Jump to content
Online Grief Support, Help for Coping with Loss | Beyond Indigo Forums
  • Announcements

    • ModKonnie

      Advertisements   09/05/2017

      Hi all,  I'm sure you've noticed some changes in the forums. We've again had to do some updates, so that's why things may look a little different. Nothing major should have changed.  Also, we are going to start adding advertisements sensitive to our community on the boards. This is something we are experimenting with, and we will certainly make sure they are in the best interests of everyone. We want to make sure our forums continue to stay accessible and cost free to all of our members, and this is a way to ensure this.  If you have any questions or comments, please feel free to privately message me or email me at Konnie@beyondindigo.com.  As always, we will be here with you, ModKonnie

Recommended Posts

I've never done this before so please do not judge.  

our wonderful son, jacob passed into heaven on 5 may 2017 at 1215pm. i took him to the hospital the 25-just happens to be his birthday. 

one month ago today was his surgery day. perhaps thats why this morning i was having a hard time even getting out of bed. he has been tube fed exclusively for a year exact but only the GJ was not working as the J was too long and kept clogging or coming back up into the stomach, making him extremely sick. so the best option was to split the G and J permanently as we were going to children s every 2-3 weeks for a replacement surgery needing sedation of course. 

he has gastroparesis, autism and kidney disease. i pulled him from the school setting 2 years ago to home school him, due to the extensive appts and hospital visits, not to mention being so sick the school couldn't have him getting worse or possible spreading (throwing up, diarrhea). he had been doing so much better homeschooling, even mentioning it constantly how happy he was doing work at home instead. 

he was also newly dialysis dependent as his kidneys were in failure mode stage 5 Jan 2017. he understands dialysis, even though he was worn out and exhausted afterwards; it worked and he loved that i did it myself at home. 

im trying to find groups by our home but its difficult to find places. i can barely walk into the house without help. i dont want to move as this was his favorite place weve lived. hubby a truck driver and id really like to go on the road with him but then id have to pack everything into a storage area and only be able to visit Jacob when we drove thru- about once a month. his company doesnt allow riders, so hed have to change companies again. they are wiling to switch him to day driver-home each night. he doesnt want to leave me alone at night. i have people to visit during the daytime. plus i have years of scrapbooking id really love to catch up on. 

id love to share more or hear others stories. God bless 

Share this post


Link to post
Share on other sites

mamatink7 I have already replied to you on another post asking if you would like to join us on Loss of an adult child thread but I would like to also comment on your post if that is ok. Your jacob sounds like he had so many problems to cope with medically and you must have been so busy helping him and getting him to hospital appointments etc, now life probably feels very empty. You made his life so happy by being involved in caring for him and doing homeschool too which you said he loved, so Jacob was lucky to have the best Mom. No need to make snap decisions yet on whether to go on the road with your hubby or not. Jacob is with you all the time in your heart and next to you even if you cannot see him for now just remember that, and he would want you to do what makes you and his dad happy, to be able to thrive despite his loss. I am glad you have visitors to be there for you that is important and we would be glad to hear more about you and your family, there is no judgements as we are all in the same boat together. take care

Share this post


Link to post
Share on other sites
Mike P   

Marnatink7, I'm so sorry to read about your son! Wow! You've been through so much. Our thoughts and prayers are with you. Take your time and make decisions and advancement when you are ready. I hope your husband will be able to find a day-driver job soon as possible. It will be very helpful for you to have him there with you at night. God bless you. We are here for you!

Share this post


Link to post
Share on other sites
Mike P   

Just a suggestion: You mentioned about moving out of the house. You may consider not making any big decisions other than your husband finding work locally for six months to a year or so. (Just a suggested time line) Take time to get more used to what has happened and try not to make any quick decisions unless you absolutely have to. Your whole world has been shattered, and it is going to take some time to put the pieces back together in a way that makes sense. Take your time doing it and give it a lot of thought.

This is just a suggestion, it is your decision.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×