#FamilyIsEverything. APL = 8.75/10 *Authorized conspiracy theorist *Not an authorized preacher.
Born a rebel, mom of 9, former ER/NICU/PICU/Peds nurse, now M.Ed. Spec Ed, anti-vax, off grid lover, Christ follower, won't tolerate BS...
I've seen the other side, at least the good side (Heaven). When my sister with Downs died in my arms, I was broken and bleeding inside and all I wanted was to know she had arrived safely - somewhere. God in His mercy pulled back a curtain and let me see my sister - not as a 39 yr old Downs person with severe medical needs, but as a 4-5 year old little girl dancing in joy on the greenest grass, with the bluest skies I have ever seen. And the JOY in that place was so intense it physically hurt me. I couldn't keep watching her, I had to turn away because it was too painful to endure, and then she was gone. And don't get me started on her moment of death, when I literally saw her little spirit race out of her body, thru a window and up into the sky... I was given a great gift that day to see both happen.
Even before this, I knew our lives here are earth are a training ground, and also will separate us into two groups. Everything I learn and experience here will be used later in some way
That is my major fear of losing my daughter that is Downs. She is my everything 💕 she is what keeps me going after all our family, including my husband left us. I also have an amazing son and 2 grandbabies that are my life as well. They all are equal in my heart, no matter what. My daughter is the only one with me and I would be so lost and empty without her. ( if any of this makes sense )
Born a rebel, mom of 9, former ER/NICU/PICU/Peds nurse, now M.Ed. Spec Ed, anti-vax, off grid lover, Christ follower, won't tolerate BS...
Also, I fully expected to see her as a 39 year old Downs woman. What I saw was a little girl, aged about the same level as my sistern's earthly cognitive level. 4-5 years old. She was dressed in a pristine white dress, dancing barefoot on the greenest grass and she was twirling in circles and just laughing with such joy. She was free, she was who she was inside this earthly form - but in heaven she was a free spirit and who she was supposed to be.
Hard to explain - but again, although my heart absolutely broke when she died. The grief was so awful. Even with being immensely overwhelmed with sorrow. I could never wish her back after what I saw. Her joy was too complete, and she was safe - forever, no more worries about her.
The hard part was picking up and living. God gave me the strength for that too...
Born a rebel, mom of 9, former ER/NICU/PICU/Peds nurse, now M.Ed. Spec Ed, anti-vax, off grid lover, Christ follower, won't tolerate BS...
I understand what you think and feel. Downs people are exceptionally special people - God holds them in His hands, and He loves them even more than we do. My sister was 39, she was born with the hole in the center of her heart. Doctors said she would not live past her first birthday, then her 3rd, then her 5th, and then UCLA began doing a case study on her because she defied every odd. What they didn't know was that my mother was a prayer warrior of the highest level - and prayer kept my sister going. My mother died when my sister was 13. Even before that I had taken over all her care, when my sister died it was not only my sister but very much like my own child too because I became her surrogate mom.
I can tell you what I saw within minutes of my sisters death was so beautiful, so intensely joyful, colors and sunshine more intense than you can imagine - but the sheer happiness of my sister still carries me to this day. I can't be sad. She's too happy there - I can't wish her back.
Mom of 2 ...💙 Caleb Michael 💙 💗Riley Kathryn 💗 ... I have 2 Grandbabies 💙 Knox Bradley 💗 Kollyns Kate ❤️Patriot 4Ever❤️ Trump/JFK
My daughter was born with 5 holes in her heart, and ASD/VSD. She wasn’t breathing when I had her, it took about 2 mins to get her breathing. They took her straight to the NICU we spent our first Christmas there. ( BD 12/21/2003 ) After they released me, I spent the entire time going up and staying with her. After a week she got to come home, I had to set my alarm every 2 hours to wake her up and feed her as well as giving her lasix and degoxin ( sp ) . At 5 months old she was 10lbs and under went open heart surgery to repair what they could. Today she still has leakage in one valve that was not completely formed. Many years later we found out she had scoliosis and she had to have surgery for that as well. ( 2 rods 18 screws ) a year after that I found out she was assaulted at school by the TAs they broke one of the screws out of her back and broke the L4 vertebrae and had to have a revised back surgery that put her in the PICU for 5 days. Both lungs collapsed and left filled with fluid