For those who don't know us yet, this is my daughter, Kayli, and I.
Kayli is 4.5 years old, and has Trisomy 18. In God's plan and timing, she has had 8 miracles of life, including; (1) Surviving T18 and the worthless "incompatible with life" medical label attached to it, (2) 32 minutes of anoxia (she passed away and came back to life), (3) 7 weeks of Endocarditis and Sepsis without antibiotics (it took us 7 weeks to convince physicians that our daughter deserve antibiotics to treat the infections), (4) a pinhole sized airway for 3 weeks (caused by a home care nursing accident, physicians refused to evaluate her because she has T18..eventually an ENT scoped her, found the anaphylaxis damage, and trached her), (5) a surgically perforated bowel, (6) a surgically misplaced gtube (surgeon caused a fistula, placed the gtube in her colon instead of her stomach...and left Kayli like that for 3 weeks, refusing to fix her mistake, nor explain herself), (7) a hospital induced medication overdose for the length of the hospital stay (10 times the amount of a heart medication), (8) a physician ordered Potassium overdose (after 1/2 hour of diarrhea to get rid of the Potassium, her level was still at 8.2...levels are critical if outside the 3.5-5 range).
Despite all that has been thrown at her, she has gracefully forgiven all those who have harmed her, and taught her family to do the same. Kayli is an active member of our family, and contributor to our society. In her young life, she has established new policies and rights for special needs community members, given to others in need, and done almost everything on her bucket list (which is more than most adults can say!)! I've been told that when in public, she gets stared at. My love goggles tell me the stares are of admiration. You see, when some have mistakenly implied, she's with me, (which I understand because she is a minor)...my reality is that I'm with her. She is far more worthy of a follower than I am. We are Blessed to have Kayli in our minds, lives, hearts, and arms. When it is God's Will that she goes to heaven, I only hope that I can live up to being her Mom, even when I'm standing on my own, and no longer "with her". Not only is Kayli compatible with our lives, she has made my life compatible too!