Grief / Grieving in having and then losing a child with SZ

[Mojoclay]

Hello friends. Some of you may remember me, some are new but I say Hello and you are safe here to learn and hopefully get comfort. Its been since June 2020 that I posted. Want to THANK you all who expressed their wisdom, kindness and care for me as a parent during my struggles with my sweet son during his illness.

I wasn’t able to get on this form after his passing in June at the age of 24 but I decided to today. I read one mothers grief in dealing with this illness and which would be better… " a death or walking and living with this illness. I have gone through both.

I have no answers for us as caregivers or to fathers & mothers… as both bring on different types of grief… One is miss the child you once had and seeing ( as they are present in this life on earth ) turn into someone you can’t find anymore… anxiety, fear, omg… the list goes on… With a sz child you once knew as a healthy , happy person before it HITS!
The other if they do pass away… Is very different… You tend to FORGET about the illness and go back to the earlier times… Thats why I decide to come back to the form to remember that this illness killed him and MTHFR needs to be addressed stronger from the medical field.
The Gene of MTHFR is a killer in many ways… Clotting factors ( was my sons killer) early cancer, and of COURSE psych issues.

I came back to this forum to REMEMBER that this illness was his killer… He was well medicated and doing very well in life ( with a lot of work). … WE had hope !!! thats what saved me… HOPE for the future for him …HOPE .

You must have hope but if this illness is not being researched more and MTHFR isn’t addressed more then that is a huge neglect of the medical system and the Drs. taking care of our loved ones.

I would take the grief of this illness in two seconds rather then never being able to see my son again.

Don’t EVER ,EVER give up on them and don’t ever give up on hope for them to get better. If something isn’t working for your loved one… Get another Doctor ! KEEP being an advocate for them !! They need YOU !!

I thank you all, who wrote me such kind words and Im so grateful for this form .

Fight for more research if you can… Just don’t give up !

[Sando]

Wow. No words seem fitting to express the sorrow and love we’re likely all feeling. Thanks for sharing. Your story is a great encouragement of hope, perseverance, and selfless love. Your kindness to come back and post for the rest of us is a sign that love exists in our crazy world. And love wins.

[Mojoclay]

@Sando Your post must be the one I read today.

[Mojoclay]

My son took every medication that could be offered ! injections and all… it took one good doctors to filter it all out and he was able to grad from college and get into grad school after 2 years of being out of school and in hospitals… it was not NORMAL and it scared us as parents very, very much but as I realized early on… there is NO CURE but there are many , many possibilities and our Childs soul is always there and to show again… THEY ( the SZ ) just need us to keep the hope and be their advocate and fight for them… as we would if they had CANCER… God bless and keep fighting for more research …

[Mojoclay]

I realize that SZ is Just like CANCER ALL diagnosise are different… some more severe then others. Just never give up !

[Elsa]

My heart goes out to you. I cannot imagine the depth of your pain. You so beautifully articulated the dichotomy of grief parents experience in loss of a child to schizophrenia and in death.
You have given us a gift by sharing your story. You remind us to never give up hope! Words cannot thank you enough!!!

[Joana]

Deeply sorry. You’re all heart. And courage. Thank you for inspiring me to keep on fighting. It seems I forgot to do that for a while.
Thank you for being so generous and sharing so much with us.

[Donna1]

You are so strong and caring to come back here and offer us hope in the midst of your own sorrow. My heart goes out to you. We all
live with the constant fear of our loved ones losing their battles. Your message came at a time I really needed it as my family is telling me to give up, calling my efforts “enabling” and telling me to take a caregiver job on an island with a stranger. Why would I do that and abandon my own? I would only do that if my son could come along. May I ask who was the Dr who did help your son? You may private message me if it’s not appropriate to list Dr names on this forum. Again, I’m so sorry for your loss. But you are a hero of hope to all of us here on this site. Jenna

[Mojoclay]

If you have a loved one with MTHFR gene mutation ask your Dr. to do a blood clot factor test on them.
( this could have saved my sons life ). Their physical health is as important as their mental health. You have to find a good , good !! general practician to work with the psych… Its a whole body illness.

[Mojoclay]

I wish I could tell you “the best Dr” to go to… There is not one but what there is , is the best advocate and that is YOU… If something ( Meds ) aren’t working for your sz loved one… Tell them and they ( if they are GOOD) … Will Listen to you… If they don’t listen to YOU then you need to find one who will.

• My sons Doctor was devastated with his death and now has tested all of his patients with the MTHFR for the blood clot factor. So, He also learned a very very sad lesson and lost a patient in which was doing to well on the pyc issues… but he ( dr) had not taken care of the physical issues. IT GOES HAND IN HAND …

[Mojoclay]

regarding a good Dr… My sons Psych would not see him without a loved one present.
I as his mother went to each and every appointment , not by choice but by request of the Dr.
The Dr. wanted to hear his issues and beliefs and thoughts and then would ask me about them and we would use L.E.A P together…
His reality and Mine were two different stories… and a good Dr. wants to hear from . reality…and then he goes from there…
ITS A TEAM EFFORT! Find a Doctor that wants to work as a Team and not just with the patient … Thats a lazy Doctor who may just through meds at the patient to get them out… YOU are THEIR amazing grace and what you can do for them will be amazing. ! DO NOT GIVE UP!! Fight for their lives !! as you would a cancer patient.

[oldladyblue]

Hello Mojoclay, I remember you well, I read many of your past posts. I am so sorry for your loss, I have goosebumps and tears right now. You fought a good fight for your son and you have very eloquently shared your thoughts on grief for all of us to comprehend. I know that my daughter has the MTHFR gene mutation. I will get her to get this checked out further now as she never went back to the doctor who tested her DNA 3 years ago. Nor does she have a primary care doctor that she sees, so I will also make sure that happens. Thank you for coming back to the forum. Your advice was valuable to me. I am sorry you couldn’t get on the forum in June. @SzAdmin told me in the past that if the main site isn’t available you can get on family.schizophrenia.com usually. I used that in June for awhile. I can only imagine how hard it was to lose your son after helping him to climb out of the schizophrenia black hole. How wonderful that he got into grad school.

[Mojoclay]

I have tears for all of us and I know when I get stronger I will be more useful in this tragic and terrible illness.

[daquilamarguerite1]

My heart breaks for you. My son is 33, diagnosed age 25 paranoid schizophrenia. He’s never lived independently. I can’t imagine being more sad for him than I already am, unless this cruel disease killed him, as it did your dear son. Xoxo

[Ohmywhatnow]

I am so sorry for your loss. May you find peace and remember the good times…yes, there were good times hidden in the pain and worry. They will surface in time. I will keep you in my prayers.