5 years ago March 2nd my twins entered the world of the living- one at delivery, the other post-resuscitation. Their early life was marked with intubations, shift changes, blood draws, substance withdrawal assessments. They struggled and fought through pain, breathing difficulty and a lack of a single parental resource. The first year was spent healing and sickening, healing and sickening. Operations for trach placements and a gastrostomy tube placement after multiple replacements of their nGs. Their strength was tested at every turn, one step forward, three steps back. 6 weeks in the hospital is how my son spent his first Thanksgiving and Christmas. Thank goodness for a wonderful foster family and caring nursing staff.
5 years later, some of the struggle remains, but life has improved to more living, less medicine. My children continue to require tracheostomy tubes, but celebrated their first birthday ever without one of them having any type of G-tube. They both enjoyed grain-free pizza & cake with their younger sister and Nana I & a couple cousins.
A family has been made for them; 4 full birthdays of family. I am reminded how much I love them and how far we have come, each and every day. The last year, ages 4 through 5, has included regular doctor visits but no in-patient hospital stays. It is their record-year for health status that has been possible to maintain at home. Weight has been gained, height has been gained, vomiting has been reduced to “rare” status.
Bikes & helmets & games & singing & dancing & running & playing – EVERY day. I have no word but ‘miracle’ to describe their status in life today- a miracle of the universe. Even as struggles remain and challenges are left to face- life is good nay, great.
I am hoping the wonder of 5 will add to the celebration! Happy birthday, Adrien & Tavish!