍🤍
You may feel dark and alone, but believe it, you're not. I also, have a special needs child to care for and love. It's hard enough raising a "normal" child today. And like you, I'm the only one I know going thru this situation. And I wonder why and what did I do wrong that I was picked outta a bunch of other parents. It's not fair. I to struggle everyday. It hurts me bc you want you're child to have a easy life and not a hard trouble life. So I thank you Isabelle for opening up and recording you're family's journey. You're a good doting patience parent and watching your videos make and support me realize I'm not so alone, I can do it and that life's not so perfect. No one's life is perfect on paper and pictures, if they say that, they're lying. You're family of 3 boys is so cute too!! Stay strong and don't back down!
hi sally!! want to say yes you are soooo right. no ones life is perfect and the older I get the more I realize how true that really is. Im sorry we have this in common, but im here if you ever need a chat. my instagram is @bellajoyross . 🤎
I know I can never understand what you're going through but I do pray that God gives you comfort and some sort of peace, I pray that He gives you strength to carry on and be there for the little one and his brother and not be strong for them but for you as well and lastly I hope you know that God will never give you more than you can bear and He never makes mistakes. Sending love and peace ❤❤❤
Thank you so much for this, I some times feel like I can’t handle this all.. but prayer helps tremendously, i thank you for keeping us in your prayers 🤍🤍
Hi, I really wanted to just let you know that you are not alone! I also feel like it’s hard to find someone to relate to but I do relate to you. I have a 4yr old girl with a rare genetic disorder. She has low tone, developmental delay, epilepsy, asthma, and due to aspiration she takes all her food via G-tube. She is pretty small for her age and only weighs 25 lbs. I also have a 7 month old baby boy as well. I have had many difficult days and nights and it’s hard to watch your baby get worse over time. What I can say is that despite the challenges there are better days. Although she doesn’t talk, walk, sit, or even hold her head up, she does have a beautiful personality and her own way of communicating that just takes some learning. God has given my husband and I the strength to move forward and I pray that he may give you strength as well. I pray everyday for healing over my baby girl and I will include Denver in my prayers as well! You have a beautiful family❤
You're doing a great job, Mama! Hang in there and remember that you can always ask for help when you need it. It takes a village, and you're not ment to do it on your own. There are others out there going through the same thing.
It’s a village for sure ! There is a small Facebook group of parents and we all greatly lean on each other for advice and help since this condition is very rare. We are actually currently admitted and have been this whole week and the group has been an amazing support ❤️ thanks so much for your kind words ❤️
Thank you for sharing your journey. I can definitely relate to you! My 2nd born son was born with osteogenesis imperfecta type 3 (brittle bones disease) and it’s been hard, I definitely have all the feelings your feeling for sure. I appreciate you sharing your sons story. ❤
It’s such a mind game. I don’t think anything can prepare us emotionally or physically. I hope you both are well & you can always reach out on my instagram if you ever want to chat ( @bellajoyross ) 🤍🤍🤍
I relate with you. My niece was born with cystic fibrosis. My mom and I were the only ones that kept her when my sister needed someone. I’m always here if you need someone.
My sister is actually here now helping & visiting 🤍 my mom and sister are my biggest support and I truly feel so supported by them 💕 I’m happy you were able to be that for your sister, I know it means so much to her 🤍
Hey, I just randomly came across your channel. And another mum with a toddler and special medical baby boy. Not Marfans but she seems super lovely. Mary Henderson. I have two kids, 12 yr old autism, adhd, dyspraxia and so on. Beautiful soul. Lovely kid. And my girl who is 3, she has two rare brain malformations. She’s blind in one eye. Is small and doesn’t eat. She can drink special formula thankfully… she walks and talks. If you ever wanted to connect. :) I know how you feel. Mr 12 was prem and I felt very much like you do. With miss is the same. There’s not many with her condition in my country so it’s hard. Much love to you sweets. One day at a time. One hour at a time some days. Xxx
oh dear, I am so sorry. To see our children go through obstacles that make their life harder is a pain beyond comprehension. Then add on that the condition is rare and it's beyond isolating. I would love to connect if you would be interested :) my Instagram is @bellajoyross - Denver also has eating & vision issues so I understand how you must be feeling :(
@@isabellajoyy don’t be sorry! They are living there best lives. They know no difference. They may have struggles an such, we all do. There’s is just different. And that’s ok. I wish for people to accept more and be less judgy etc yet people may look at me and think I need to not eat as much food, lol I have Pcos and endometriosis which makes it harder ( since having babies ) to lose the weight. I eat very little. So I care. Not really. I’m now beyond that… spent so much of my life trying to please others … it was exhausting. I am now who I am and my babies are who they are. Don’t get me wrong… it is tough some days. But we find our groove and our style. What works for us. May not work for someone else. I am enough! Is something I’m still trying to get my head to listen too lol I am an amazing mum yet I’ve been criticised so much … I have to teach myself that it’s ok not to be ok some days but getting back up and saying I am enough. I am doing my best. And my babies are too. I’ll add you on Insta … off to bed it’s 12.51am here in New Zealand hehe
Hello there! My son had a massive stroke at the age of 4 months old. Born healthy, but had an undiagnosed congenital heart condition called Co-Arctation of the Aorta which caused the stroke. I was told he would not live through it, and if he did he would be a vegetable. Austin is now 35 years old. He is disabled mentally and physically, but he is here and I love him with all my heart! He sure has done much more than the docs ever predicted! I just want you to know that it is SO normal to feel how you feel. I went through all the stages of grief...Denial, Anger, Bargaining, Depression and finally Acceptance. I was so angry...how can other moms have SIX or more kids all "normal"?, why me?, why him? Back in 1988, there was no social media or cell phones. I felt so alone. I look back on that period in my life and think I would have been so much more understood and supported had I had those outlets. In no way should you feel less alone or understood because you have them though. I don't know if you've ever read this, but the first time I did, I felt complete and utter joy that SOMEONE understood! Please feel feel to message me anytime if you need support
Oh Gretchen, I really could not imagine going through this without having a source of information online, it is the only thing that brings me joy when I see kids 4,5,6 years old happy and living life with what otherwise google says is rare.. our kiddos almost have the opposing issue where Denver’s aorta has a very large dilation, ( 11 z score ) , I’m glad to hear he defined all odds and you get to love every day with him 🤍🤍. I cried reading that post from you.. I am in “holland” and I’m trying to grab all the books I can, it’s not what I dreamed of, it’s definitely no Italy , but I’m here, the weather is good some days , horrible others, but I have a good crew of people here with me and they keep me grounded. I do get jealous hearing about others pregnancies & babies, I’m not out of the clear with letting go of those emotions and I don’t know if I will ever.. seeing your baby suffer, be stuck to cords, prepare for surgery and be on medicine that alters who they are is horrible. I’m sure you can relate so much.. ❤️🩹❤️🩹
@@isabellajoyy Yes, I can so relate! I was 27 when I had Austin, I am 61 now. The jealousy I had of other mothers and the pain of my "loss" lasted many, many years. I can't say a specific year when I was "better", but I do know without a doubt that it is my faith in God that got me through, and still does. I still at times think about what life would have been like had this never happened, but those feelings are few and far between. My prayers for you are that you always feel supported, find peace in your situation, and that your beautiful boys both thrive and continue to bring you joy for as long as you live.
@@gretchenwanek8797 I’m 27 with Denver 🥹 prayer has been helpful, & to know others pray for him is heartwarming beyond measure. Do you just have Austin or do you have other kiddos ? 🤍🤍
Hi Sweetie. I've worked 26 years with special Education students and I feel for you. My heart is with you. I see you have so many comments, don't worry if you can't respond ....I get it.... Will pray for you. I'll keep it short...but, I'm here. Day by day, you'll make it.
Your son is so precious!! And you are an awesome mom!! Being a mom is a tough job even with “regular” kids! You never know what you’re going to get either. I had 2 regulars lol 😝 then the last one with Down Syndrome, autism and Tourette’s. He changed my life for the better. I’m not saying it’s easy because it’s not with no respite or dayhabs where we are. All that went out the window when COVID hit but everything happens for a reason. 🤷🏻♀️🤷🏻♀️🤷🏻♀️ Schools and communities are much more danger than they used to be so maybe keeping your babies home is a good thing.
You are right about that!! & we also have No respite services here either but my sister helped me a few days ago while I took my son to a birthday party and it was the first time I’ve had anyone help with him, makes me wish I lived closer to family :( but I am lucky they come down when they can 🤍 motherhood is just a hard season all together I’ve learned 🤍
Isabealla, I am a mom too of a child with cerebral palsy. I somehow came across your channel. My daughter and I had a traumatic childbirth . she nearly died twice. Diagnosed with cerebral palsy. Please know you are brave and smart. PMme this road is a long one. I would be happy to help.sending you love.
Hi Lesley, I'm sorry about your traumatic childbirth... it's so hard to explain to others unless it's a path they have also walked on. So please know I am here, I know how you must have felt :( You can reach out through Instagram if you ever want to talk ( @bellajoyross )
You are an amazing mom! I work with children who are medically fragile and even though they are not my biological children I see the struggles the children face. Especially the families and parents it can be very overwhelming on them. I pray that you find a sense of community because that is so helpful. Has Denver received any early intervention to help him work on those developments milestones. Many of our children see their therapist at our care center.
Hi! Yes we were on the back burner up until last week with pt/ot as well as a feeding / speaking therapist, but it seems this month we are getting looked at closer , which I am so happy! Pt/ot comes on may 2nd to our house to help us work with Denver as he has stopped progressing around 2-3 months , minus a few little things. 🤍 thank you for being so sweet 🤍🤍
@IsabellaJoy I hate that the services our children need are so difficult to get at a timely matter. Especially since early intervention is so important but you keep advocating for him and it will all come together. They will model some of the things that you can carry on once they leave and that's going to be so helpful. Hopefully they will help you start a family service plan and that will start you guys off on the goals to work on. As educator alot of parents are told there children will never do so many things because of their diagnosis but I have found that with consistency and dedication from families and the support system the children beat the odds.
I have two sons that were on disability their entire childhoods and then now that they're older we found out they were bipolar and schizophrenic. It's okay to say I'm jealous of other mothers. You have dreams for your child hopes and aspirations. Through no fault of your own you find out that your child will never have a normal life or ever be able to live on their own more than likely it's heartbreaking and it's okay to feel that way my sons are 30 & 40. They can't help with the garden the lawn their own laundry they're not like my other friends adults children that are married working owne & home and have children. They will always need to live with someone to help them. You think when you get older around 60 you get to retire and live a life of relaxation and you find out that that will never really truly happen. Your adult children will never be able to help you it will always be as if their children you will always need to help them. You have feelings that are human because her mother's that doesn't mean we're Superwoman. We're just like everyone else trying to figure out how to get buy from day-to-day the best way we can make the best of what we have. I've had to seek treatment for depression and anxiety, and that's okay.. people always say well if I were them this is what I would do with their children or adult children. Well NO THEY DONT KNOW! And I was a single mother my son's bio dad left when he was 2 & ner once called, It happens. I figure karma will catch up with him if not in this life the next! It's hard it's heartbreaking it's impossible sometimes it's heartbreaking but on the flip side you love your kids like only a mother can and that will bring you joy along with all the work. Our love is for eternity
Oh mama I feel this 🤍 toxic positivity is hard to fight back. People tell you how you should feel, act, and do even in situations you never thought you would be in yourself. I am, like you, also feeling let down on certain parts of what I thought I would have with Denver. I love him but this is not something I would pick for him to go through surgeries and pain and things to be hard for him. I think both can be felt at the same time 🤍
It’s hard but try to take one day at a time. My grandson was very ill and they said if we could keep him alive until he was 3 it would be a miracle. He just turned 20 !!!
Thank you for telling me this story! I pray to god that medicine comes a far way & helps Denver ! These last 10 years for medicine has done miracles for neonatal Marfan syndrome & I know it will continue to be on the up & up. Thank you so incredibly much for this lovely story of your grandson 🤍🤍
If we, parents, especially parents of specially needs children, could live vicariously through our kids, would we? I ask, because Denver is in the background playing with his mobile (?) and the older fella on your lap just pleased as punch. Neither child notices that there is anything but love in that room with them. You know they have that knowledge- This is my brother, and I have to protect him- to the- This is my brother, and when he gets better, I'm going to show him every cool thing I know. This is what I mean, what I wish. I wish that you get to take your boys on all sorts of adventures from here in the US, because it's good to start next door, to various places in the world.
Hello! We are in Canada , specifically Alberta🤍 Denver is hooked up to oxygen near his mobile & it’s a great OT exercise for his age back then to reach above him & work on his grasp which he has just exceeded all expectations with! 🤍 back then he was and still can be sensitive to movement after eating. It’s actually picked back up these last few weeks and I’m scared it could be a sign of heart failure & something we were told lookout for :( I have a video coming out tomorrow of a day family trip with the kids before we got his heart surgery date . Draven is the best big brother & always interacts with him, their relationship is amazing to watch
Hi just discovered youd video by accident. Your a great mom and ylu have 2 beautiful boys im sorry about your son condition 😞 i cant imagine what you go thru everyday and thinking about the futur. Just wanted to say your son on your lap putting all the toys in his mouth is scary only because i remember on instagram a few years ago before cov when a little boy in Australia put a toy bouncy ball in his mouse and the little boy was 3y old he chocked on the ball and died infront of the parents and other siblings. Im sorry to write this just becarful cuz he puts a lot in his mouth my kids werent big at putting stuff in there mouth. I subscribed your a great mom your doing your best goodnight from 🇨🇦
Thank you so much 🤍 yes draven is always chewing on something when he is teething ! I didn’t even realize it until I edited back some of these were from a gift he got from his birthday and they came with such small pieces I just had to give it away after watching this 😭 I have such a fear of anything happening to my kids, this didn’t help. Also I’m a fellow Canadian from Alberta, hope you are well 🤍 🇨🇦
@@isabellajoyy I thought you were in Canada I’m in Ontario I have family in Calgary. The little boy I spoke of is Alby :( in 2018 age 3y I now always tell everyone to be carful little toys i too never thought much about this when I was younger with my kids but one thing I hated was tiny bouncy balls and my dad gave us many times even now he buys them and I have to say no and my kids are older. Reading about Alby has haunted me but worse is what that family went thru and will be going thru forever. That’s great you gave it away or threw out. We are good always lots to clean at home that’s the story of my life and I make retro videos so my channel very different from yours. I hope your son gets well and his heart gets stronger and he learns to walk and talk. All the best will be following your journey on this side of Canada.
I’m so so so sorry. Please please please don’t beat yourself up over having those feelings of anger when you see happy moms w their kids… I wish I had better advice but I am still recovering the loss of my child, who I never was able to hold. Paetyn Jois was diagnosed w Trisomy 18, Edwards Syndrome during my first trimester blood work/ultrasound. I cried the whole way home, even though the tech was smiling ear to ear, I just had the worst feeling in the pit of my stomach. The father, my fiancé at the time, called me crazy when the tears started to flow. Sadly for us, he was eating his words the next day. I had the worst decision to make and I was all alone. My own mother practically called me a murderer…in front of my 11 year old daughter, while tryin to rub my belly and apologize to my child. There is so much more but even though it’s been…a minute (she was given back to God, June of 2007) it is not easy to eloquently put into words. I wish I could wave a magic wand and heal your precious boy-you are doing an amazing job so please do not ever discount all you do each day for those bundles of joy. I cannot fathom the fear and uncertainty but you are handling it with grace. Just have to take it minute by minute and keep loving w all that you have. You are so much stronger than you give yourself credit. God speed. 🤗 🕊️ sending loving healing positive vibes
My heart reading this… I can’t not imagine what went through your mind. & then to not have support from your mom would have been devastating. I am familiar with trisomy 18 as for a few days I thought that might have been what Denver had before we found out more . and I know that it is a devastating prognosis & so unfair 😭 mama, I’m here. You are so incredibly strong
I saw you today for the first time and I didn't like the fact that you left your little child in a corner on the floor and I'm sorry to see that you are continualy hiding your son's hands that not a nice thing to do and to see I can understand it can be very difficult to accept the thing your son is not healthy you might have to take some time to accept it I don't know when he was born but you look at him with some sort of shame...you have to love him you are his mother and he needs love and attention more than anyonelse because he can feel it if you don't love him don't be ashamed of him all of us is special even with disability... I wish you all the best dear Denver🥺😘😇❤🤞
Definitely not ashamed of him.. my two boys are my world. Both of them were right next to me it doesn’t get much closer. This video is to show him off. He is very low tone and holding him is hard. I make videos to show him off, if I was ashamed I wouldn’t be doing RUclips about his journey. This was my first video introducing him, there are others of him hands feet and all.
This channel has changed and is dedicated to Denver, she truly cares about him. This is probably the dumbest comment I’ve seen, you clearly have no clue what you’re talking about. This is negative enough for her and her family. Especially Denver. So if you can’t be positive, then stay off this channel. You clearly have zero understanding what this is like for a family.
@mashaorso3925 You are a special kind of piece of poop! The lowest type of troll human there is & you should be ashamed of yourself for trying to upset this beautiful mother going through a really tough time with her beautiful baby that she loves very much. Stop being a shitty miserable person & trying to ruin the day of someone going through enough stress & heartache. SERIOUSLY!!!
@@shelliea4621I’m sorry it missed this it went to a filtered section of my comments ! Just wanted to say thank you for sticking up to me 🤍 this comment bugged me so much when I got it because I don’t feel ashamed of him at all :( thank you again millions for sticking up for me 🥺🤍
It’s definitely been hard , don’t know how else to describe how I feel, so many complex emotions 😔 I’ve been seeing a therapist and I really look forward to our meetings, some days are worse then others and it’s been getting more difficult as surgery time gets closer! Im hoping when he recovers and it gets easier 🤍🤍
So many struggles overlap no matter the diagnosis. It’s so hard on them and the whole family 🤍🤍 it’s a part so hard to explain to anyone unless you walk it in some capacity. Thinking of you, him & the whole family 🤍
Was so nervous people would be evil & mean towards Denver. Which I have had my fair share of mean comments, but Denver is such a sweet and loving soul & really is the happiest baby ever 🤍 I know I’m strong enough now to deal with the jerks on the internet & I’ve come a long way 🥹 I agree it will all work out , he’s already defied so much & is so strong! 🤍🤍
@IsabellaJoy Denver has by far the cutest cheeks ever!!! He's PERFECT just as he is... and so are you and ur family. I personally think that children choose their parents... Denver chose well!!! ❤️
@@martinemikita9281 when I was younger my mom would tell me a story about how I picked her to be my mom, so when Denver was born I thought back to that story & believed he picked us... ahh crying haha so emotional this week but thank you so much for your kindness 🥰
Hi Debbie ! yes its been a whirlwind, i wish Denver's life was easier on him, he goes through so much ( as i write this he just got out of surgery yesterday ) the highs are HIGH and lows are LOW, very conflicting emotions. I have reached out to Sebastians mom after another comment mentioned her 💖💖
Yes, I can't emagine the emotional roller coaster it must be! Life is not an easy journey is it? I watch Freya Lucky Arm too, she has the same diagnosis as Sébastien...but every child is different. Freya does better, but does not have as many physical problems heart, brain, eye problems either. Every child is different. One thing they say not to do is GOOGLE the Disease....Everyone does, and it's just something that creates more anxiety because most diagnosis are so complex, but not a true science for what life will be for your own child. You're a wonderful mom, both your boys are sweet . Thoughts are with you
Maybe you could try "support chairs for disabled children." There are so many options these days like inclined chairs. That will allow him sit up and look around by himself.
We have the special tomato chair which is a chair common for kiddos with low tone, our OT isn’t in love with how it’s working for him so she’s been on the hunt to see how we can adjust it or other ways it could help. He definitely wants to sit up and do more, but his head is so heavy our drs don’t think he will roll to hold it up for awhile :( I truly think he would love to sit and be looking around more like you said … i hope our new ot/ pt can help us out with exercises to help in edition to other equipment as well 🤍🤍🤍
Do you or your husband carry the gene for marfan? I hope it help you to know that I will be praying for Denver, you and your family. May the Lord give you comfort, strength and peace. ❤️🤗🙏
The neonatal variation of Marfan syndrome is the most severe of the condition.. unfortunately, they go through a lot more at an earlier age & it is a life-limiting condition :( medicine has come a lot way for this condition in recent years and we are hoping this give us more time with our sweet boy. Thank you very much for your comment and for being so kind!
Are you getting any counseling? I've never seen your channel before but I couldn't watch and run. I know everybody's trying to be supportive but I know you are going through it. And you're worn out. And you have a long hard ride ahead of you. Please, please, please do not try to do this without a good therapist for support. You are standing in the gap for your family and if you break it will all collapse around you. You're the only one that's gonna be able to carry this for your family and your husband is gonna have carry all of you as one big giant package balanced on his shoulders. He needs counseling too. Please consider it...
Yes I’m very pro counselling & we originally connected with a couples counsellor to help us through this. She was great , but I could tell she was struggling to help us with this difficult time we were going through. Our drs have connected us to the hospice counsellor through our hospital and since seeing her it’s been so helpful. I truly look forward to talking to her 🤍 you are totally correct with mentioning the wear and tear of our whole family. It is very physically& emotionally draining to go through this with Denver, & I hope we can be the best parents to him 🤍
I only just found you today! Hope you do not think I am being rude! You need some Colour on your walls if you are allowed to decorate! Even blocks of colour!
Yeah my husband definitely wasn’t on board with all white. but when we bought this house it was sooooo dirty, like beyond dirty and I was 32 weeks pregnant, all I wanted was a blank clean white canvas. The nesting bird in me was freaking out haha. Our upstairs has a picture and something on every wall, but downstairs this back wall you see is so awkward I haven’t found something I love yet. Since it’s the kids play area I was thinking some picture I could change out but haven’t found exactly what I imagined. Behind the camera is a beautiful reading nook I haven’t shown as I usually film in front of it :) I’ll be sure to show of more of our house, still getting used to videoing myself haha thanks for the view & comment it means so much to me :)
@@isabellajoyythank you for replying! I had my daughter at almost 44 ! My Husband died when my Daughter only 2! My daughter was ok til year ago . Now unwell Eat Disorder Unit with Anorexia! Our Situation very different but we share similar worries and heart aches! I would like to send you a card!
@@irenedavo3768 I’m so sorry that must have been so hard to raise your daughter without that support. My dad also died when I was young and my mom had to do it, so I always look up so highly to parents having to do so much amongst all the hardship they have went through themself so I applaud you! I’m sorry your daughter is going through that, I know there must be so much you are going through with that so I hope all goes well with her ❤️❤️❤️
It was the worst day of my life, I was told that they would do an investigation to figure out why that happened, since it was so physically apparent there were big issues both inside and outside of his body. We had a student tech so that could have been the reason, but either way when he was born I went from cloud 9 to almost a mental break.. even after he was born I didn’t see him for 2 hours and no one told me anything, I thought I was being wheeled in to see my “normal” healthy baby . But he was struggling to breath while they waited for an ambulance from children’s hospital to get him. I only saw him for 5 minutes before I had to wait 2 days at our small town hospital recovering. Oh it was beyond a nightmare for me. I really block it out until I open my memory and think about it..
I love you always Denver and you have a great mommy and a older brother who looks after you and very cute and very beautiful and very nice and very beautiful baby I wanna pick him up and spoil him all day and all night long do you have a rocking chair so you don't have to be on the rug or the floors do you have any furniture at all because you can get help from united way they give you free furniture clothing and toys for free of charge
I actually just got another rocking chair for downstairs on Sunday! thank you so much, Denver's oxygen only reaches certain areas of the house and thankfully he can reach to this play area we have where I was filming this 🤍
Denver is sooo cute, just super skinny. Maybe switch him on another formular especially for children with bit of underweight? Greetings from Tübingen, Manuela
Sooo skinny :( Marfan syndrome is characteristically tall & skinny, but he just has 0 appetite. We are on a 30 cal / ounce formula with little to no progression. They seem very hesitant to want us to increase amount ,which is odd since his heart issue doesn’t have us on any fluid restriction as per our cardiologist. I really just want him out of the 13 lbs and get bigger for surgery , just seems like a battle we can’t beat
Don't feel obligated to expose all your son's medical details and personal private issues to the world. There are crazy people on RUclips and everywhere on the Internet, you owe RUclips nothing and can keep his private life private
Thank you 🤍 I do keep a fair amount private and choose to share little tidbits of our life and hardcomings to relate to those who are going through those times. It’s isolating especially where I am from a small town.. You are right about some crazy people on social media & some very rude people as well :( I try to come from a place of love and information. Denver is such a sweet boy and things are just harder for him in general. But we are working so hard with him and it’s definitely not as easy. It’s a balance of wanting people to understand families and children with special needs and making sure that others feel seen & heard and also respecting that it’s not easy for Denver or for us🤍 I’m already loving looking back on some of these videos ( seriously I watch the eye glasses video probably 2 times a day I think it was such a sweet moment ) but there are things I watch that I know I would never in good conscience be able to talk about or show
where we live in Canada, winters are very cold & he has poor blood circulation so it's mostly to help keep him warm. now in summer, he is usually in a short sleeve and maybe just a diaper to keep cool 🤍
@@isabellajoyy Ignore silly comments like this. You don't have to explain why you keep your son warm/cool & comfy! His comfort is the first priority. Especially when you are at home. I've seen a few comments rub me the wrong way. Just know that with this comes some people who will criticize the silliest things. Please ignore them. You have ENOUGH to worry about. Prayer & hugs to you.
@@shelliea4621 thank you for your kindness 🥹🥹 this video on particular got some comments that upset me about Denver being far away , unloved etc.. I try hard to not let it get to me 🥺 not this comment in particular, but I’ve had some evil comments , trying to call Denver names, tell me he shouldn’t be alive & some truly horrible stuff :(
Have you heard of / watched videos by The Fuller Fam - @thefullerfam2303 They have triplets with various medical complexities including needing oxygen & g-tubes. They might help you feel not so alone.
You have two beautiful boys. Prayers for Denver on his health journey. I know how hard this must be for you. Try not to look so far down the road. Take it one hour or day at a time. You are in my prayers.
Thank You! Denver has taught me so much about taking the road one step at a time, he is so incredibly strong. Your prayers and kind comment mean the world to us, thank you again very much.
During the first portion of this video , Denver is hooked up to oxygen near his mobile before I introduce him! 🥰 the cord is less than 5 feet long & he still really enjoys his mobile as you guys may see in newer videos, but it’s also good age appropriate OT exercise back then to reach above him & work on his grasp which he has just exceeded all expectations with now 🥹🤍 Just want to explain why he’s back there playing before I introduce him as I’ve received a few comments about it ❤️🩹
You are so sweet. I have watched your newer videos, Bella, you never complain. Your boys come first in your life, just the way it should be. I wish I could help you and give you a break. I can keep praying. Love to you and your sons ❤💙
You my dear are an inspiration to me. I am a grandmother and i wished my sons would have found a mother like you. I wont go into detail but i am raising two grandchildren from two different sons. Granddaughter is fine but grandson has a few issues, at birth and now. These two so called mothers along with my sons bailed on these children and things have been hard for my husband and I. We love these two kids more than anything in the world and just pray the good lord keeps us around long enough to raise them into adulthood. Love for your child should be unconditional and i can tell for you and your spouse, it is. I know we never planned or wanted to raise another granchild after raising our Granddaughter, ( who is mow 17) but here we are raising our grandson, (who is now 9) and we wouldn't have it any other way. In addition, raising our grandson, since the age of 2 and with issues took a toll on our marriage. However, 7 years later we got him through so much together that we have a marital bond that is impenetrable. We adore these two children, are committed to their every need and have lived our lives for them. Who knew that we were that strong and resilient? And you and your family are the same. You didnt plan for this or want this for your child but you will be strong and loving, you will advocate, you will have more love than you ever thought possible. And your family bond will be stronger than any other because you are bonded like no other. God bless you and your family.
They are so incredibly lucky to have you & your husband! it takes extreme selflessness on your part to do what you are doing. Children are blessings, they need a strong force to guide them in this world. I pray they see the work and love you have put into raising them and bring light into this world because of it. God bless you and your family!
@@isabellajoyy Honey your little boy is Absolutely beautiful! You are an inspiration and I love you're family story!!! ❤❤❤❤❤
@@jessicaysusi thank you Jessica 🤍🤍🤍
@@isabellajoyy Your Welcome. 🙂
🙏🏻❤️
I just found you on here and wanted to tell you that both of your babies are absolutely adorable and beautiful! I subscribed so I could watch Denver’s journey. He is so precious ! And you are a beautiful mom ❤❤❤❤
Thank you so much 🤍🥹
You have two beautiful boys. Prayers for Denver on his health journey. I know how hard this must be for you. Try not to look so far down the road. Take it one hour or day at a time. You are in my prayers.
Thank you very much for your prayers 🤍🤍🤍
Your boys are so precious and you are such a wonderful Mom! It is so unfair that your son and family are going through such hardship. My child had special needs, though completely different than your child’s. Still I feel like I can relate in a small way, because I was worried and lonely often. I became a Mom decades ago. My now adult child is doing well. I just want to say that back then we did not have you tube channels and cell phones. I feel your videos will help many people over the years. I feel you are doing such a wonderful thing by sharing your son’s story. There is something so comforting just hearing other people’s stories, because it helps others to feel less alone. I wish I had that comfort when my child was a little one. I pray that others come across your videos and can gain that support and acknowledgment. God bless you, your family, and your boys!
I’m sure it was such a difficult road to navigate not having this online support that we do now, it’s been helpful beyond words for me to have other moms helping me and guiding me as I learn about his condition. Thank you so much for your prayers, it means more than you know 🤍 I will continue to post as there is next to 0 content with children with disabilities and how much we as a family go through. I hope it helps even one mom. I hope your child & yourself are doing well today 🤍🤍
Denver is beautiful! You are an amazing Mother! There are people that will support you no matter what!
Thank you! That is very kind of you to say 🤍🤍🤍
You can see your body is taking the strain. You show such a great example to everyone, I wish I could reach you and give you a hug.
No baby comes with a hand book but you have raised a great older brother who is gentle and sensitive.
Maybe baby is a concern but for him to be so vocal and chattering away is so precious.
You are doing a great job and everybody has you in their thoughts and is sending you a blanket of kisses and hugs❤
Thank you so much, the first 6 months was so rough, the freshly unknown and quick rush into it all was very hard :( seeing Denver’s sweet personality has been so good for our souls, I love the family we are & nothing is ever for granted, now more than ever 🥹🥹 giving you a million hugs back 🤍 thank you
What a beautiful young Mom you are, and very courageous. Life brings us so many unexpected events but from what we see you and your husband are handling things with love and sensibility and maturity. I wish you and your family every positive outcome. 💜. You certainly have two beautiful boys.
Thank you for this incredibly kind comment 🤍 seeing the boys together makes my day, they are my whole world 🤍
You are my kind of mom, woman, and person! I love how open and honest you are! I am praying for little Denver and for you! I’m going to be praying for a good friend for you!
Thank you so much for your prayers and kind words !🥰🥹🤍
My best friend's daughter was born with prader willi syndrome and she was worried because doctors gave her a tough prognosis. I told her that only the baby knows her own limits and to not listen to worst case scenarios. That baby is now twelve yrs old and far exceeding what doctors proposed for her. Yes it's scary and difficult, but but no one knows what the baby is capable of.❤
So inspiring!!! You are so right about them being capable more than we know ! I hope to see him push through the stuff we never thought imaginable 🤍
I went to school with a guy who had prayer William syndrome. He was a nice guy and very smart when it came to cars.
To give your best friend more hope - my cousin has Prader Willi Syndrome and is 26 years old! 💗
@@MKFamilyVlog Thank you for this. I will share it with her.
God bless you, sweet Denver ❤❤❤❤I love you and your family
replying so late but wanted to reach out and say thank you for your kindness 🤎🤎🤎
Hello! Both of your boys are so adorable! I think you're doing an amazing job managing parenthood and all of it's challenges. You were truly blessed with a special little angel !
Thank you so much 🤍 it ebbs and flows on good days and bad, but seeing him happy and smiling makes it all worth it. He truly is so happy all the time 🤍
I have had 49 years of health issues and it’s not easy. I’ve had surgery after surgery and so on. My mom was amazing through it all and never left my side until she was diagnosed with Parkinson’s Disease. She passed 5 years ago after a 22 year battle with said disease. Your sons are lucky to have such a wonderful, loving mother! I’m going to be praying for y’all! God bless you!
I’m sorry for the loss of your mom ❤️ I will forever be by his side , we got a loose surgery timeline today for his heart and as scared as I am for him, I know he is so strong & we will all be there for him 🤍 thank you for your kind comment & prayers ❤️
Hi. As a mom with two kiddos with disabilies my heart goes out to you. My older daughter had trisomy 18 and required 24 hour care. She had congestive heart failure, pulmonary hypertension, seizures, gastrointestinal issues, etc. She had a trach and g-tube. From the day she was born we knew each day was a gift. We learned all sorts of different skills to be able to care for our daughter. Please know that with each skill you learn, you will also gain strength; as you pass through the grief of losing the child you thought you would have, you will find joy in child in front of you. Yes, the challenges of our differently abled children can be incredibly difficult, it can also bring great gladness. You will become an advocate for anything and everything your beautiful young man needs. As you move forward on this new and what feels like a very isolating and lonely lonely journey; you have become an educator to those around you. (You're already advocating and educating by having a your channel). You will, never again, take life for granted. Our daughter passed away a year ago. We were blessed to have her for 36 years, 5 months, and 22 days longer than than many. The challenges we watch our children go through, teach us not to sweat the small stuff. Each gain - however small - is a celebration! Our younger daughter is on the autism spectrum. We got the jackpot! The point is there are many of us out here, just reach out your hand. If you need anything...
Thank you for this 🤍 trisomy 18 is actually what I originally thought Denver had while I was alone googling before I found neonatal Marfan syndrome and he fit every marker.. there are a lot of similarities between our children’s conditions, I know that must have been hard on her & the family. A gtube will be our future and most kids I’ve seen with oxygen on his condition do eventually get Trach so that is a path we might cross also. Incredible to have that time on earth with her ! 🤍
I am still mourning what I thought I have, definitely.. it was a shock and every drs appointment tears me down little by little to hear how he is doing inside. It’s so cruel to see a baby go through so much so little. Your post was incredibly thoughtful and made my day🤍
@@isabellajoyy So glad you replied. I will be thinking of you often. We have great days and those that are not. Bless you as you go down your path. Denver is the cutest little guy! If you need or would like to talk just let me know. Ours is a walk that is so different than our peers, but it becomes one that is the craziest and most powerful of our lives and those around us.
@@sherylstradinger2052 thank you so much, RUclips does not have a way to reach out to people & share experiences other than the comment sections, maybe I’ll make an email for this reason as right now all I have is my instagram 🤍 connecting with others truly is so helpful , as I’m sure you know it can feel very isolating 🤍
@@isabellajoyy Good morning! Hoping this might be a good day for you! However you would like to share is ok. This is so cheezy but the lyrics from the Dianna Ross song "Reach out and touch somebody's hand, make this world a better place if you can" has been playing in my brain today. Fits right! Joy in all things great and small. (Ok, so I just dated myself!) Do you have a developmental disabilities case manager to help you navigate services that may be available to you?
@@sherylstradinger2052 I will download that song and listen on my way to the grocery store today !!! 🤍 & we have a lot of people assigned to him physically for almost all body parts ( spine, heart, lungs, eyes, pectus, ortho , pt, ot etc ) but as for someone to help navigate for financial help for his disability we are on a 18 month wait list to even talk to someone.. because his case is very severe & time with him is unknown they are trying to see if they can fast track that for us as it’s all out of pocket until you are approved & they don’t back date it. This person will help coordinate all the social work for him & to be honest I’m not sure what that all entails !
What a great mom you are to your 2 darling boys !!!!
Thank you so much Carla ! 🤍🤍
You’re a fantastic mom! Your videos are an inspiration! Thanks for giving us a window into your life. My prayers continue for your whole family.
🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️👍👍👍👍👍
Thank you so much ☺️🤍 we appreciate the prayers 🤍🤍
Your little Denver loves you so much, you are his everything and he is so lucky to have you. He is so precious. It is completely understandable how you are feeling--isolated, angry, sad ....you are doing a wonderful job and you are an amazing mother. Hugs
You are right about me feeling all those emotions.. sometimes all at once! Thank you for being kind to Denver and I :)
You and your husband have more strength than you realize. The littlest children are the most powerful and are the blessings of your life. You are both so strong and good. Thank you for sharing and know all folks are caring about you all.
Thank you very much 🤍 it means so much to feel seen and heard. Denver deserves the whole world and to have such amazing support behind him and our whole family 🤍🤍
I just found your channel & wanted to get to know your sweet & kind family! It's wonderful to peek inside your lives & I appreciate your sharing all you go through. Your boys are just precious✨and you're going to be in my thoughts & prayers🥰
Thank you for your kindness ❤️ my goal was always to be a shoulder for other moms dealing with hard health issues with their little ones.
Denver is a hoot!🥰 I love how he was making a racket with his toys while you were talking. So serious! What a love bug.
hes so cute with his toys! i need to get better clips of him with some of his favourites because it is so precious 💖💖
Oh he is so beautiful. I wish I lived close so I could help you. You are his mother for a reason. Only you know how to raise him and what he needs when he needs it.
I know it’s hard but one day he will stand and call you blessed!❤️
That would be such a great goal!! Seems we are making steps soon to get him to possibly walk and that would be great!
Thank you so much , you connecting and being kind to Denver and his story is helping 🥰
You are so strong, lot of hug 🙏🏻🙏🏻🙏🏻
Thank you! hugs back 🤍
I Just found your channel yesterday and enjoy meeting you and seeing your family life. Very sweet boys with very lovely souls. And so are you.
Thank you for watching & supporting Denver & our family 🤍🤍 means so much 🤍
You are such a precious mom! It’s obvious how much you love your boys!
Thank you 🥹 this is a great compliment 🥹🤍
There’s A LOT of support out there for parents of medically fragile children. I don’t know where you live but, depending on that, utilize the resources. Child Life/Early Intervention comes to you and can teach him trunk control (how to sit on his own)
I was a medically fragile child (now almost 53) and had all therapies available early on
I live in a small town in Canada that doesn’t have much support , but the city closest to us has many resources for us :) we just got him a specialty chair from his pt and he’s loving it !! We have to drive to get the help but it’s worth it for him.. to get funding it takes about 18 months to 2 years and I just applied last week so I’m hoping this opens more doors for us as well :) thank you millions for watching. Early intervention is truly key to making him have the best life possible.
Sending love and strength to you and your husband.
Keep talking to that camera. It’s a therapy of sorts even if it doesn’t seem like it. The words get said, and heard.
All your feelings are valid.
I pray you find someone to connect with, so that you can lean on them.
Motherhood in general made me feel so isolated. But just one person you connect with, can keep you putting one foot in front of the other. ❤
These words were so kind and validating. To have this space on the internet that is just mine & few people in my real world know about is freeing.. it’s been very therapeutic as you said. I appreciate you taking the time to reach out to me, it really does make my day 💖
❤
Mom here who’s son, now 25 years old, was diagnosed with his physical disability at 8 months old. Perfectly healthy until then, so also a huge shock to us. It’s a whirlwind, feels isolating and definitely one of the hardest things you’ll go through…but, I promise, your sweet little Denver will teach you (and all those that meet him) so many amazing and beautiful things and eventually, you will dream new dreams! There is actually a book titled that “You will Dream New Dreams” that I highly recommend! Sorry I don’t know the author but a quick google search will get you to it! Hang in there! You are doing a great job!
Thank you for the recommendation! I’ll check audible as I accidentally forgot to cancel my membership and have credits piling up 😅 thank you for the comment, having a child physically disabled takes a big role on the parents and it being unexpected I’m sure was hard on you all.. I hope your son is doing well now 🤍
Your kids are beautiful. You’re doing so great as hard as it is. 💝
Thank you very much! 🤍🥰
You tow are the best parents. Denver is a beautiful baby. I pray for him and his doctors and nurses . After all his surgeries maybe he and you will feel better. He will adjust to his issues. He is a smart young man. I pray for all of you. God bless you. ❤😊🙏🙏🙏
I hope so also!! 🥰 thank you for your prayers 🤍🤍
He’s a beautiful baby! Both yoir babies are beautiful and you seem like a very good mommy! Enjoy those little boys!!! ❤
Thank you so much! 💕💕💕
Oh my goodness, it's a lot to do but you're doing such a fabulous job of caring for everyone, including yourself! The whole world seems to be struggling right now, and even realizing how close we are to the end like the Bible talks about, it still doesn't make it easier day to day! I'll be praying for you, your husband, Draven and Denver and just know there are better days ahead! We serve a God who delights in making everything new and he loves us so very much! xoxo
Thank you very much! Times are tough but we are pulling through and Denver has been so smiley and happy lately I think he is feeling a bit better 🥹🤍 that you for your prayers for our family 🤍🤍🤍
You may feel dark and alone, but believe it, you're not. I also, have a special needs child to care for and love. It's hard enough raising a "normal" child today. And like you, I'm the only one I know going thru this situation. And I wonder why and what did I do wrong that I was picked outta a bunch of other parents. It's not fair. I to struggle everyday. It hurts me bc you want you're child to have a easy life and not a hard trouble life. So I thank you Isabelle for opening up and recording you're family's journey. You're a good doting patience parent and watching your videos make and support me realize I'm not so alone, I can do it and that life's not so perfect. No one's life is perfect on paper and pictures, if they say that, they're lying. You're family of 3 boys is so cute too!! Stay strong and don't back down!
hi sally!! want to say yes you are soooo right. no ones life is perfect and the older I get the more I realize how true that really is. Im sorry we have this in common, but im here if you ever need a chat. my instagram is @bellajoyross . 🤎
Both of your babies are beautiful ❤
Thank you 😊 🤍
I know I can never understand what you're going through but I do pray that God gives you comfort and some sort of peace, I pray that He gives you strength to carry on and be there for the little one and his brother and not be strong for them but for you as well and lastly I hope you know that God will never give you more than you can bear and He never makes mistakes.
Sending love and peace ❤❤❤
Thank you so much for this, I some times feel like I can’t handle this all.. but prayer helps tremendously, i thank you for keeping us in your prayers 🤍🤍
Such sweet boys! God bless you and your family 🙂
Thank you Beth! :)
Hi, I really wanted to just let you know that you are not alone! I also feel like it’s hard to find someone to relate to but I do relate to you. I have a 4yr old girl with a rare genetic disorder. She has low tone, developmental delay, epilepsy, asthma, and due to aspiration she takes all her food via G-tube. She is pretty small for her age and only weighs 25 lbs. I also have a 7 month old baby boy as well. I have had many difficult days and nights and it’s hard to watch your baby get worse over time. What I can say is that despite the challenges there are better days. Although she doesn’t talk, walk, sit, or even hold her head up, she does have a beautiful personality and her own way of communicating that just takes some learning. God has given my husband and I the strength to move forward and I pray that he may give you strength as well. I pray everyday for healing over my baby girl and I will include Denver in my prayers as well! You have a beautiful family❤
Hi Michelle, I am so sorry to hear about your daughter. I hope she is happy and as well as she can be
You're doing a great job, Mama! Hang in there and remember that you can always ask for help when you need it. It takes a village, and you're not ment to do it on your own. There are others out there going through the same thing.
It’s a village for sure ! There is a small Facebook group of parents and we all greatly lean on each other for advice and help since this condition is very rare. We are actually currently admitted and have been this whole week and the group has been an amazing support ❤️ thanks so much for your kind words ❤️
Just know you are amazing ❤
Thank you so much for watching & your sweet comment 🤍🤍🤍
Thank you for sharing your journey. I can definitely relate to you! My 2nd born son was born with osteogenesis imperfecta type 3 (brittle bones disease) and it’s been hard, I definitely have all the feelings your feeling for sure. I appreciate you sharing your sons story. ❤
It’s such a mind game. I don’t think anything can prepare us emotionally or physically. I hope you both are well & you can always reach out on my instagram if you ever want to chat ( @bellajoyross ) 🤍🤍🤍
Two lovely Sons
Thank you :)
I relate with you. My niece was born with cystic fibrosis. My mom and I were the only ones that kept her when my sister needed someone. I’m always here if you need someone.
My sister is actually here now helping & visiting 🤍 my mom and sister are my biggest support and I truly feel so supported by them 💕 I’m happy you were able to be that for your sister, I know it means so much to her 🤍
Hey, I just randomly came across your channel. And another mum with a toddler and special medical baby boy. Not Marfans but she seems super lovely. Mary Henderson.
I have two kids, 12 yr old autism, adhd, dyspraxia and so on. Beautiful soul. Lovely kid. And my girl who is 3, she has two rare brain malformations. She’s blind in one eye. Is small and doesn’t eat. She can drink special formula thankfully… she walks and talks. If you ever wanted to connect. :) I know how you feel. Mr 12 was prem and I felt very much like you do. With miss is the same. There’s not many with her condition in my country so it’s hard. Much love to you sweets. One day at a time. One hour at a time some days. Xxx
oh dear, I am so sorry. To see our children go through obstacles that make their life harder is a pain beyond comprehension. Then add on that the condition is rare and it's beyond isolating. I would love to connect if you would be interested :) my Instagram is @bellajoyross - Denver also has eating & vision issues so I understand how you must be feeling :(
@@isabellajoyy don’t be sorry! They are living there best lives. They know no difference. They may have struggles an such, we all do. There’s is just different. And that’s ok. I wish for people to accept more and be less judgy etc yet people may look at me and think I need to not eat as much food, lol I have Pcos and endometriosis which makes it harder ( since having babies ) to lose the weight. I eat very little. So I care. Not really. I’m now beyond that… spent so much of my life trying to please others … it was exhausting. I am now who I am and my babies are who they are. Don’t get me wrong… it is tough some days. But we find our groove and our style. What works for us. May not work for someone else. I am enough! Is something I’m still trying to get my head to listen too lol I am an amazing mum yet I’ve been criticised so much … I have to teach myself that it’s ok not to be ok some days but getting back up and saying I am enough. I am doing my best. And my babies are too. I’ll add you on Insta … off to bed it’s 12.51am here in New Zealand hehe
He’s precious ❤️❤️
So precious 🥹🤍🤍
What a handsome little guy 🎉
Such a sweet baby boy 🤍
Hello there! My son had a massive stroke at the age of 4 months old. Born healthy, but had an undiagnosed congenital heart condition called Co-Arctation of the Aorta which caused the stroke. I was told he would not live through it, and if he did he would be a vegetable. Austin is now 35 years old. He is disabled mentally and physically, but he is here and I love him with all my heart! He sure has done much more than the docs ever predicted!
I just want you to know that it is SO normal to feel how you feel. I went through all the stages of grief...Denial, Anger, Bargaining, Depression and finally Acceptance. I was so angry...how can other moms have SIX or more kids all "normal"?, why me?, why him? Back in 1988, there was no social media or cell phones. I felt so alone. I look back on that period in my life and think I would have been so much more understood and supported had I had those outlets. In no way should you feel less alone or understood because you have them though.
I don't know if you've ever read this, but the first time I did, I felt complete and utter joy that SOMEONE understood! Please feel feel to message me anytime if you need support
Oh Gretchen, I really could not imagine going through this without having a source of information online, it is the only thing that brings me joy when I see kids 4,5,6 years old happy and living life with what otherwise google says is rare.. our kiddos almost have the opposing issue where Denver’s aorta has a very large dilation, ( 11 z score ) , I’m glad to hear he defined all odds and you get to love every day with him 🤍🤍. I cried reading that post from you.. I am in “holland” and I’m trying to grab all the books I can, it’s not what I dreamed of, it’s definitely no Italy , but I’m here, the weather is good some days , horrible others, but I have a good crew of people here with me and they keep me grounded. I do get jealous hearing about others pregnancies & babies, I’m not out of the clear with letting go of those emotions and I don’t know if I will ever.. seeing your baby suffer, be stuck to cords, prepare for surgery and be on medicine that alters who they are is horrible. I’m sure you can relate so much.. ❤️🩹❤️🩹
@@isabellajoyy Yes, I can so relate! I was 27 when I had Austin, I am 61 now. The jealousy I had of other mothers and the pain of my "loss" lasted many, many years. I can't say a specific year when I was "better", but I do know without a doubt that it is my faith in God that got me through, and still does. I still at times think about what life would have been like had this never happened, but those feelings are few and far between. My prayers for you are that you always feel supported, find peace in your situation, and that your beautiful boys both thrive and continue to bring you joy for as long as you live.
@@isabellajoyy I just realized that both our boys are named after a city LOL
@@gretchenwanek8797 haha yes they are !
@@gretchenwanek8797 I’m 27 with Denver 🥹 prayer has been helpful, & to know others pray for him is heartwarming beyond measure. Do you just have Austin or do you have other kiddos ? 🤍🤍
Hi Sweetie. I've worked 26 years with special Education students and I feel for you. My heart is with you. I see you have so many comments, don't worry if you can't respond ....I get it....
Will pray for you.
I'll keep it short...but, I'm here.
Day by day, you'll make it.
Thank you Traci! I'm sure with your line of work you have seen such strong parents, doing the best they can so that means a lot to me
Your son is so precious!! And you are an awesome mom!! Being a mom is a tough job even with “regular” kids! You never know what you’re going to get either. I had 2 regulars lol 😝 then the last one with Down Syndrome, autism and Tourette’s. He changed my life for the better. I’m not saying it’s easy because it’s not with no respite or dayhabs where we are. All that went out the window when COVID hit but everything happens for a reason. 🤷🏻♀️🤷🏻♀️🤷🏻♀️ Schools and communities are much more danger than they used to be so maybe keeping your babies home is a good thing.
You are right about that!! & we also have No respite services here either but my sister helped me a few days ago while I took my son to a birthday party and it was the first time I’ve had anyone help with him, makes me wish I lived closer to family :( but I am lucky they come down when they can 🤍 motherhood is just a hard season all together I’ve learned 🤍
Isabealla, I am a mom too of a child with cerebral palsy. I somehow came across your channel. My daughter and I had a traumatic childbirth . she nearly died twice. Diagnosed with cerebral palsy. Please know you are brave and smart. PMme this road is a long one. I would be happy to help.sending you love.
Hi Lesley, I'm sorry about your traumatic childbirth... it's so hard to explain to others unless it's a path they have also walked on. So please know I am here, I know how you must have felt :( You can reach out through Instagram if you ever want to talk ( @bellajoyross )
Beautiful boys 🙏🏽❤️
Thank you so much 🥰
Denver is very precious♡ God chose you for a reason, sister♡
Thank you! 🥰🤍
7:21 min. Your cute Baby is waving in the background and looks to the camera!
Awe yeah!!🥰🥹
@@isabellajoyy greetings from Germany
You are an amazing mom! I work with children who are medically fragile and even though they are not my biological children I see the struggles the children face. Especially the families and parents it can be very overwhelming on them. I pray that you find a sense of community because that is so helpful. Has Denver received any early intervention to help him work on those developments milestones. Many of our children see their therapist at our care center.
Hi! Yes we were on the back burner up until last week with pt/ot as well as a feeding / speaking therapist, but it seems this month we are getting looked at closer , which I am so happy! Pt/ot comes on may 2nd to our house to help us work with Denver as he has stopped progressing around 2-3 months , minus a few little things. 🤍 thank you for being so sweet 🤍🤍
@IsabellaJoy I hate that the services our children need are so difficult to get at a timely matter. Especially since early intervention is so important but you keep advocating for him and it will all come together. They will model some of the things that you can carry on once they leave and that's going to be so helpful. Hopefully they will help you start a family service plan and that will start you guys off on the goals to work on. As educator alot of parents are told there children will never do so many things because of their diagnosis but I have found that with consistency and dedication from families and the support system the children beat the odds.
I have two sons that were on disability their entire childhoods and then now that they're older we found out they were bipolar and schizophrenic. It's okay to say I'm jealous of other mothers. You have dreams for your child hopes and aspirations. Through no fault of your own you find out that your child will never have a normal life or ever be able to live on their own more than likely it's heartbreaking and it's okay to feel that way my sons are 30 & 40. They can't help with the garden the lawn their own laundry they're not like my other friends adults children that are married working owne & home and have children. They will always need to live with someone to help them. You think when you get older around 60 you get to retire and live a life of relaxation and you find out that that will never really truly happen. Your adult children will never be able to help you it will always be as if their children you will always need to help them. You have feelings that are human because her mother's that doesn't mean we're Superwoman. We're just like everyone else trying to figure out how to get buy from day-to-day the best way we can make the best of what we have. I've had to seek treatment for depression and anxiety, and that's okay.. people always say well if I were them this is what I would do with their children or adult children. Well NO THEY DONT KNOW! And I was a single mother my son's bio dad left when he was 2 & ner once called, It happens. I figure karma will catch up with him if not in this life the next! It's hard it's heartbreaking it's impossible sometimes it's heartbreaking but on the flip side you love your kids like only a mother can and that will bring you joy along with all the work. Our love is for eternity
Oh mama I feel this 🤍 toxic positivity is hard to fight back. People tell you how you should feel, act, and do even in situations you never thought you would be in yourself. I am, like you, also feeling let down on certain parts of what I thought I would have with Denver. I love him but this is not something I would pick for him to go through surgeries and pain and things to be hard for him. I think both can be felt at the same time 🤍
Your babies are precious ❤
Thank you Sophia 🥰🤍
It’s hard but try to take one day at a time. My grandson was very ill and they said if we could keep him alive until he was 3 it would be a miracle. He just turned 20 !!!
Thank you for telling me this story! I pray to god that medicine comes a far way & helps Denver ! These last 10 years for medicine has done miracles for neonatal Marfan syndrome & I know it will continue to be on the up & up. Thank you so incredibly much for this lovely story of your grandson 🤍🤍
If we, parents, especially parents of specially needs children, could live vicariously through our kids, would we? I ask, because Denver is in the background playing with his mobile (?) and the older fella on your lap just pleased as punch. Neither child notices that there is anything but love in that room with them. You know they have that knowledge- This is my brother, and I have to protect him- to the- This is my brother, and when he gets better, I'm going to show him every cool thing I know.
This is what I mean, what I wish. I wish that you get to take your boys on all sorts of adventures from here in the US, because it's good to start next door, to various places in the world.
Hello! We are in Canada , specifically Alberta🤍 Denver is hooked up to oxygen near his mobile & it’s a great OT exercise for his age back then to reach above him & work on his grasp which he has just exceeded all expectations with! 🤍 back then he was and still can be sensitive to movement after eating. It’s actually picked back up these last few weeks and I’m scared it could be a sign of heart failure & something we were told lookout for :( I have a video coming out tomorrow of a day family trip with the kids before we got his heart surgery date . Draven is the best big brother & always interacts with him, their relationship is amazing to watch
Found you today!
Hi just discovered youd video by accident. Your a great mom and ylu have 2 beautiful boys im sorry about your son condition 😞 i cant imagine what you go thru everyday and thinking about the futur. Just wanted to say your son on your lap putting all the toys in his mouth is scary only because i remember on instagram a few years ago before cov when a little boy in Australia put a toy bouncy ball in his mouse and the little boy was 3y old he chocked on the ball and died infront of the parents and other siblings. Im sorry to write this just becarful cuz he puts a lot in his mouth my kids werent big at putting stuff in there mouth. I subscribed your a great mom your doing your best goodnight from 🇨🇦
Thank you so much 🤍 yes draven is always chewing on something when he is teething ! I didn’t even realize it until I edited back some of these were from a gift he got from his birthday and they came with such small pieces I just had to give it away after watching this 😭 I have such a fear of anything happening to my kids, this didn’t help. Also I’m a fellow Canadian from Alberta, hope you are well 🤍 🇨🇦
@@isabellajoyy I thought you were in Canada I’m in Ontario I have family in Calgary. The little boy I spoke of is Alby :( in 2018 age 3y I now always tell everyone to be carful little toys i too never thought much about this when I was younger with my kids but one thing I hated was tiny bouncy balls and my dad gave us many times even now he buys them and I have to say no and my kids are older. Reading about Alby has haunted me but worse is what that family went thru and will be going thru forever. That’s great you gave it away or threw out. We are good always lots to clean at home that’s the story of my life and I make retro videos so my channel very different from yours. I hope your son gets well and his heart gets stronger and he learns to walk and talk. All the best will be following your journey on this side of Canada.
❤So honest❤ So real❤So relateable❤
I hope you enjoyed ❤️❤️
I’m so so so sorry.
Please please please don’t beat yourself up over having those feelings of anger when you see happy moms w their kids…
I wish I had better advice but I am still recovering the loss of my child, who I never was able to hold. Paetyn Jois was diagnosed w Trisomy 18, Edwards Syndrome during my first trimester blood work/ultrasound. I cried the whole way home, even though the tech was smiling ear to ear, I just had the worst feeling in the pit of my stomach. The father, my fiancé at the time, called me crazy when the tears started to flow. Sadly for us, he was eating his words the next day.
I had the worst decision to make and I was all alone. My own mother practically called me a murderer…in front of my 11 year old daughter, while tryin to rub my belly and apologize to my child.
There is so much more but even though it’s been…a minute (she was given back to God, June of 2007) it is not easy to eloquently put into words.
I wish I could wave a magic wand and heal your precious boy-you are doing an amazing job so please do not ever discount all you do each day for those bundles of joy. I cannot fathom the fear and uncertainty but you are handling it with grace.
Just have to take it minute by minute and keep loving w all that you have. You are so much stronger than you give yourself credit. God speed. 🤗 🕊️ sending loving healing positive vibes
My heart reading this… I can’t not imagine what went through your mind. & then to not have support from your mom would have been devastating. I am familiar with trisomy 18 as for a few days I thought that might have been what Denver had before we found out more . and I know that it is a devastating prognosis & so unfair 😭 mama, I’m here. You are so incredibly strong
The cutie is watching us
He’s such a sweet heart 🥹🤍
I saw you today for the first time and I didn't like the fact that you left your little child in a corner on the floor and I'm sorry to see that you are continualy hiding your son's hands that not a nice thing to do and to see
I can understand it can be very difficult to accept the thing your son is not healthy you might have to take some time to accept it I don't know when he was born but you look at him with some sort of shame...you have to love him you are his mother and he needs love and attention more than anyonelse because he can feel it if you don't love him don't be ashamed of him all of us is special even with disability...
I wish you all the best dear Denver🥺😘😇❤🤞
Definitely not ashamed of him.. my two boys are my world. Both of them were right next to me it doesn’t get much closer. This video is to show him off. He is very low tone and holding him is hard. I make videos to show him off, if I was ashamed I wouldn’t be doing RUclips about his journey. This was my first video introducing him, there are others of him hands feet and all.
This channel has changed and is dedicated to Denver, she truly cares about him. This is probably the dumbest comment I’ve seen, you clearly have no clue what you’re talking about. This is negative enough for her and her family. Especially Denver. So if you can’t be positive, then stay off this channel. You clearly have zero understanding what this is like for a family.
@@isabellajoyy Block this asshole. Unbelievable!!
@mashaorso3925 You are a special kind of piece of poop! The lowest type of troll human there is & you should be ashamed of yourself for trying to upset this beautiful mother going through a really tough time with her beautiful baby that she loves very much. Stop being a shitty miserable person & trying to ruin the day of someone going through enough stress & heartache. SERIOUSLY!!!
@@shelliea4621I’m sorry it missed this it went to a filtered section of my comments ! Just wanted to say thank you for sticking up to me 🤍 this comment bugged me so much when I got it because I don’t feel ashamed of him at all :( thank you again millions for sticking up for me 🥺🤍
Momma it sounds like you need help, i lost track of how many times you said "its hard" you sound very depressed. ❤
It’s definitely been hard , don’t know how else to describe how I feel, so many complex emotions 😔 I’ve been seeing a therapist and I really look forward to our meetings, some days are worse then others and it’s been getting more difficult as surgery time gets closer! Im hoping when he recovers and it gets easier 🤍🤍
I have a grandson who is medically complex nothing like yours but he is autistic has epilepsy and ADHD. I can relate to the struggles
So many struggles overlap no matter the diagnosis. It’s so hard on them and the whole family 🤍🤍 it’s a part so hard to explain to anyone unless you walk it in some capacity. Thinking of you, him & the whole family 🤍
Oh Mama... u look nervous with Denver... everything always works put the way its supposed 2. I promise. ❤
Was so nervous people would be evil & mean towards Denver. Which I have had my fair share of mean comments, but Denver is such a sweet and loving soul & really is the happiest baby ever 🤍 I know I’m strong enough now to deal with the jerks on the internet & I’ve come a long way 🥹 I agree it will all work out , he’s already defied so much & is so strong! 🤍🤍
@IsabellaJoy Denver has by far the cutest cheeks ever!!! He's PERFECT just as he is... and so are you and ur family. I personally think that children choose their parents... Denver chose well!!! ❤️
@@martinemikita9281 when I was younger my mom would tell me a story about how I picked her to be my mom, so when Denver was born I thought back to that story & believed he picked us... ahh crying haha so emotional this week but thank you so much for your kindness 🥰
So sorry that this has happened to you both,😢 have you watched Sébastien...he has a different disease...but it may help you to see her story too
Hi Debbie ! yes its been a whirlwind, i wish Denver's life was easier on him, he goes through so much ( as i write this he just got out of surgery yesterday ) the highs are HIGH and lows are LOW, very conflicting emotions. I have reached out to Sebastians mom after another comment mentioned her 💖💖
Yes, I can't emagine the emotional roller coaster it must be! Life is not an easy journey is it? I watch Freya Lucky Arm too, she has the same diagnosis as Sébastien...but every child is different. Freya does better, but does not have as many physical problems heart, brain, eye problems either. Every child is different. One thing they say not to do is GOOGLE the Disease....Everyone does, and it's just something that creates more anxiety because most diagnosis are so complex, but not a true science for what life will be for your own child. You're a wonderful mom, both your boys are sweet . Thoughts are with you
❤❤❤❤❤❤❤❤
🤍🤍🤍
Maybe you could try "support chairs for disabled children." There are so many options these days like inclined chairs. That will allow him sit up and look around by himself.
We have the special tomato chair which is a chair common for kiddos with low tone, our OT isn’t in love with how it’s working for him so she’s been on the hunt to see how we can adjust it or other ways it could help. He definitely wants to sit up and do more, but his head is so heavy our drs don’t think he will roll to hold it up for awhile :( I truly think he would love to sit and be looking around more like you said … i hope our new ot/ pt can help us out with exercises to help in edition to other equipment as well 🤍🤍🤍
@@isabellajoyy I wish him the very best. I know that he will be just fine with a loving mother like you advocating for him.
@@charlestonjorge6891 thank you for that kind comment 🤍 it made my day 🤍
Beautiful children, beautiful mother...
Greetings from Germany!!!
Do you have a swing for your youngest son? Could be great.....
Thank you! 🤍 yes we do upstairs, it’s one of his favourite places to be :)
@@isabellajoyy Great 🥰🥰🥰🥰🥰
Do you or your husband carry the gene for marfan? I hope it help you to know that I will be praying for Denver, you and your family. May the Lord give you comfort, strength and peace. ❤️🤗🙏
Hello! No we both were tested and Denver’s case is de novo! 90% of neonatal Marfan is de novo :) thank you very much for your prayers 🤍🤍
Sweet girl. I am thinking of you. I can't even imagine.
Thank so much ❤️🩹 hoping surgery goes well for little guy, it’s sooner than we first were told but I hope it gives him the best quality of life 🤍
@@isabellajoyy I will be thinking of you guys. You're so strong.
I looked his condition up, I saw people living a life, hold your chin up, just some rough times now :(.
The neonatal variation of Marfan syndrome is the most severe of the condition.. unfortunately, they go through a lot more at an earlier age & it is a life-limiting condition :( medicine has come a lot way for this condition in recent years and we are hoping this give us more time with our sweet boy. Thank you very much for your comment and for being so kind!
Are you getting any counseling? I've never seen your channel before but I couldn't watch and run. I know everybody's trying to be supportive but I know you are going through it. And you're worn out. And you have a long hard ride ahead of you. Please, please, please do not try to do this without a good therapist for support. You are standing in the gap for your family and if you break it will all collapse around you. You're the only one that's gonna be able to carry this for your family and your husband is gonna have carry all of you as one big giant package balanced on his shoulders. He needs counseling too. Please consider it...
Yes I’m very pro counselling & we originally connected with a couples counsellor to help us through this. She was great , but I could tell she was struggling to help us with this difficult time we were going through. Our drs have connected us to the hospice counsellor through our hospital and since seeing her it’s been so helpful. I truly look forward to talking to her 🤍 you are totally correct with mentioning the wear and tear of our whole family. It is very physically& emotionally draining to go through this with Denver, & I hope we can be the best parents to him 🤍
I only just found you today! Hope you do not think I am being rude! You need some Colour on your walls if you are allowed to decorate! Even blocks of colour!
Yeah my husband definitely wasn’t on board with all white. but when we bought this house it was sooooo dirty, like beyond dirty and I was 32 weeks pregnant, all I wanted was a blank clean white canvas. The nesting bird in me was freaking out haha. Our upstairs has a picture and something on every wall, but downstairs this back wall you see is so awkward I haven’t found something I love yet. Since it’s the kids play area I was thinking some picture I could change out but haven’t found exactly what I imagined. Behind the camera is a beautiful reading nook I haven’t shown as I usually film in front of it :) I’ll be sure to show of more of our house, still getting used to videoing myself haha thanks for the view & comment it means so much to me :)
@@isabellajoyythank you for replying! I had my daughter at almost 44 ! My Husband died when my Daughter only 2! My daughter was ok til year ago . Now unwell Eat Disorder Unit with Anorexia! Our Situation very different but we share similar worries and heart aches! I would like to send you a card!
@@irenedavo3768 I’m so sorry that must have been so hard to raise your daughter without that support. My dad also died when I was young and my mom had to do it, so I always look up so highly to parents having to do so much amongst all the hardship they have went through themself so I applaud you! I’m sorry your daughter is going through that, I know there must be so much you are going through with that so I hope all goes well with her ❤️❤️❤️
Hi i heard u say in your other video the ultrasound was normal. How can that be? Its terrible the doctors didnt prepare you
It was the worst day of my life, I was told that they would do an investigation to figure out why that happened, since it was so physically apparent there were big issues both inside and outside of his body. We had a student tech so that could have been the reason, but either way when he was born I went from cloud 9 to almost a mental break.. even after he was born I didn’t see him for 2 hours and no one told me anything, I thought I was being wheeled in to see my “normal” healthy baby . But he was struggling to breath while they waited for an ambulance from children’s hospital to get him. I only saw him for 5 minutes before I had to wait 2 days at our small town hospital recovering. Oh it was beyond a nightmare for me. I really block it out until I open my memory and think about it..
Wow i have no words for why we are made to carry our loads. But u are a beautiful strong woman congratulations
I m not big on being rich. But thats a really big malpractice suit you have there. Take the money
I love you always Denver and you have a great mommy and a older brother who looks after you and very cute and very beautiful and very nice and very beautiful baby I wanna pick him up and spoil him all day and all night long do you have a rocking chair so you don't have to be on the rug or the floors do you have any furniture at all because you can get help from united way they give you free furniture clothing and toys for free of charge
I actually just got another rocking chair for downstairs on Sunday! thank you so much, Denver's oxygen only reaches certain areas of the house and thankfully he can reach to this play area we have where I was filming this 🤍
Volume low
Your lil boy that you were holding in your lap was putting most of thise toys ALL the way into his mouth. You need to throw that toy away
He is the worst with toys in his mouth with teething , especially his molars 🦷 we are finally done his teething journey so end is here 🥳
Denver is sooo cute, just super skinny. Maybe switch him on another formular especially for children with bit of underweight?
Greetings from Tübingen, Manuela
Sooo skinny :( Marfan syndrome is characteristically tall & skinny, but he just has 0 appetite. We are on a 30 cal / ounce formula with little to no progression. They seem very hesitant to want us to increase amount ,which is odd since his heart issue doesn’t have us on any fluid restriction as per our cardiologist. I really just want him out of the 13 lbs and get bigger for surgery , just seems like a battle we can’t beat
@@isabellajoyy oh okay, I understand :-(
Have a lovely day🥰
For the love of all things holy, keep those small toys out of your older boy's mouth!!!!
…. I’ve since thrown them out
Don't feel obligated to expose all your son's medical details and personal private issues to the world. There are crazy people on RUclips and everywhere on the Internet, you owe RUclips nothing and can keep his private life private
Thank you 🤍 I do keep a fair amount private and choose to share little tidbits of our life and hardcomings to relate to those who are going through those times. It’s isolating especially where I am from a small town.. You are right about some crazy people on social media & some very rude people as well :( I try to come from a place of love and information. Denver is such a sweet boy and things are just harder for him in general. But we are working so hard with him and it’s definitely not as easy. It’s a balance of wanting people to understand families and children with special needs and making sure that others feel seen & heard and also respecting that it’s not easy for Denver or for us🤍 I’m already loving looking back on some of these videos ( seriously I watch the eye glasses video probably 2 times a day I think it was such a sweet moment ) but there are things I watch that I know I would never in good conscience be able to talk about or show
Jj
Why is he in jammies all the time I like to see him in blue jeans and a short sleeve shirt and socks and shoes
where we live in Canada, winters are very cold & he has poor blood circulation so it's mostly to help keep him warm. now in summer, he is usually in a short sleeve and maybe just a diaper to keep cool 🤍
@@isabellajoyy Ignore silly comments like this. You don't have to explain why you keep your son warm/cool & comfy! His comfort is the first priority. Especially when you are at home. I've seen a few comments rub me the wrong way. Just know that with this comes some people who will criticize the silliest things. Please ignore them. You have ENOUGH to worry about. Prayer & hugs to you.
@@shelliea4621 thank you for your kindness 🥹🥹 this video on particular got some comments that upset me about Denver being far away , unloved etc.. I try hard to not let it get to me 🥺 not this comment in particular, but I’ve had some evil comments , trying to call Denver names, tell me he shouldn’t be alive & some truly horrible stuff :(
Have you heard of / watched videos by The Fuller Fam - @thefullerfam2303 They have triplets with various medical complexities including needing oxygen & g-tubes. They might help you feel not so alone.
I just followed them !! Thank you very much 🤍🤍
It will get better ❤️🩹
Thank you Mary 🤍
You have two beautiful boys. Prayers for Denver on his health journey. I know how hard this must be for you. Try not to look so far down the road. Take it one hour or day at a time. You are in my prayers.
Thank You! Denver has taught me so much about taking the road one step at a time, he is so incredibly strong. Your prayers and kind comment mean the world to us, thank you again very much.