12 days ago

2 posts in this topic

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 

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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

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