I go through the day with a weak smile on my face. Sweet baby boy Caleb has been touched by the realities of Trisomy 18 and died. Such a harsh word...but I learned that it is one of those words that holds reality, true life, finality. Caleb was here 29 amazing months, so was Brianna. Caleb's death was caused by pulmonary hypertention, so was Brianna's....Caleb gave hope to so many people with babies born with Trisomy 18....so did Brianna.
The pain never goes away, it just softens a little bit with time. God was so good to have shared Caleb, Jeannette, Steven and Caleb's family with all of us, may he continue to bless them during this very difficult time.
Brenda congratulations for sharing your daughter Brianna' life so well in what you have put up here. She is one of the most lovely vibrant little girls that has been on this earth, her pictures do say more than a thousand words. I've worked with special needs kids in direct care, then in social work and now am a grandmother. My grandson's totally unexpected prem birth @ 29weeks last May from perfect living young enough parents providided a humbling close shave since with prayers, God's grace and good care he's turned out fine.
ReplyDeleteHe has a same age cousin who was found to have PKU and also is doing well.I got to realise anyone can be in the position of having a special needs child. The current Republican contest brought Sanatorum to notice and his being with his sick daughter. While I'd glossed over Trisonomy 18 and assumed I knew a fair bit on most disabilities, especially since my grandsons birth getting me relooking at children's conditions I thought I'd look the condition up. The information is so negative and sad plus it's not just another worse form of Downs, I was then wondering how Sanatorums child was still alive. Anyway it led me to here and I'm glad it did and showed me what lovely kids they can be despite the horror picture in clinical terms. I cringe at the former ignorance I was in and would have remained in. What's scary is that in my working time going back 25yrs and even personally I've never come across anyone with a child of this diagnosis, so goodness knows what happens to these children in Australia.
Your family's love and your diligence in sharing Brianna are a lovely and enlightenining gift. Thanks for continuing to share years along the way.
Wishing you all the best, Brigitte.