Silvia's Kingdom

A Mother's Journey

Hi! I'm Silvia

I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.

Blog · February 2, 2021

My Interview with Grey Genetics

A BIG *Thank You* to Grey Genetics for the Interview!!!

ebmom

Thank you so much Kathy @haugekathy for adding Nic

Thank you so much Kathy @haugekathy for adding Nicky (bottom right) to this beautiful painting… just gorgeous! Thank you so much 😊

Every single evening, no matter what, this Princes

Every single evening, no matter what, this Princess comes and sits next to me on the couch then proceeds to take a nap. Sometimes she sits on my legs and others begs for some petting by putting her head in my hand 😂 She has no idea how much she helps me ♥️❤️♥️ She’s been doing this for years… #crazycatlady #ilovecats
#catsofinstagram #instacat #cats #catsareawesome #catsarethebesttherapists #catsarehealing

I finished my puzzle 🧩 of the butterfly 🦋 la

I finished my puzzle 🧩 of the butterfly 🦋 lady and it’s so beautiful and large! This was probably one of the hardest puzzles I’ve done to date, but I loved the glitter and the colors! So pretty! I framed it and I am now looking around the house for the perfect spot. I am trying to embrace the grief as much as possible and move through it, let it touch every atom of my being so I can heal ❤️ #puzzletherapy #butterflylady #springqueen @buffalogamesinc #flightsoffantasy #puzzle #puzzlesofinstagram

Tanti cari auguri 🎂 di Buon Compleanno alla mia

Tanti cari auguri 🎂 di Buon Compleanno alla mia adorata mammina 🥰 Happy Birthday to my lovely mamma! I ♥️ you!!! #happybirthdaymom #85birthday Grazie Katia per la foto ❤️

I got this beautiful personalized wood box to put

I got this beautiful personalized wood box to put the most precious things I have of Nicky… his hospital bracelet, his baby pillow… his little Mario Dolls, etc… so many little things that I want to treasure forever ♥️

Just a little update ♥️ Thank you so much ever

Just a little update ♥️ Thank you so much everyone for your support 🙏🏻 .
.
.
#grief #sorrow #loss #losingalovedone #grieftruth #lifeafterloss #griefjourney #childloss #losingachild #imissmyson #griefsucks #grieving #grievingmother #bereavedmother

I will eventually write a book that continues Nick

I will eventually write a book that continues Nicky's story. "Butterfly Child" was the first 18 years of his life that starts when Alex was stillborn-I wanted to include it because the way I treated and lived through the EB diagnosis was affected by my loss 100%. The "sequel" will delve into his last few years. I am not ready to write it quite yet, it might take me a while to get to that point. At the moment and for I don't know how long, I feel lost and confused. Right now I am busy packing Nicky's bandages to donate them to Debra. I can only do so much every day before it becomes "too much" for me. I am almost done thankfully but it's overwhelming. They are everywhere around the house, the garage, you name it. I am also looking for a job which is also overwhelming. Nicky wasn't able to do much on his own so I could not leave him alone, hence the state paid me to be with him and be his caregiver, nurse, companion etc. Because I didn't get to spend any time with Alex, I felt I needed to enjoy Nicky as much as I could and I was immensely grateful I was able to do so and that I lived in a state (God Bless California) that helped families like ours. Unfortunately I lost my income when he passed so having been sort of away from the work force for this long I have to re-invent myself. If anyone has any opportunity for someone that has experience social media, photoshop, html, graphic/web design, photography and related professions let me know.... THANK YOU!!!! .
.
.
#grief #sorrow #loss #losingalovedone #grieftruth #lifeafterloss #griefjourney #childloss #losingachild #imissmyson #griefsucks #grieving #grievingmother #bereavedmother #author #book #bookstagram

I will never stop missing you my sweetie. I bought

I will never stop missing you my sweetie. I bought my electric piano 3 years ago but never really has the time or the energy… but mostly the patience to learn a song by heart. I found a simple piano version of Amazing Grace and I will learn it for him. ❤️ .
.
.
#grief #sorrow #loss #losingalovedone #grieftruth #lifeafterloss #griefjourney #childloss #losingachild #imissmyson #griefsucks #grieving #grievingmother #bereavedmother #amazinggrace #piano #musicheals

Load More... Follow Me on Instagram

Post Views: 557

Related Posts:

Tags: Epidermolysis Bullosa Grey Genetics Podcast rare disorder skin disorder

You may also like...