story of my son's birth & his unexpected disability
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- Опубліковано 15 вер 2024
- Our dear boy Denver was born on August 3, 2022. Despite all normal ultrasounds, he was born with a condition called Neonatal Marfan Syndrome. Please keep our boy in your thoughts and prayers for his long road ahead. He is our amazing little soldier & he is so loved.
40 years ago my 3rd child was born after an uneventful pregnancy. She spent the first 2 months in a NICU, and had a left side stroke from the high push on the vent, which left her non-verbal. She has Down's, is severely autistic, and survived Guillane Barre at age 20. I can honestly say I had more problems adjusting to her disabilities than she did. She is usually happy, and will mirror back to you what you give her, so she is a constant reminder to be always grateful and patient, and to count small victories. Life did not turn out the way we had planned, but I can tell you for certain, that this journey will be what you make of it, there are joys and mercies along the way, and you will meet wonderful dedicated medical and educational caregivers, and other parents, that you otherwise would never have known. I wish you peace. Grace and strength is available for the asking.
Thank you for this, your outlook is amazing 🤍 it’s definitely not what I expected and still in the shock of it all trying to grab footing while we plan surgeries I feel i have been on autopilot. I know when more little victories come I will be celebrating them as if he won the olympics. 🤍🥹 thank you very much , hearing from other moms help me and I pull some strength from it 🤍
@@isabellajoyy I am in favor of making sure you see as many other special parents as possible, and to get a therapist to talk to for the things you feel you can't burden family or friends with. Totally get the shock not wearing off, it will take time to work through. Like you, I think if I'd had any inkling of a problem, it would not have been so disorienting. It is okay to grieve the normal child you thought you were going to have, and you still have a normal child you want to give as normal a life as possible.
@@angelaj8958 this is exactly how I think.. thank you for making me feel seen and heard 🤍🤍
She must be so mighty! You should make a UA-cam video about how much she has survived, experienced and all of those hurdles she has powered through. I think you sound amazing and you must be quite a pair! ♥️♥️♥️
@@isabellajoyyI never felt labor pains I had a baby boy who is 4 months he was 7 1/2 weeks early I feel bad you had them I am going to watch you
As a nurse for 38 years, and spent 13 years in Pediatric homecare. This is so very tough . But I will say.. God knew you & his Dad could care lovingly to these very special babies. Definitely find a support group.. apply for assistance you could benefit from.. take breaks if you can & involve family as much as possible. Denver will show you what unconditional love is . Feel no guilt. I will pray for your family.. TAKE ONE DAY AT A TIME. 🫂 L❤ 👶 👨🍼
Thank you for this 🥹🤍 Denver is so incredibly loved by my husband and I . We both want the best for him & work hard to make sure he has a great life 🤍 thank you for your prayers 🤍
I, like you, had a very normal pregnancy, but my son was born with a rare genetic mutation that causes seizures along with other disabilities. He is now 7 and life has been rough, but I couldn’t imagine my life without him. We have good days, great days and very bad days. I have become a better human since he came into my life. My priorities definitely changed and I can honestly say I am grateful for him. He made me grow and all I can say is right now it might be very hard because it’s new, but you will start seeing the silver lining as he gets older. Blessings and hugs 🤗
Thank you! 🤍 it can be hard when it’s unexpected , and I find myself so in love with him and loving so much about him , he is such a sweet baby boy. I hope your son is well now, I know it’s hard on everyone 💖
May I ask what type of rare genetic mutation caused your son’s epilepsy? I have 2 adult sons with epilepsy as well as other disabilities, and they too have a rare genetic mutation. But, it’s so rare in males, they are not sure if it is pathogenic.
My grandson was born with goldenhar syndrome, so I under stand. He has cranial facial abnormalities, is deaf, had severe cleft lip and palate,also he had to have heart surgery 3 weeks after birth. He also is on the autism spectrum.
I think God gave Hudson to my daughter because she is a remarkable mom, he's never treated as tho he has a disability and yes people stare and whisper when they're out, she takes him everywhere, never worrying about rude people and their stares.
Hes had many surgeries and will have many more.
We love him sooo much, he is a blessing, I thank God for him every day.
I'm not saying it's been easy because it hasn't been.
I will pray for your little guy, and also for you and your husband. Have faith, love and spoil him every day.
You can get thru this 💖
Your daughter sounds like a remarkable woman. I know that it would have been so hard to see her baby boy go through so much, so early on. I hope your grandson is doing well today, he is blessed with an amazing grandma & mother :) Thank you very much for your prayers for Denver!
My heart goes out to you. I had to click on this because my grandson was born not breathing and dx with HIE. It's so hard! We don't know all the ramifications while he's so little. I had a very teary Thanksgiving. But I think there is a benefit in not looking too far ahead and in celebrating each milestone, no matter how small. In not looking for only what might be wrong but in rejoicing over what goes right. And just loving them. Praying for Denver and your family as I pray for my own grandson's health and healing. Hugs to you!
I’m sorry that must have been very hard on you & your family as well. The waiting game truly is so hard . I hope mom & dad are doing well, I know exactly how hard that must be for them mentally. The milestones really are so special ❤️ I pray for you & your family 🤍🤍
@@isabellajoyy Thank you for your kind words and prayers.
Oh my dear!!!!❤ I'm praying for you and your son! God gives us Blessings, in so many different shapes and sizes!!! Just kiss and hug him everyday!!!! God loves you and that sweet lil guy!!!❤ I pray God helps you through this hard time!!!❤💞
@@Gramaron1313 I definitely snuggle him so tight! Thank you very much 🤍🤍🤍❤️
I’m so sorry you are going through this. It’s so unfair. Sending prayers for your precious son Denver (I love his name btw!) and praying for you & your family. Hugs ♥️
Thank you very much for your prayers & support ❤️
I just found your channel and I honestly know exactly what you’re going thru. My son was born at 28 weeks with a severe heart defect called AV Canal. He’s 3.5 now and gotten 2 heart surgeries so far and will need a 3rd one day. He also has level 3 autism. It’s been a journey but you and your son will both develop a strength you didn’t know you had!
Hi Lindsay! I was not familiar with av canal & I just took the time to google it. I’m sorry your son went through that, seeing your little one have surgery multiple times I’m sure has been very hard on you as well 😔 thank you for being so encouraging, especially as we near Denver’s time for his surgery 🤍
I just came across your videos and want you to know my heart goes out to you. You are such a wonderful Mom. I said a prayer for Denver today.
Your Prayers are incredibly appreciated 🤍
I wish I could give you the biggest hug ❤ I saw your video where you’re Ng feeding your son and decided to watch some more videos of yours. My son was born a month after yours and diagnosed with severe HIE which has now led to multiple diagnoses like cerebral palsy, mild-moderate hearing loss, microcephaly, visual impairment. It is hard and heartbreaking as a mom but I hope you know you’re not alone. You and Denver are in my thoughts and prayers ❤
:( I know what you must be going through and I am incredibly sorry. It’s such a indescribable feeling to see your baby struggle with life, especially when a lot of it was unexpected… I wish we didn’t have this to relate to, but hi, I am happy you are here & I hope you know I am here for you 🤍 how is your son doing today? How are you doing ? 🤍
@@isabellajoyy it's so heartbreaking and it was traumatic having gone through a "unremarkable pregnancy" expecting nothing to be wrong and be blindsided right after giving birth. I can relate to when you said you didn't know anything was really wrong until you saw your son for the first time because the doctor's vocal tone/word choice didn't sound too concerning. I went through the exact same thing! I also frantically started googling things because they just gave me a printout explaining my son's condition to me and I didn't realize the severity of it. I'm happy the algorithm
suggested your videos to me. I feel like everyday with my son is somewhat of a struggle but than it quickly becomes part of our day to day life. How have you been doing?
@@Angieoh9393 honestly that part was the worst of it all… & I’m sorry we have that in common.. i really can’t keep that memory in my brain or else I start spiralling.. I also had a unremarkable pregnancy . Was your son your first ? 🤍
To think that you and your family are going through all of this but you have found the strength to try to give others a fighting chance is so awesome.
No matter wether it is long or short your baby will fill a special place in your heart and you are blessed to be chosen as his Mommy.
Thank you Savina ( love your name 🥰 ) I hope other mamas feel seen and heard when they come to this channel.. 🤍🤍
My heart & prayers are with you & your family. Thank you for the strength & courage to make this video creating a loving, caring community. ❤️🙏❤️
Thank you for your kind comment & prayers 🤍🤍🤍
As a long time foster parent of medically challenged children my heart feels for you. I love my girls as if they were my own and to have the special bond with their families as we all grow together and learn is very special. May you find extra support with someone who can share your journey. ❤️❤️
Thank you very much ❤️ I hope you and the kids are doing well ❤️
UA-cam recommended this video, and all I can say is I’m so glad that you shared this, ive seen a lot of your recent videos with Denver and have followed for awhile because of my sons abnormalities It helps me feel less alone. But I’m almost at the 1 year mark with my son and I haven’t yet been able to process his birth. And to hear you process to us your traumatic birth experience, it helps me not feel so alone in all those thoughts I still have and had in the past. I also did not know about his issues until he was born, one of the biggest things we saw was he had an arm defect. And I was with my husband prepared to have a healthy home birth but in reality is was far from that.
I very much appreciate you sharing your thoughts and processing through it all. I don’t feel as alone, everything you felt and feel is valid. ❤
You are an amazing mom and look at him now , obviously things are still complicated but he is the cutest baby i have ever seen no joke
🥹 thank you very much 🤎🤎🤎
I am so sorry to hear that you and Denver are struggling. I will keep you in my prayers. Thank you for sharing your story with everyone! I wish I could give you a big hug and tell you it will get easier. I can only tell you to surround yourselves with lots of supportive and loving family. I worked at Riley Children's Hospital for 10 years. I have seen a lot. Always remember that God is by your side. Your oldest son will grow up with a deep appreciation for what disabled children go through and will learn unconditional love for all people.
Thank you for your work at chiledrens. Our children’s hospital has been so kind and our care has been amazing , I have so much appreciation for everyone there 🤍 our oldest is the so incredibly amazing with his younger brother. The love they have for each other is like no other 🤍🤍
I just came across this video for a reason. For the last 11 years I have been the office manager in a skilled pediatric nursing home. We do not age them out after they become adults. We have residents from 5 months old to 65. We have 130 beds and have a "waiting " list of families and hospitals across the country that send us children to care for that are not able to live in the home.. for all sorts of reasons. Amazingly, we do rehab a few who get well enough to go home to their families. When people find out where i work, every one of them say "that must be so depressing " . My answer has always been "its the most humbling and meaningful job I've ever had." They are still human beings that feel and we don't know really how much they really understand when they are non verbal. If i can help you in ANY WAY, please reach out to me. I really do understand what you are going through. PRAYERS for your family.
Thank you for your prayers 🤍 it’s so hard to explain the whirlwind of emotions until you see it first hand as I’m sure you do. Watching Denver struggle everyday to do things that come naturally to most is heartbreaking to watch. He tries so hard, he is so happy and content and to him I know he doesn’t know yet and is just happy being with dad, brother and I , I pray he always remains my happy sweet little boy ❤️❤️
I am so sorry that you, your husband and your sons have been given this challenge in your lives. I am sending you prayers for strength as you walk through your life every day. 🙏 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
You will also be giving other families so much help as they learn to navigate their own lives. God must think you are extra special to give you such a special gift of your son. May God Bless You and protect you in his arms.🙏🙏🙏🙏🙏🙏
it has been a difficult road to navigate, especially at first. 10 months later and it's still an emotional rollercoaster at times. Thank you so much for your kindness 🤍
I can't even imagine what you are going through. I truly wish I could give you a big hug. I will send you prayers of strength every day and I will also follow you and your story.
I'm keep coming to this video. I'm so touched by your situation. And I'm astonished about how huge mothers love is.
I understand. My son has different problems but my heart is broken like yours. I was overwhelmed. I was broken. Felt like no where to turn. Friends & family didn’t understand. But there is light at the end of the tunnel. Joys I never expected and learning more patience. The wonderful people I would never have crossed my path. I grew as a person. Became an advocate and a nurse. I became a better mother. So grieve for the child you didn’t get but embrace your new imagine of that perfect baby you have. We all have disabilities of one kind or enough. Focus on making his life the happiest for him. And know people around you will grow and learn to accept him for him. ❤ sandra
You are right, it’s hard to explain to anyone that hasn’t been down the path. 😔 I am already doing things I never thought possible, stronger than I ever have been in my entire life. It forces you to be better, which has been transformative. Thank you so much for your comment and I’m glad you have became an advocate 🤍
Thanks for sharing your life, it helps all of us, including yourself! We wouldn't knowingly ask for very hard things, it is however a vote of confidence from above. The constant here on Earth is change. This life is meant to stir our souls and understand/experience our Creator. Since I'm a dad with older children, I'm hoping your husband continues his very big and key role in your family also!
You are so right, when you think your life will go a certain way, paths change and you must go down it. It’s been the biggest lesson I’ve learned is that I can’t plan everything in life, there is a biggest plan in action I don’t control. My husband is an amazing husband & father. He works so hard so I can stay and raise our children , which now more than ever has been apparent it’s what I’m meant to do. ❤️ thank you for your comment and learning about Denver
He is so gorgeous! Those eyes!! He love watching you momma. I love his little hands too he has the longest little fingers they're just so adorable! Both boys are beautiful you are a fantastic momma❤❤❤
yes! very long delicate fingers 💖
Sending prayers, hugs and good vibes for Denver (what a great name!), you and your family. ❤
Thank you!! Loved the name Denver since naming our first , so I was so excited to use it again :) 🤍
My heart breaks for you and your family. Thanks for sharing your story with the world. We need to hear it. I’m a great-grandmom and I would feel gutted if I heard one of my great-grandchildren was born handicapped. I will be praying for you, Denver and your whole family. Every baby is born with a purpose. You and your husband were chosen to care for this special child. I believe Denver will bring love to everyone who comes in contact with him. 🙏🙏🙏🙏🙏🙏
❤❤❤❤❤❤❤❤🙏🙏🙏🙏🙏
Thank you! My mom was home watching my oldest when I gave birth, she was the one who first came to me bedside and was there through it all. I saw how broken she also was and my mom who never cries was crying along with me. I think we are closer now than ever & I lean on her a lot 🤍 thank you for your kindness & for watching Denver’s story 🤍
You are your sons advocate and loving parents … no one wants to know their child is poorly and may have a shortened or different life than you expected. There is a beautiful young mum called Stephanie George who has a child with severe disabilities (different to your sons diagnoses but that’s not the point ) I am sure you will find her videos helpful and if you reach out to her she may help you as she will understand how you feel xx
THANK YOU!!! I just followed her ❤️ it’s been hard to wrap my head around not having the life I dreamed about, 8 months later and there are days I am in denial , and days where it all feels just all to real . It means so much to me that you watched & took the time to write such a lovely post & recommend her Chanel. Thank you incredibly much ❤️
@@isabellajoyy I only just saw your reply .. thank you ❤️… you touched my heart when I watched your video … xx
More than 50 years ago I read a story in the readers digest about a distraught mother whose child was born with a disability that took up all her time and strength. One night as she was preparing herself for bed, she burst out to God asking him why he abandon her child? Why doesn’t my child have a guardian angel? God answered her saying “I have NOT abandoned your baby, she does have a guardian angel, the best one I found.” The mother asked Where is she? Where is this guardian angel now that she is needed? God answered “She is here”. The mother turned around to look for her and saw no one. Once again she questioned God “Where is she?” His reply stunned the mother. “I wanted the very best guardian angel I could find, and that’s why I chose you.” I have a feeling that’s who you are. I know it’s going to be a struggle at times, but I believe your love for your child will give you the strength you need to raise him and lead a good life despite his disability. 😲
@@gwennblau8371 thank you Gwenn 🤍 reading this made me cry so hard. Today has been extra hard and reading this warmed my heart. Thank you for taking the time to write this, your kindness is so incredibly welcomed 🤍🤍
My heart breaks that your family has to go through this. I hope you find the support you need. Know I will be praying for comfort and health for you and Denver. The name is beautiful as I'm sure he is❤
Thank you so much for your prayers. I loved the name Denver since we were naming our first, I was so happy when I was able to use it :)
I’m so sad that your family is going through this. And I’m sorry that your heart is breaking for procedures that Denver may need to go through. Your channel is going to help others. Thank you for sharing. You are not alone❤️
Thank You Wendy! That is very sweet of you 🤍
We are all good. I love your sharing of your families journey. The love for your boys is huge. Denver is absolutely adorable and his happy face makes my heart warm. Take one day at a time and enjoy your adventure.
Pregnant now. In 2018 I lost my daughter at birth. She had triploidy and turners syndrome together. Ultimately it was a heart defect that never let her take a breath. My heart goes out to you. I'm having a difficult time emotionally carrying this baby. I know the loneliness in a different way. A mother's love can be so intense. Keep telling your story.❤
I am very sorry :( it’s not fair to have you or your daughter go through that. My mom also lost a daughter at birth full term& I have had her to lean on and it has been helpful for these sensitive and confusing emotions. She went on to have my sister and I know it was hard on her. I hope you have friends or family that are there for you, and if you ever feel like you want to talk, I have an open instagram and would love to talk. 🤍
I’m so sorry you are going through this , I admire you’re strength . Especially when you had no warning or preparation of this happening to your son .I’m 8 mos pregnant currently and I feel your pain and the worry we all fear .I hope your son has the best life possible. You got the most beautiful hair by the way .
Congrats on your pregnancy!! 🤍 thank you very much for your sweet comment 🤍🤍
I hope that the support that you receive is loving support.
I was next to a pre natal classmate when we both had our babies at the same time…divided by a curtain in the recovery room.
Her doctor was describing the babies large port wine stain to she and her husband….
My first baby was screaming without consolation
I could not even think about her babies situation at that time
No words….too much
Just, May the people helping you and your precious son be kind to you….
Kindness is something I look for now within people more so then ever 🤍 thank you for your comment & kindness towards Denver’s story 🥰🤍
My first child was also a boy. my then OB decided to become a general practitioner (family medicine) so I had to get a new OB. She was on vacation at the time so the receptionist looked at the hospital’s OB list and she said “Erie” it was familiar because my friends and my mom went to them. It was two women in the practice. Right away there were issues. I never got to hear my son’s heartbeat because they claimed it was dangerous to do so. this was 2009. I had ultrasounds every appointment and even had special appointments to do more. I thought it was odd but didn’t think anything of it. They had the medical degree not me. Often my appointments would be canceled last minute. Or I’d sit in the exam room for over an hour waiting for the doctor. No emergencies, if they are at the hospital, it’s one of the doctors while the other is at the clinic. Once I heard one out 20 minutes running late and she’s in the hall talking about last night’s baseball game and then started talking about her new house. So by the time she stopped talking in the hall, 40 minutes had passed by. Both had taken me off a medication I shouldn’t have been taken off of. Weeks later I felt pain and they had me come in for an emergency appointment. They had me sit and wait. I had to watch joyful moms go in for ultrasounds to see what they were having. Meanwhile I’m in pain thinking I’m losing my son and they have me sitting and waiting. They say there’s a tear in my placenta and I’m sent home. Sent home. A few days later I have severe pain and I go to the ER. The doctor goes out into the hallway and I’m lifeflighted to Cleveland clinic where I had my son. He passed away. I’m then asked questions about my OB care. They forgot to give me my GD test. And I’m well into my second trimester and no heartbeat check even though I’d often hear them do that for other moms at the clinic. It made no sense. At the same time my mom had a tumor in her uterus. The doctor at the practice whom I’d say had done the most damage, refused to operate on my mom due to something off on her blood work but that was due to the tumor. ANother doctor in the same hospital did the surgery and just in time. Soon we learned this OB practice had 5 pending lawsuits. About a year later they had a sherriff’s sale. And I’m happy to say today the OB whom I feel is most at fault for my son’s loss, is no longer an OB.
I’m so incredibly sorry this happened to you. Negligence in the medical field is not talked about enough, and I know it must be hard for you to tell your story. I have an open instagram if you ever feel you would like to talk more 🤍
Unfortunately most doctors today treat patients like they are disposable or just a number and a dollar sign. With the technology we have, we should be so much farther. But it's not the technology failing us it's the doctors themselves. This Is happening with doctors in every field. I was in the medical field for over 25 yrs and still keep up with what's going on. It's only getting worse especially since covid doctors have become like numb to even basic human morals and the oath they take when becoming a doctor. I remember when a doctor would call you at home from their house just to see how you were feeling from being ill or recovering from surgery. My parents are aging and I have to make a phone appointment (always days out or a week or so) just for them to return my call even if I only need to speak to them for 5 mins tops. I'm so sorry for everyone's negative experience dealing with incompetent, unethical or lazy doctors. I pray for the sake of human life this changes. GOD bless you all and give you strength.
Not sure how this came up in my feed but I want to give you a hug and share..I was born with deformities from a condition called fibular hemimelia. While definitely a completely different condition, doctors gave my grandparents the option of amputating a leg at birth. They said no thanks. I went on to become a New York City cop, journalist, and now entrepreneur. This condition affected my life in so many ways and my grandparents grew up telling me to hide it away like a disease so that always gave me such a complex and insecurities but I see todays generations so much more accepting of differences, deformities and disease and embrace it. I am petrified to even have kids because of stories like mine and yours. I’ve been going to therapy for 3 years for this and I still don’t want kids💔
I was not familiar with fibular hemimelia and just took the time to look it up, thank you for sharing your story.🤍 what you have done is amazing, I’m sorry that you ever felt you need to hide yourself, that breaks my heart, especially as a mom to a child with limb differences, I hope I never make him feel he needs to hide himself, the world can be cruel enough to have that in your own home as well.. :( I definitely have intrusive thoughts of going through this again and it terrifies the heck out of me..
Mightily praying and sending so much love. Thank you for sharing.
Thank you for your prayers and love. We appreciate it so much 🤍
Thank you so much for sharing your story, you are an amazing mother and please don’t forget that. At 20 years old I had my son at 41 weeks, and while we thought everything was perfect, my son was born with an extremely rare genetic disorder that requires him to be fed through a g-tube exclusively and we have so many appointments and therapies. He is 14 months now and is sitting independently and starting to army crawl :) you are not alone. 🩷
Hello! I know that must have been so hard and still hard on you and him. I am here for you 🤍 I’m so happy that he is sitting independently & army crawling that’s so awesome ! I’m sure happy tears come when it happens 🤍🤍🤍
I’m so sorry you are going through this. This is so unfair. All I know is that when my daughter was diagnosed with autism. I thought my world had ended. For a good three years. I fell into the deepest pit of grief. You will find your way. And your people. I know nothing can make this feel better. I’m sending you all the love in the world. From Australia.
Look up Stephanie George. She’s a young cdls mum. There are people out there going through similar things. And thriving. I wish you and your baby boy, all the best. ❤
I have just recently found Stephanie and her videos are so so inspiring 💖 I know how hard it is, so I am sorry. It does indeed feel like life you know it is over. It’s not fair to see our kids have a harder time then most :( thank you for your kind comment & learning about Denver 🤍🤍
Thank you so much for sharing the Story of your beautiful son.
Thank you Manuela 🤍 he is such a fighter !
Honey you will never be alone. Your UA-cam family plus your friends will keep you wrapped in their arms and make sure that you have someone talk to when the going gets tough. Your beautiful little boy will be well cared for by you and your family. Remember when the going gets tough the tough gets going. God bless your family and prayers for your little babe.
It hurts to see how broken I was in this video just weeks after his birth... You are right about leaning on family, and now having people to share experiences through youtube
I came across your channel last week sometime. It was a video where you were packing lunch for a long day at the hospital with Denver & you took him to his appts. Anyhow, it was super late at night so after I watched it, I clicked on your channel & kept it in an open tab so I didn't forget to get back to it.(I watch youtube every night after my husband goes to sleep early & I have over 30 tabs open right now. lol) I also subscribed but I didn't want your channel to get lost among the many I am subscribed to. I saw that he is having his heart surgery in your current videos but decided to start at the beginning to catch up & so I can understand everything going on.. but I wanted you to know that I have been praying for him. I'm going to pray for you too. I can't imagine the stress, worry, exhaustion, anxiety and probably guilt you go through daily. By guilt I only mean that you probably want to make his days feeling happy & loved etc. My kids are in their 20's now but I remember always having mom guilt even over silly things. After watching this video I wished I could give you a hug & be there for you. Just know there are people who care & are invested in your story. I cant wait to catch up & I look forward to supporting your channel.💞🙏💞
I am a million tabs open person also 😆 Thank you so much for wanting to know our whole story, this comment made my morning 🥺 Surgery came quick for him ( but after the surgeon saw him it came at THE perfect time ). I wish mom guilt wasn't a thing, it ramped up in me a lot these last few months 🥺
My heart goes out to you and your family. I will pray that God gives you and your husband the strength to carry on. Focus on just loving your special boy, Denver. It’s says a lot about you that as you are going through this difficult journey, you are concerned about others, to me that shows how strong and loving and caring you are. Take it one second at a time and try not to worry about tomorrow, just live in the present. Enjoy and drink in the good over the not so good. You were given this special child for a reason, it may not be apparent now but one day you’ll know. I will hold you and your family and Denver in my prayers. May God be with you as you go through this difficult journey.
❤️❤️❤️🙏🙏🙏
Thank you very much Cindy 🤍 that is incredibly kind ❤️❤️
After watching your More recent videos, I decided to also Watch this one. It brought tears to my eyes, because I myself gave birth to my daughter around the time Denver was Born. Her birth was Kind of traumatizing and I still think of it.
Sending lots of love from Europe ❤️
I’m so sorry you also had a traumatic birth, I know it’s hard and it’s a horrible thing to go through 🥺 happy birthday to your little one 🤍
thank you so much for your sympathy. I really appreciate it. Happy belated birthday to Denver! ❤️
@@JuliaMop-hn6lq thank you so much! 🤍🤍
Sending you BIG HUG from Liverpool in England
Lifting you and your family up in prayer and will continue to do so. May God give you the strength you need for each day and may you be blessed through your struggles.
Thank you so much for yours prayers & kindness, it means so much🤍🤍🤍
My heart goes out to you too. You will find strength from your family and friends and also those who will be there for you medically. I am familiar with this syndrome and know how varied the symptoms and disabilities can be. Denver is such a wonderful name and it appears you have a loving family. Bless you. X
Thank you very much ! 🤍🤍
Sending lots of thoughts and prayers both to you and Denver, from my hometown of Melbourne, Australia 🇦🇺
Denver is such a lovely name for your son. I would often visit Denver, CO, when I lived in Boulder, CO and have always thought it would be a strong name for a little boy to grow big and strong like the mountains. I believe your Denver will be much loved by you and his family, and grow big and strong in his own unique way.
🥹🥹😭😭 I never thought about that before, I love that so much 😭😭 thank you! I hope our little guy grows up to be strong like mountains 🏔️ thank you so much 🥰🤍🤍
Melbourne Australia 🇦🇺 here also, sending love to you and Denver. X
@@brilliantbutblue thank you! 🤍🤍
I’m so sorry for your family. I hope he remains on the less affected side. My prayers go with you all.
Thank you Morgan! We do too! Every heart appointment tells us more about him and how he is doing and those are so helpful to tell us how things are going for him!🤍
I send you prayers for you, your son and your family, you are so brave and I wish you find your way you and your son towards less loneliness and new hopes for an easier life
I knew a grown man that had Marfans syndrome. He was in his late 30s. Every case is so so different and I’m wishing you peace in this time.
Yes I wish that to be Denver so so so much. The neonatal version is more aggressive and the average life expectancy is 16 months , there are kids that are into their teens, so we are hoping we have Denver for as long as possible. Medicine has come such a long way 🤍 thank you very much for your kind words
President Lincoln had Marfan’s, I believe.
@@milankatz9628 I have heard that ! I have also heard that Julius Caesar had it🤍
I'm so sorry that you had to go through all this. I know. My daughter, now 22, was born at home, totally grey, hardly breathing,very floppy, went to the hospital and after 4 weeks we were told she has Prader Willi syndrome. Ifelt like you: overwhelmed, not knowing about the future, a lot of tears and fears. But now, she's doing well, living happily in a home with other prader willi people. So, be of good spirit, keep trusting the Lord, He loves your son so much. And God bless you as a family!
This sounds like my story with Denver, it’s so shocking & I know it’s not what we expected :( I’m sorry our birth experience was similar .. 🤍
I believe there is at-least one other mom in the comments of this video who has a child with prader willi syndrome 🤍 I had never heard of it before that comment, and I know it’s so hard to have a child with low tone & any feeding worries 😔 it makes me so happy to hear she is happy 🤍 thank you so much
My prayers to you and your family and little Denver, in Jesus name.
Thank you very much Terry !!!
Oh dear u are a strong mama it's so hsrd but his lucky to have u... His in our prayers may God him health and strength znd may he be without pain God bless him znd u ❤❤❤❤
Thank you so very much for your prayers 🤍🤍🤍
Don’t google
Talk to your Doctor instead
Take one day at a time
He is yours and he is lucky to have U
❤❤ Try and be happy. Think about yourself. U know u are important 😊
Google can be a blessing & a curse 🤍 thank you for your kind comment, it means so much ❤️
My thoughts and prayers are with you and your family. Stay strong, and God bless.
Thank you so much for your prayers Cheryl 🤍🤍
I am so sorry - birth can be so traumatic - I really hope you get the mental health support you need❤ momma hearts are the strongest things in the world. You will love your son with all your heart and he will love you with all of his.
It hurts to watch how broken i was in this video weeks after this birth :( I have been getting help with our hospitals hospice / respite counselling services and they have been so incredibly helpful 🤍 thank you so much 🤍🤍
I know this clip is 4 months old now, but God will bring you many blessings after the many hardships there is light at the end of the tunnel.
Thank you, I pray for blessings every day ❤
@IsabellaJoy keep making more content as you are called. I felt the spirit move in all your clips. You are a light to others.
@@savedbygracealone316 that means more than you know ! Thank you, I was thinking of making a video this week, I really enjoy & miss it
❤God bless you & your family & baby Denver! ❤
Thank you 🙏 🥰🥰
Thanks for sharing ❤
My mama heart breaks for you and your family. You all will be in my prayers.
Thank you so much 🤍🤍
You prayed people would be nice and look at the comments from all over the world ❤ Denver is absolutely adorable and he looks a lot like his beautyful mama ❤
So many beautiful comments from so many beautiful souls 🤍 mama bear gets protective & the thought of anyone saying mean things about Denver in particular & I put up high walls . But 99% of comments are so kind and sweet to Denver and it so lovely to know people see his beauty and his sweetness & take the time to learn both about him & his condition 🤍🤍 thank you I agree I see myself in him 🥹🥹
I am so sorry. I can't imagine how you are feeling but I hope the best for your son 🙏
Thanks Reni! Big things coming his way soon & we hope it will make his life a lot better 🤍
@@isabellajoyy I keep him in my prayers
Abraham Lincoln had Marfans and lived a pretty extraordinary life, and so will Denver.❤
I love that! I know Denver will live such an amazing & loved life, he shows me everyday 🥹🤍
Wow girl. I'm so sorry. Our due dates were very close, so I started following you. I had c section with first and was in nicu for a short time, and the separation is unbearable. I'm sorry you're going through this especially without any preparation.
Nicu was incredibly hard, but we are now home with him on oxygen . We have some big appointments tomorrow for his heart & lungs so we are hopeful for good news ❤️ thanks for the follow! It means a lot to me. I’m sorry you had to go through some separation also. Hope you are recovering well and baby is doing good ❤️
@@isabellajoyy hoping for the best for you guys. Yes just had my #3 about a month ago and so far baby boy is healthy and Im recovering!
@@sarahmarciniak8160 awesome to hear! Congrats on your birth ❤️
Lifting Denver, you and your family in prayer. He is blessed that you are his mommy.
@@claudiakleid5637 thank you so much for your prayers & kind words ❤️❤️
I'm so very sorry to hear this. Turn to God.... He can get you thru this. I will pray for you and your husband.
Thank you so very much for your prayers 🤍🤍
I’m sorry sweetheart you had to go through this. Stay close to God, he will comfort you and family. Life isn’t fair, but this is not the end of life. I’m sorry your lonely, much love and prayers for your son🙏🏻❤️
Thank you Kathy for your kind words & prayers ! 🤍🤍🤍
I know this is apropos of nothing, but you have beautiful hair!! I am envious!
Thank you very much !! 🥰🥰
Enjoy him for every moment you have him one of my identical twins had 4 major heart problems that were a 1 in a billion combination sadly we lost Aron at 6 days old enjoy him doctors are not always right
Hi Robin, i'm so incredibly sorry for your loss. ❤ Sending my most heartfelt sympathy to you and your family
Prayers for sweet Denver….I am thinking about your family.
Thank you Stephanie ❤️❤️
Praying for Denver and your whole family.
Good for you for doing such a painful thing to help others, I will be hoping for the best for you and your family
Thank you very much 🤍
God works in mysterious ways... God bless you all.
Come to find out he doesn’t have a deformity he is absolutely perfect! ❤
He truly is 🤍
sending so much love to you, sweet person
Thank you very much 💖💖
I Wish you strengh and love to go through this and give love to your baby. I see more problems with pregnancy and babies since those called “ vaccines “ Arn M , did you took vaccines?
I didn’t get any vaccines while pregnant and will not. I haven’t been vaccinated since before I was pregnant with Denver. But I will not be getting any vaccines while still wanting to have children, just don’t ever want that to be a what if reason for anything to go wrong
I had a co worker with Marfan's. He has since passed away, but he lived into his 60's I believe. I know newborn and adult Marfans are different, but there's always hope. ❤❤❤
Yes they are different :( but medicine has came a long way! I’m actually making a video on Denver’s condition & how it affects him for Friday 🤍🤍🤍 thank you so much for watching and being kind to Denver and his story 🤍🤍☺️
Isabella you are a special mother. You only are concerned for Denver.
Thank you so much Carol 🤎🤎
Stay strong ❤
What a very hard hard thing. I had never heard of it before. I pray he ends up one of the lucky ones ❤️
Thank you very much!! We do also! He has defied so much & medicine has came so far so we truly never know! 🥹🤍
I just found your channel and my heart goes out to you and your family! Little Denver is so precious! I'm sending you prayers and love. I subscribe to 2 other channels that both have a child with a disability. It might make you feel a little better watching them. One is Stephanie George and the other is Freya's Lucky Arm. They both are amazing channels. I hope they help you!
I have never heard of freya’s lucky arm! I will go follow thank you very much 🤍 :)
Thank you for sharing your story! There is a woman on UA-cam, Leighannsays, who has a young child with a rare genetic disorder. It isn’t the same condition as your son, but it may be good to follow her channel or even reach out to Leighann for friendship. Wishing nothing but the best for you, your son, and the rest of your family ❤
I actually followed leighannsays probably 10 years ago for make up. I watched her video on her daughter and cried because I felt there were so many similarities. I never thought to reach out, maybe I’ll be brace and give it a try! Thank you 🥹🥹
God gave you a gift of a life time he sent you one of his specific 😇 angels because he knew you would keep him safe and love him if you have a small bible or new testament put it close to him so he will be covered by God's word I'm gonna put your family on prayer lists because god has your beautiful son covered and you all need strength to.
Thank you so incredibly much for your prayers! He is a living miracle and has already defied so much amongst all he is going through. 🤍🤍🤍
The print is it the 8th open it for the ginger and garlic butter in my room now and again in January to the height difference is the postal code 20 Godwin I will ring her later ookklllkkkkkl
The physical thing, the book, the bible is not a magic talisman. The words are probably something different
Hi fellow Canadian ❤, im in Ottawa. I just subbed on your other post and then saw this one. Im so sorry youve been dealt with such a difficult birth story, /child disabilty. Have u app,ied for Child Tax Credit thru CPP? Also provincial support disability? Do you have March of Dimes or a similar program? Handicapped Allowance, provincial?
I had one daughter born with rare genetic disability dx age 4, January 1990. Now this daughter has 4 kids with their autism, Adhd, and 2 of them have a rare genetic disease dx after the 4th child.
Hi fellow Canadian ! ❤️Yes I applied last week for child tax credit, I believe the strike will slow that down but still glad we have that here 🤍 and then back in February I applied for FSCD ( family support for child with disabilities ) here in Alberta. 18 month wait list to talk to a social worker to help get support, and they don’t back date :( we have a local organization that heard about Denver and they have helped pay for the amount not covered by insurance , such a blessing !!
Are your grandchildren well ? How is your daughter today. I know that must have been hard and continue to be hard for your family. The unexpected shakes you off your feet and it can be so hard to get your footing back. A path hard to explain to others unless they have went down in. I’m sorry we have walked this similar path together, but it brings me joy knowing there are amazing moms out there that are just like us a with lovely stories of their children 🤍
I'm praying for you and your famiĺy
Thank you very much 💖
I love Denver’s name!
Thank you!! I loved it since we were being our first and I was so happy when I could use it with Denver ! It suits him 🥰
There's another channel on UA-cam i think its called Our lives, our reason, our sanity,but they had a daughter with a chronic illness. Maybe someone you could connect with, they also live in Canada. Im so sorry you and your baby have to go through this😞
Thank you! I had never heard of her and I followed her & saved some of her older videos to watch, I appreciate the recommendation 🤍
I will be praying for your baby & family. ❤️🤗🙏
Thank you Tammy 💖💖
All my love and prayers ❤
Thank you very much 🤍🤍
🥰 prayers for you and your family. Sweet boy ❤ my heart is with all of you.
Thank you so much 🤍🤍
@@isabellajoyy you’re welcome 🥰🥰🥰
Sending you lots of love and prayers ❤
Thank you! 🤍
I'm so sorry. I will be keeping your family in my thoughts 💗💗
Thank you very much 💖💖
Sending Love 💙
Thank you Karina 🤍🤍
Sending love
Thank you so much ❤️
I also had a normal pregnancy except for the last bit where he was not feeling well and they wanted him
Out in week 36+0 ca . Today we have found out he has a mild case of goldenhar syndrome and also duanes syndrome . I am still not sure exactly What it Will bring but now i am atleast more calm and have accepted that he might have and have some issues . And whatever we Will deal with them
❤and help him to the best of our ability
Hello love ! It’s definitely hard to know our children will need specialized care to some capacity to make it easier on them or in some cases less painful for them to do things others do so easily 😔 I hope he is doing well, how old is he now ? 🤍🤍
Ohhh mama bless your little heart.
Thank you 🤍 he goes for surgery in 9 days and it will help him so much 💕
SENDING LOVE AND STRENGTH X
Thanks Alison ❤️
Try to find a support group, even if its through f b or online. My sisters youngest daughter passed and support has helped. You need moms dealing with these type of children, relatives are too close.
Thankfully I found an amazing support group on Facebook with around 100 parents with kids who have this condition,.because it’s a rarer more aggressive form of Marfan syndrome, it often gets put in the same category , but truly think the support in that group got Denver to where he is today. I actually met up with a mom from that group and got to meet her boy and I can’t begin to explain how helpful that was. I’m so sorry for your sisters loss, I know my sister has been a big support for me on days I just want to break so it’s nice to know your sister has you in her corner 🤎🤎
Biggest hugs in the world ❤❤❤
Thank you!! 🤍
🙏🏻🙏🏻🙏🏻to you, mommy.
Thank you 💖💖💖
This can happen to anyone, and it does happen to a lot of people.
You are right, it’s a reality for many parents. Its not something you think will happen to you until it does , then it rocks the ground beneath you. The town I live there is only one other child with special needs ( from what our public health tells me ) so locally I don’t know anyone else , but I’ve been connected to play groups now in the city to meet up with other parents in real life so I can meet friends that know the path we are on 🤍
I'm sorry girlie I helped a friend years ago with her little one at one she was so tiny little hands and the tiniest feet had had a cleft palate operated on little sweet curls and was just sitting what a love had a feeding button ad,again she did not have an appetite her parents never got a diagnosis she did good we played we walked she left at 3xto go to a little special school by day she was crawling then had a few teeth and was eating a little a smile that was so sweet and such love I felt missed her so but they had more knowledge its a sadness and life throws things at you you are such a brave girl and doing so good wish I could help sending you lots of strength
You listening & learning about Denver & his condition is helping 🤍 thank you for taking the time to write such a kind message ! Denver will get his feeding button eventually and I really hope it helps him 💖
Aww you poor lady be strong n know you can reach out xx
Thank you, that is so kind 🤍🤍
7/24/23: 🙏I came across this post of your's after I asked so don't bother answering.....Id like to introduce to Lacey Grace channel, with Spina-bifada and her pre-birth surgery while in the Womb, she's now 3 and walking, lots of love and innovation on her parents part🙏❤
WOW, 🙏 he loves BATHS, WATER is soothing to Denver, Comfortable to his skin, bones, no pressure, weightlessness, strengthen his wrists and ankles and feet....
Patty Sue, Maryland
Have never heard of that channel but I will go searching! Thank you very much! We are on the wait list for water therapy and can’t wait to do that with Denver 🤍🤍 I think it will feel so good 🤍
@@isabellajoyy 🙏Happy to hear water therapy for Denver, strengthen movement in wrists legs, ankles, hope you'll be in that bathing suit in the pool with him, as a mother's and father's Love & Trust, can see the change in Denver's strength and ability🙏. This will be exciting to see Denver's Joy and Progress along with Your son..Family event....The simple kicking of his feet and hands moving back in forth in water-strengthen muscles and ligaments🙏💪
Patty Sue, Maryland
@@pattysuechandler-lindquist3159 🤍🤍 thank you 🤍🤍🤍
Angela J. Sounds like my story 42 years ago.