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 !