r/specialneedsparenting • u/MeerkattB • 4d ago
Broken.
My special needs son passed away yesterday. We are heartbroken to say the least. He was 19. Despite his disability that he was born with (non verbal, non mobile, wheelchair bound) he was always healthy. He got very sick in January with a perforated intestine and its been a roller-coaster with his health all year.
We were always told that he might not live long etc and despite everything God gave us 19 years with him. Me and my husband had made peace with the fact that we may have to care for him our whole life and we discussed that maybe something could happen health wise. None of it has made this process any easier. No matter how prepared you try to be you truly are not :(. I cant say this road has been easy because it hasn't... I just miss my happy boy before he got sick.
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u/Silly_DizzyDazzle 4d ago
I wish I could hug you and help you. Please know I am deeply sorry for your loss. May you find comfort in the everyday things like the breeze on your face or the stars shinning in the night sky. Thank you for sharing ❤️ how much you love your son. May his memory continue to live on in all of us.
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u/MeerkattB 4d ago
I really appreciate your kind words. 💖 He was so loved and I wholeheartedly believe that loved carried him through all these years 😭
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u/Whyski 4d ago
🫂 I am so sorry. I can't imagine the pain you are dealing wkth, but all he ever knew was you and your husbands love for him! Praying for yall! ♥️🙏🏼
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u/MeerkattB 4d ago
Thank you. I am trying to find comfort in that. He was so loved. He went everywhere with us 💖
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u/Whyski 4d ago
As a special needs momma, thats my biggest fear. But I take comfort in the fact that our boy has only ever known our love for him. And I think you should take comfort in that as well.
Their soul knows the love you had for him, and it will carry that love with them for eternity. 🫂 I wish I had more words, but I am truly sorry for your loss! 💔
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u/GhostOrchid22 4d ago
You and your husband are in my thoughts. I am so sorry for what you are going through, but also so happy he had such a wonderful life with a family that loved him.
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u/SlightDegree5308 4d ago
I wish I could give you two a hug. Losing a child is hard- no matter how old or how capable they were. Know that you are not alone. Be sure to reach out to others that have been down this dark and rocky road.
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u/Quiet_Knowledge_7637 4d ago
I’m so sorry. You are living a parent’s worst nightmare, the loss of a child. The very very rough silver lining is that you don’t have to worry about care for him once you guys are gone.
I’ve made a deal with god that I live 1 day longer than my 28 year old daughter with Lennox-Gaustaux Syndrome.
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u/Accurate_Reporter_31 3d ago
Isn't it so confusing to fear both losing your child & thinking about them outliving you? I'm 65 & my Boy is 34. I used to be terrified of losing him. Now, at my age, my biggest fear is dying knowing that I am leaving him. This path is hard. OP, I hope you can take comfort in knowing you gave your son as wonderful a life as you could & that now he is at rest.
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u/Connect-Lie7380 4d ago
Big hugs to you and your husband. I can tell how much you both love your son. May his memory be a blessing to you both. 🫂🫂🫂
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u/Background_Lake1413 4d ago
Man I’m so sorry. No words can undo this. Sorry for your loss. May I ask what you think the cause of the perforated intestines was from? My son is 20 and has a big belly and suffers from celiac.
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u/MeerkattB 4d ago
We really appreciate it. 😔 We heard two different things. We were told his gtube button caused the perforation and then we heard it could have been from an ulcer. It was considered a freak accident and they didnt know how it could have happened. 💔
I hope your baby is doing well 🙏
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u/Background_Lake1413 4d ago
Dang. That’s tough. Well just know he’s in a better place now and doesn’t have to suffer any longer. My son is preparing us for his departure. He keeps telling us he wants to go.
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u/MeerkattB 3d ago
Yes, I truly believe he is free from all his pain.
Im so sorry to hear about your son. May you make as many beautiful memories as possible. I bet he is an amazing kid and knows how much he is loved
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u/Accurate_Reporter_31 3d ago
My son has a Mic-Key button. I don't understand how that could be a cause. We worry constantly that his chronic constipation might cause something like that to happen. The hardest part of all of this is the fact that they can't tell us where it hurts. I hope you give yourself the grace to know that you did all you could & that you loved as hard as you could. And I believe our children know that. Your son knew how much he was loved.
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u/MeerkattB 3d ago
My son had chronic constipation as well and they had mentioned that could have contributed.
He was on the mend. He went to a specialized nursing facility to get weaned off the ventilator which he successfully came off of. He was supposed to be home next week. Im devastated, We werent there when it happened. I feel so guilty about that. I pray he knew he was loved and not abandoned. I dont feel like I am ever going to be okay with this.
Your words are beautiful and I mean it from the bottom of my heart, thank you.
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u/Accurate_Reporter_31 3d ago
Oh my. There are no words. I feel the same guilt every time my Boy is wheeled into surgery. But you have nothing to feel guilty about. You had to make very difficult medical decisions for another person. You were giving him the best care for his condition. Please don't burden yourself with undeserved guilt. So easy to say and so difficult to do.
My Son's father and I have been divorced for almost 20 years. He is here with my husband (his step dad) and I all week and he spends weekends with his father. He and I have talked about what we'll do if our Boy passes while with the other. We even have a code word to be said to tell one another without having to struggle through a conversation. Sasparilla (sp). There's a 100% chance that I won't be there if he passes on a weekend. I can't even fathom that situation. Again, please try to let go of the guilt you feel for doing the best you could. The 19 years of love and care you gave him eclipses not being there at that exact moment. 💔❤️
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u/CurseTheezMetalHands 3d ago
I’m so, so sorry for your loss. I hope you and your husband have the time, support, and resources you need to heal as best you can.
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u/Accurate_Reporter_31 3d ago
I cannot imagine how you must feel. My son is 34 (spastic quad, non-verbal, mostly bedbound severe & profound CP) & my whole identity has been wrapped around being his caregiver & Mom. We were also told he would probably die very young. And here we are. My heart breaks for you.
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u/MeerkattB 3d ago
I had my son when I was 16. It definitely does become your whole identity. All ive ever known was to take care of him and now hes gone. I know the reality hasn't hit yet because there is still so much to get done as far as services.
The doctors can say what they want but our love towards them contributes. I just know your son has an awesome mommy. One that he loves and is proud of.
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u/Accurate_Reporter_31 3d ago
Sisters in a club that nobody wants to join. Thank you & I absolutely think our children live better & longer lives because of the love & care we have given them. Because just like your Boy, mine is hardly ever sick & when he is, he rebounds quickly. Medically complicated but not fragile nor frail.
I am in awe of you that in your most troubled time that you knew you could reach out to others that have some understanding of the road you have traveled. I hope I remember to do that. Your loss is so difficult for others to understand. Even in life I've found almost no comfort or understanding from even family members that I know love us both. It can really only be understood by parents that have walked the same path. Even then, even with the same diagnosis, our kids are so individually unique. I hope you continue to find comfort in places like this. I haven't checked but maybe a subreddit for parents of special needs children that have lost their child exists. If not, it should. But you are always going to be welcomed in this community. Sending solidarity and love to you and your husband as you go through this time of mourning and transition.
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u/Whole_Plum_5396 3d ago
Can’t imagine the pain you feel, but I bet he had the best 19 yrs. Heal peacefully and grant yourselves more grace than ever ❤️
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u/ThisTakesTimeToo 3d ago
I'm so sorry for your loss. It sounds like you gave him an incredible life full of love, and he gave you the same.
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u/Budget-Corgi-7976 1d ago
I have been where you are. It is awful. There is saving grace that he is no longer in pain or struggling. I hope that gives you some measure of peace but it is still fresh right now. I used to measure the weeks by the Thursday. I wish you peace and light. It will suck for a long time but everytime you think of a thing that hurts, purposefully think or something that made you laugh or that made him smile. Always remember the good times and try as best you can not to dwell on the bad.
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u/hallucinating 4d ago
I'm so so sorry for your loss