Nia today marks 4 years around the sun and yet your birth still feels like only yesteday! The trauma and blessing all in the same 24 hours is still raw as I write today! The grief hit me like a crashing wave at this hour. I am no longer angry, but sometimes the heartache still feel like I just received the grime prognosis of your life expectancy – zero to a few hours at best or even worse – stop your heart before you arrive in this world so you won’t suffer. When I think about all the expert medical opinions I received four years ago, and then to look at you today – part of my soul aches for the thought of me missing all the things you have become today!
I am grateful “Nia’s Journey” set me on a path to be a crusader not only for you/us – but to fight for the health and lives of other moms and babies!
Your life pushed me to be even more of a risk taker! I’ve never been average, but God truly raised the stakes when He gave me you! He knew you would set fire under me to Bet on Myself – because your life would require me to do so! God continues to order my steps and align them with greater purpose ever single day! The best part, it’s always connected back to “Nia’s Journey.”
You are the epitome of Independent! You are ambitous and a girl on a mission, which we [your dad and I] have clearly seen in your love for the beach!
I have watched you grow more in love with not just sand at the beach but the ocean. I remember when you were sooo afraid of the ocean and now nothing can stop you! The beach is our family’s happy place!! This just gives me pure joy! You truly are our little mermaid! We are incredibly grateful to Make-A-Wish for making your Ultimate Tea Party by the Sea come true this year! These memories will last a lifetime.
You totally deserved it especially enduring reconstructive bi-lateral hand surgery that required casts for a whole month! Just like you bounced back in unprecedented time from open heart surgery, you did the same for this surgery – which was not nearly as complex but equally nerve wrecking and requires a bit more day to day assistance.
You are truly a warrior and whenever doubt creeps in, remember “I Can Do Hard Things!”
This past year has been quite the experience. The pandemic caused us to make more tough decisions – would we send you to school or not? What type of setting – home, public, or private? Ultimately we decided on an independent institution that didn’t make public health and safety political. Your health along with all students is considered of the utmost importance.
Also, because your school’s values – you are loved, accepted, and appreciated for the diversity you bring to the school. I am able to educate your classmates, families, faculty and staff about your differences yet your similarities. That love takes a bit of my worry away!
Some days though I must say I hold my breath waiting for you to come home and say someone has been unkind – yet that hasn’t happened. I know it hasn’t been a full month, but I know you are in a safe and healthy environment conducive to a positive learning experience.
I am excited for your next year around the sun – you will continue to do amazing things!!
Thank you for giving me so much inspiration because of you I am a strategist, advocate, advisory council member, blogger, a best selling author, and most importantly a warrior mom and an absolute believer of Christ! Without Him, there is no you physically on this earth!
Love you! #Dollbaby and my #Bossbaby
NG tube in Nia’s mouth
NG Tube in nose- thank you to her amazing Neonatologist, Dr. B at INOVA Fairfax! No one else had been successful with inserting this tube in Nia’s nose
Chubby Nia- NG Tube back to Mouth after Nia’s coding episodes 😢
Nia a few hours post G-Tube and Nissen surgery 
Venting the tube” – See air/gas bubbles in milk
Nia’s at-home feeding pump- Infinity Orange designed specifically for infusion of breastmilk
Nia Alexandria 