Blakely Mae Martin is an 18-month-old little girl from Krum, Texas who loves to dance, smile and laugh and was born prematurely at 23 weeks gestation. At just 22 weeks gestation, we were Care Flighted to Harris Methodist in Ft. Worth after a premature rupture. Blakely waited six more days to show us what she was made of. After her birth, she spent 234 days in the NICU at Harris Methodist, and then 113 days at a Transitional Care Unit at Cook Children’s where we learned to properly take care of our daughter. Blakely Mae has a tracheostomy due to her very sick premature lungs and was ventilator dependent until we were able to wean off the vent in July. We’ve now been home for six months and we have just blossomed. Blakely has a brother who is only eight months older, and willingly or not he really has helped with her development.
When we first got to Harris Methodist, we were told Blakely Mae had less than a 10% chance of survival. Now she’s crawling, she’s pulling up, she’s trying to speak! She truly has overcome the statistics and she blows me away with her perseverance. Blakely is a survivor and she shows us every day the power of faith and prayer. She amazes me that through all she has been through she is able to smile daily through it all. Her spirit alone is something to be proud of.
The main challenge Blakely faces daily is breathing. So many people take breathing and healthy lungs for granted. When you have a child you just expect them to know how to breathe and there not be any issues, right? When it comes to breathing, you need endurance, you need lung strength; it’s LIFE. But every day we’re progressing to overcome this challenge. We do have other challenges, like taking food by mouth due to oral aversion and overall muscle strength, but being intubated and laying in a bed for the first five months of your life will do that. These challenges are adaptable however. We are g-tube fed, we have a speech therapist, we go through feeding therapy, we have PT and OT.
Blakely is unique because she never takes no for an answer. Really. The nurses always joked while she was in the NICU that she had a feisty personality and was a “wild woman.” It wasn’t until she got home when I really figured out what they were talking about. She is strong-willed and has never done anything by the normal route. She’s given every doctor a curve ball because it’s literally her way or the highway. Nothing has been by the book.
I believe that to properly advocate for your child, you need the proper knowledge to do so. That has been the biggest challenge as a parent. I don’t ever want to go against doctor’s orders, but then you think to yourself that not every child is the same. Could something else work better or be easier? Not having the proper knowledge of all the ins and outs and options makes it hard to advocate for what your child needs, especially when something isn’t working and it’s the only order you have.
I know that every story is different when it comes to being a special needs parent, but we are the parents of the bravest, most angelic children. Don’t give up, and give yourself grace! Look at the traits your child has, their fight, perseverance, drive, strong-willingness; they got it from somewhere: YOU! If they can do it, we can do it and we know God wouldn’t give us anything we can’t handle.