Surviving everyday grief and the loss of a child with zellweger syndrome

The loss of a child can kill your soul very slowly. Surviving a loss or grief of any kind is extremely painful and can cause physical damage to your body and mind . I want everyone to know that one step at a time , one moment at a time , together we can survive tragedy . We can smile again , we can love again , we can be happy again . Follow me on IG @soul_surviving or Facebook so together we can climb out of the darkness . There is nothing I will hold back . My darkest days , my longest nights , my pain and my healing . I now know , it is ok to laugh and not feel judged , it is ok to live while grieving your loved one . It is ok to allow the universe to place you where you belong . Soul survive with me and join me on this journey of surviving a death . Thank you to all of those who have reached out to me for support and for giving support . Many medical diseases are “rare” many tragedies are “rare but the truth is , these problems are not rare , they are just not spoken about . Many of us go into hiding and feel we are making others uncomfortable by our tragedy and our grief but truth is WE Need TO SPEAK OUT. We need to discuss our rare situations and we need to let others know they are not alone and we can be happy again .

[@LisaLisa-iv5mu]

Hi Suzanne, I stumbled across your video. My deepest sympathy goes out to you and your family. May God give you all peace and strength during these difficult times. Words cannot express how sorry I am for the loss of your beautiful son, Jacob. You’ll always have an extra guardian angel 👼 by your side ALWAYS. I also lost a child, my only child - 8 months ago, so I can relate to your pain - it’s a pain like no other. Thank you so much for taking the time to make this video and sharing your story. You and your family will be in my thoughts and prayers. 🙏

[@mvboobiez]

Hi Lisa , many many hugs to you . Thank you for writing. ❤️ they will always be with us . They will always send signs . And we will meet them again . 🌻 we survive this battle one day at a time . what is your child’s name ?

[@anhdo3337]

I understand very well what you have been through, because my child has the same illness as your child. he was born on 12/28/2019 and he died three months later on 6/4/2020. Now I just gave birth to a baby girl and she behaves just like my first son. I am very sad now and think that I will lose her again

[@angelaemmett4224]

My son has Zellewegers Syndrome. I live in Kirkland. I’m alone too

[@patrickthorne5113]

Hey is ur son okay? My son was born one month ago with zellweger syndrome and it’s on the severe side according to the doctors