My child passed on 2 years ago, actually it would have been his 2nd year birthday on the 24th of March. He had Trisomy 13 and only lived for 3 months. 😢😢😢the worst pain ever😢😢
My gosh, what a beautiful video. And what a beautiful and special boy you have. God had a plan when he sent your special child into your family's life.
For whatever reason this video was recommended. I don't have children, but the way this father describes his child and the love he has for him moved me deeply. So beautiful.
Everything is so hard for these kids and it breaks my heart. I’d do anything to make things easier for them. Just to have a little more control of their bodies. It amazes me how much joy they can feel. God bless this gorgeous little pumpkin. He is just precious.
Thank you for your comment! It was my pleasure to create this video. I hope you enjoyed watching it. I'm so glad to hear about your daughter! I wish her and your whole family continued health and happiness long into the future. I feel the same way about my son... he is such a wonderful blessing. Truly the light of our lives. Thank you again
Thank you for making this video. My husband and I recently learned that our unborn son likely has trisomy 18. I hope we get to spend time with him like you have with your child.
I sincerely hope that you get to spend some time with him. It is a very difficult thing to know that your child will struggle for life and in life more than you initially anticipated. Any moments you have with him will be the most precious of your life, and of his. I hope they are many, and I hope they are long.
@@mcgheebentle1958 Sadly, our son died at 15 weeks gestation. We named him Charles Simeon. I am honored that I got to be the one to carry him, to nurture him, and to him and keep him warm and safe throughout his life here. We cherished the time we had with him, now he is asleep in Christ. We are thankful for all of the care and support we received from our friends, family, church, coworkers, nurses, and others in the pro-life community. We look forward to meeting our son again at the resurrection on the last day. Luke 2:22-32, Matthew 19:14, Romans 14:8, John 10:11-30, 1 Thessalonians 4:13-18
💙✝️💙 Last new years eve I heard a sermon on Simeon, how he was able to go in peace after seeing the Christ child. How beautiful that you named your son after him! Thank you for your testimony.....
💜Thank you for this beautiful video & sharing your beautiful son with us. My heart is full because I know a very special little girl with Trisomy 13 & she is just the most amazing soul. I’m crying happy tears because this video has confirmed how I feel about her. May God bless you & your family always💜
I have a 35 year old daughter with partial trisomy 13. Not as bad but still considered not compatible with life. My daughter however, is mostly normal and has college degrees. She is my miracle child.
My son has Trisomy 21 (Downs Syndrome) and he is 34 years old. I remember when he was born by C-section and I was unable to see him until two days later. He wasn't brought to my room so I had to heal enough to go to the NICU. I didn't recognize him and I began to cry thinking they had given me the wrong baby. He had changed because of jaundice and I just wasn't ready for what I saw. The next day the doctor came to my room and sat beside my bed and asked if I wanted to put him in an institution. I still cry when I tell this story. After crying for a couple of minutes, I told him no and that I would be taking him home. You see it didn't matter if he had no legs, arms, and an eye in the middle of his head like a cyclops, he is mine. I consider him a Blessing no matter what and there have been many obstacles. We just maneuver through them and keep going. I don't even know what I would do without him. They are all Blessings no matter what.
I love this. My daughter is in here too. I hope you don’t mind. But I shared this video on my Instagram to bring awareness to trisomy 13🙏🏼🙏🏼 I can watch this video all day. God bless.
thank you so much. I put a lot of work & love into this video. Very glad that you enjoyed it :) I rewatched it again tonight and had a little cry... reminded me to cuddle my son a little tighter and appreciate him a little more. Thank you for contributing to that reminder
My son had trisomy 13 and holoprosencephaly he lived 2 days he was born at 28 weeks he had a cleft lip he had parts of his brain missing he only had the back part if his brain left. My baby was ill I wished he had more time then just 2 days .. 😪 we miss him so much he will turn 3 years old in January.
Hi Samuel! Another beautifully done video. I look forward to getting a notification that you have uploaded a new video. Lyly is so precious, and so beautiful. He has a smile that lights up a room, and those amazing eyelashes are gorgeous. I was so surprised to see the young girl in your video that appeared to be maybe 5, or 6 years old. That was so encouraging to see. Lyly seems so healthy, and happy, and I pray each and every day that he lives and thrives for many years to come. I just love him so much! Your film also touched on the feelings that I get when I see Lyly, and it is that precious innocence, and complete happiness that makes my day so much happier! Please hug Lyly for me, and many blessings to you and your wife...
:)))) Thank youuuu!! You mentioned a girl aged 5-6 years old. I'm not quite sure which one you mean, as there are so many children featured in this video! My daughter is included in this video too! She's the little 9 month-old girl sitting next to him in the hospital, as well as the one next to him in the stroller (walking through the park). Aaaand she's the crying baby when I say "new born babies, puppies and kittens" ... :) Thank you as always for your absolutely lovely comment. I appreciate them all so very much.
I don't know man, I always feel like when somebody speaks positively about as these kind of situation he is trying to hide the reality and convince himself that it's not that bad. I feel extremely sorry for your trisomy child, and you, and I really hope he is not suffering. I feel like it's egoistic from a parent point of view to let this kind of child be born if there was the possibility not to start that pitiful life at all. If he's not suffering it's fine, the life is worth living, if he is suffering then a loving parent would not make him come to life. Life is not sacred, it's basic biology, so there's no need to let people suffer just because of religion. All life matters, in fact the decision to spare someone the suffering he would endure otherwise (I'm talking about euthanasia and abor.tion) is a great show of love and compassion towards you kind. If you love life, and living creatures, you'd do anything to spare them from suffering. I hope you and your son are ok and that he is able to enjoy his kind of life.
I agree with the essence of what you've said; a life full of suffering is not a life worth living. Thankfully my son's life is about 95% pain free as far as I can tell. He seems comfortable and does not exhibit any signs of being in pain.. smiles when cuddled, tickled, talked to, etc... only goes to hospital for checkups and spends 99% of his time at home with his family. and just a note that we didnt know of his condition until after he was born. And another note that I am not religious at all. I am in fact an atheist. Nothing I've done or believe regarding my son has any religious justification. "I always feel like when somebody speaks positively about as these kind of situation he is trying to hide the reality and convince himself that it's not that bad" I know its just your feeling, so I cant argue with how you feel... but I would suggest perhaps placing less credence in this feeling, as I dont think it will serve you well. I am well aware of the tragedy of his/my/our situation.. this video is just one part of my journey telling our story; it is not the whole story by any stretch. You can check out some of my other videos if you want to know how I feel about the sadder side of trisomy. We are a very happy family, and, after 4 years of life with our son (and now 2.5yr old daughter) we have zero regrets about any intervention we've taken in our son's life to help him survive. Yes, we have all experienced trauma of varying degrees over the past 4 years, and yes, I wish more than anything else that my son was a healthy, normal little boy... it is a tragedy the likes of which I hope i never experience again... but there are indeed many many positives to speak about, and, when the mood strikes me, I will speak about them.. and it will be without any attempt (conscious or otherwise) to hide from, ignore, or veil the negatives.
@@SamuelT13 I'm with you bro. If you didn't know before birth there was nothing you could do, and you being supportive and trying to make his life the best possible is admirable. You really made me rethink some of my believes on this topic, and it's very important for me as I'll be a doctor in one year, and I have to know. I hope your family and you will do well
I had a child with trisomy 13 and there was nothing wonderful about it. Harsh reality. It’s incompatible with life. Some of the facial anomalies are absolutely horrific. Mine had a cleft palate so I was lucky there. His other anomalies included an incomplete skull, heart & lung anomalies to name a few. The drs concluded that his brain stem was either nonexistent or so small they just couldn’t find it. They are profoundly mentally retarded. I know that’s a word that frowned upon
Thats why I made this video.. actually it was my first video on the subject: "The Brutal Reality of Trisomy 13" ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-RKCJrqFQ7IQ.html&lc=UgwOmqdovnrU2TlZ7CN4AaABAg
I agree with you on this. Most children with trisomy 13 die in utero or shortly after birth. The ones that don't suffer from horrible health conditions and facial anomalies like you stated. There's nothing wonderful about that. I think that was a poor choice for a title. Maybe if they had made the title more about the life of some children and not about trisomy 13 in general it would have been better. I feel like this gives people a false sense of hope that are pregnant with a child with trisomy 13 and I think that's cruel too do. I'm sure they meant well though with the video and title. I'm so sorry for what you went through with your child. I could not imagine how difficult it would be finding out the life you created and desperately wanted had this. I have children myself and my youngest is special needs, dealing with that was hard enough but to have the outcome you did would be so devastating. I hope that you have been able to heal from this and are in a better place mentally now. I'm not sure if they use mentally retarded as a diagnosis anymore but I think it's mostly frowned upon when used in a negative sense. I have a younger sister who suffered brain damage when she was 2 yrs old from a febrile seizure that doctors were unable to stop for 45 minutes. She was later diagnosed with mild mental retardation due to brain damage I believe in the early 2000s when she started school and they saw how much trouble she had. I believe that's still her diagnosis but I could be wrong. Personally I don't see a problem with using the word in a medical sense. The word itself isn't negative, people made it negative by using it in a derogatory way.
@@Xessa82 "I feel like this gives people a false sense of hope that are pregnant with a child with trisomy 13 and I think that's cruel too do. " If people merely read the title/thumbnail and dont actually watch the video, I dont think I can be blamed for their being misled. In the introduction (first 20 sec) of the video, I explained quite clearly that Trisomy 13 was a horrific condition (i even said "I previously called it a death sentence").. and that *this particular video* is about a few of the more positive elements. at no point did I try to paint trisomy 13 as being a wholly positive or "wonderful" condition.. I merely attempted to share a couple of the positive parts (as I saw/see them), rather than only showing the negatives (90% of the content on my channel & on the internet about the condition is negative) perhaps I could have made the title "the wonderful side of trisomy 13", rather than "reality" however, incidentally.. the vid was originally meant as a counter (or episode 2?) of an earlier video of mine called "the BRUTAL reality of trisomy 13", so the title fit for me. Though I can understand how it may be misleading when taken in a vacuum. Anyway. appreciate the comment, but found it a little harsh regarding the point about giving a false sense of hope.
What a beautiful way to appreciate your beautiful son! He is so full of love and smiles! No wonder -- he has a Daddy and Mommy who love him so much! God bless you and your very special boy!
Until now I thought that I would not raise a child in case the fetus shows any trisomy marks before birth. But after watching this video I have changed my mind.. it's a blessing and a wonderful opportunity to live a life that only a few can experience. Thank you for sharing!
This truly is one of the warmest, truest, most uplifting things I have ever watched! You have managed to put into words exactly that what draws me to these children. Due to autism and complex PTSD I rarely have peace of mind or body. Watching Elijah, and all the others like him, solves that, even if it is for just a moment. And your insight about him never doing anything wrong and thus bringing us closer to God, is so true and new (to me)! Thank you. As I said in another reply recently: I truly hope and pray that you will continue to feel and think about Elijah in this way, despite all the pain, for all the days this angel is given to you. 💙🙏
Thank you so much for making this wonderful video, my sister have this trisomy 13. As you mentioned, my sister always brighten our darkest days, she is a pure soul, kind hearted, she always enjoy in her little world, she finds happiness in little things, she loves me so much, she loves playing with me, she loves when I stroke her hair, I'm far away from her I came to city for my studies, I always see her on video calls, I really love her and miss her so much. She used to wait for me every day when I went to school in my town, she is always excited to see me when I return home she used to signal me to come closer and always gave me kiss. She is such a angel and I'm so lucky to have her as my sister.
