Happy Birthday Mylah!
Mylah is TEN!
Just typing those words brings a feeling I can't describe.
Last Thursday on 3/24, marked 3,652.425 days Mylah has lived on this Earth. Life took on a new meaning when she was born, but these last few years with other life events and the pandemic, has redefined what living means.
Mylah has always given me so many reasons to be thankful and grateful, especially for things many of us take for granted. To have survived the recent events of the world and make it this far without being ill and hospitalized is a complete blessing.
Thursday morning, we woke up snuggled in bed together around the time of her actual birth. Reflecting back on that morning 10 years ago and the journey to that moment. Recalling all the negative things we were warned of and the assurances of pain; to actually being fortunate to look my daughter in her eyes, gleaming back at me in the room lit only by the blue hue of the television...... she lives, 10 years later, she still lives.
The last 10 years seem to have gone by like a flash of lightening, but some moments, it felt as though time stood still. An emotional rollercoaster that could rival the most scariest theme park ride. Many life changing decisions; sometimes questioning if we made the right choice for her care, to making every attempt thus far to give her a life of love, happiness, and fun. I remember in those early days with the diagnosis being unsure if I could mother a special needs child. Now, I feel like an expert who could give a TED Talk on navigating this life.
I remember the feelings that came over me in the delivery room that morning as I begged her to breathe, to make a sound, just to let us know she was alive-the silence was so loud and it felt as if she and I were the only ones in the room. I dedicated my life as her mother, her advocate, and her biggest fan. There was so much uncertainty in those early months, I can honestly say I didn't think of how life would be this far ahead. I was just trying to take it day by day and at times, hour by hour, allowing Mylah to go at her own pace and making sure that she was supported along the way, as the years went on I hoped we would make it here.
We have experienced some frightening moments; open heart surgery, unexpected tracheostomy, being vent dependent, complications from g-tube surgery, seizures, hospitalizations and ongoing tremor episodes- but Mylah has shown that she has strength like none other. She never ceases to amaze me with her wondrous spirit and agility.
Mylah has grown and developed on her own course and when pushed she has made some great strides. A far cry from the doom and gloom outlook we were given in the beginning.
This journey has connected me with families from around the world which is another reason why I share with transparency. The unknown in the early years was not a good place to be in. As I searched for other Trisomy 18 kids, I didn't find many who looked liked Mylah, especially living children who looked like Mylah.
Having a older Trisomy 18 child also comes with it's own set of "challenges". Most of the medical data that is being utilized is outdated and doesn't capture the true essence of our children when given medical interventions. This is why we advocate, this is why I always seek equal and fair treatment options for Mylah because it will help other children after her receive better treatment options so their parents can make better informed decisions.
Mylah has overcome a lot in her 10 years of life and while it would be natural to anticipate what the next 10 years is going to bring us, I'm just going to live in this moment. Being thankful, grateful, and appreciative of all we have overcome and all the achievements she's made.
I remember that day at the hospital as we were discussing options after the confirmation of her diagnosis, I can recall the Fetal Medicine physician in the most depressing, hope sucking, monotone voice I'd ever heard, explain how Mylahs life wasn't worth saving, how they would forego additional prenatal care and limit interventions during birth. The most heart breaking statement of that day was when he told us our child, the baby that we wanted so desperately would never smile. Those words have been etched into my memory like a permanent birthmark of that day. I can hear his voice at times and it makes my stomach drop. But my hope is always renewed at the site of that big, bright, beautiful smile. When I call her name and she turns in my direction and I'm greeted by that smile, I'm reminded of God's love and promise. When she's excited while watching Princess and The Frog or hears the beginning sounds of the Moana soundtrack, that smile lights up the room brighter than any lamp could.
The last 10 years Mylah has given me enough smiles to last me a lifetime and it's something I will never get tired of witnessing.
Happy 10th Birthday Mylah, you have made me extremely proud to have been selected to mother you and it's the title I'm most thankful and proud of.