story of my son's birth & his unexpected disability 

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.

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❤ 👶 👨‍🍼

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.

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.

RU-vid 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. ❤

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 ♥️

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❤️

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 🤗

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!

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

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!

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 .

My heart & prayers are with you & your family. Thank you for the strength & courage to make this video creating a loving, caring community. ❤️🙏❤️

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.

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.

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❤

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 💖

Sending prayers, hugs and good vibes for Denver (what a great name!), you and your family. ❤

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.

Mightily praying and sending so much love. Thank you for sharing.

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 ❤

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. 🙏🙏🙏🙏🙏🙏 ❤❤❤❤❤❤❤❤🙏🙏🙏🙏🙏

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

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. ❤️❤️

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!

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.💞🙏💞

Thank you so much for sharing the Story of your beautiful son.

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

Honey you will never be alone. Your RU-vid 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.

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❤❤❤

I’m so sorry for your family. I hope he remains on the less affected side. My prayers go with you all.

My thoughts and prayers are with you and your family. Stay strong, and God bless.

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

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!

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. ❤️❤️❤️🙏🙏🙏

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.

Good for you for doing such a painful thing to help others, I will be hoping for the best for you and your family

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 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….

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.🙏🙏🙏🙏🙏🙏

Praying for Denver and your whole family.

Sending you BIG HUG from Liverpool in England

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.

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 ❤️

sending so much love to you, sweet person

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🙏🏻❤️

❤God bless you & your family & baby Denver! ❤

I am so sorry. I can't imagine how you are feeling but I hope the best for your son 🙏

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.❤

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 ❤❤❤❤

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.

What a very hard hard thing. I had never heard of it before. I pray he ends up one of the lucky ones ❤️

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!

My mama heart breaks for you and your family. You all will be in my prayers.

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 know this is apropos of nothing, but you have beautiful hair!! I am envious!

My prayers to you and your family and little Denver, in Jesus name.

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 ❤

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.

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.

Thanks for sharing ❤

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

Prayers for sweet Denver….I am thinking about your family.

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.

Thank you for sharing your story! There is a woman on RU-vid, 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 ❤

Sending you lots of love and prayers ❤

I will be praying for your baby & family. ❤️🤗🙏

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.

Stay strong ❤

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. ❤❤❤

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 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.

I'm so sorry. I will be keeping your family in my thoughts 💗💗

🥰 prayers for you and your family. Sweet boy ❤ my heart is with all of you.

Isabella you are a special mother. You only are concerned for Denver.

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

All my love and 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 😊

Abraham Lincoln had Marfans and lived a pretty extraordinary life, and so will Denver.❤

SENDING LOVE AND STRENGTH X

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.

🙏🏻🙏🏻🙏🏻to you, mommy.

I'm praying for you and your famiĺy

Ohhh mama bless your little heart.

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

Come to find out he doesn’t have a deformity he is absolutely perfect! ❤

Aww you poor lady be strong n know you can reach out xx

There's another channel on RU-vid 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😞

I love Denver’s name!

Sending Love 💙

Angela J. Sounds like my story 42 years ago.

Sending love

Biggest hugs in the world ❤❤❤

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

God works in mysterious ways... God bless you all.

This can happen to anyone, and it does happen to a lot of people.

Prayer for y'all.

Just found 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.

Are there support groups out there for parents who have children with serious medical conditions? Even an online group would be beneficial