Our journey with Trisomy 18 to meet our daughter Mylah Roberta.... Mylah was born Saturday, March 24, 2012 at 5:11 am weighing 5lbs 3 oz. We are praising GOD for her Life! This blog will continue to chronicle Mylah's Journey with Trisomy 18 as she continues to defy odds with each breath she breathes!
Today is the first day of what I hope & pray is a ONE-DERFUL month!
It's Trisomy Awareness month! March! 31 days to honor all the Trisomy families. The babies who have not yet been born, babies/children who are going home for the 1st, 2nd, or 3rd time, the children reaching their milestones-1st, 2nd, 3rd-ANY birthday. Those undergoing long, enduring operations to repair heart defects, floppy airways, orthopedic issues, jaw distractions. Those who fought against the odds& now have a special place right next to our heavenly Father. These STRONG children and awesome angels! Some counted out from the beginning, never given a chance.
March is a month when we wear our light blue & our ribbons to show our support for the many families who are traveling the journey of the unknown. Those who have to make life altering decisions. Decisions that not only affect the parents, but also grandparents, aunts, uncles, cousins, friends, teachers, nurses, & DOCTORS!
Nothing can prepare you for this journey, but I can guarantee it makes you stronger with each step. You will NEVER be the same.
It's the month dedicated to the extra! The extra chormosome. Something so small, but yet so BIG!
I am a PROUD Trisomy mother. I'm not ashamed of my daughter. I don't regret one decision that I've had to make thus far. I'm thankful for the opportunities that we've been given. I'm grateful for hospitals like C.S. Mott Children's Hospital in Ann Arbor, MI-where my baby was given a chance! I'm also thankful for hospitals like the one i birthed at. I received my first lesson in tolerance that taught me that I would need to develop a loud strong voice for my daughter and thick skin-(because not everyone agrees with you)
I am PROUD! Proud that Mylah has a feisty personality. If I had chose to abort my child simply because of her extra chromosome, I wouldn't have the pleasure of knowing that she is very ticklish and loves to smile. I wouldn't know what it's like to paint my daughters toes. I wouldn't be able to go to the store and continuously buy her clothes that she really doesn't need. I wouldn't be looking forward to her next accomplishment. I wouldn't be praying to end the year free from ventilator support 24/7. I wouldn't have spent the summer in the hospital meeting some wonderful people as she RECOVERED from open heart surgery. All these things and so much more wouldn't mean so much to me had I chose the left turn instead of right at that significant fork in the road.
Thankfully, I have the best GPS there is available. My GOD is an awesome GOD. He is able to do exceedingly and abundantly above all things! He has the last say. He continues to show me that he is in full control and that he felt I was worthy of such a wonderful miracle named Mylah. I'll never be able to thank him enough. He gets ALL THE PRAISE and ALL THE GLORY!!!!!! because it is only by his grace that my child, born 5lbs 3oz, survived open heart surgery weighing 7 lbs., suffered respiratory distress which resulted in a trach and vent, came home and continues to develop more and more each day. Reaching, Kicking, Laughing, & Cooing. All the things they say Trisomy 18 babies CAN'T & WON't do.
"It's only prolonging the inevitable"
"The baby is going to die anyway so there is no use in repairing her heart"
Words that will forever play in my head. No matter what I do or where I go I will always hear those words.
When I look at Mylah the smile on her face lets me know that those words have no power at all and that GOD has all the POWER and he's got the Trisomy 18 babies & children... in his hands....