Nia this 1st year of your life has been an incredible journey- one that only God Himself could’ve written. When I first knew you were created in my womb- my perspective on life change immediately!! Mommy was so happy- that I ran downstairs to tell your dad while he was in the shower- that we were going to be parents!!! Little did I know our parenthood pregnancy journey would be an experience of a lifetime! You showed us early there was nothing textbook about you- including being able to wave at 12 weeks in my womb! 🤣
September 27, 2017 is one day I will never forget- your birth wiped away my 17 weeks (your initial diagnosis date- June 1, 2017) of tears and broken-heartedness at the thought of losing you! Nia we are sorry in some ways because we had prepared for your death and burial, while still believing in God’s miraculous works! See God used your dad’s dream to save you- because we had made the appointment to terminate you, not because of lack of faith but going along with the textbook medical expert answer! But Again you proved not to be anything of a textbook!
The way you decided to cry on your birthday was your way of telling me- mommy I am fearfully and wonderfully made! I am your imperfect perfection! Dwarfism doesn’t define me mama! Don’t be sad! I am here…and my God you are here!
My heart broke initially knowing you had a form of dwarfism- as I had prayed to God before you were formed to NOT have a small/short baby. This prayer went unanswered from God because He truly wanted to show me how tough I could be even in the midst of my brokenness . Not many people witnessed my physical, mental, or emotional pain from your prognosis!
I want you to know, this prayer was not because I don’t love all of me (and you? including my height, but more so the world/society has a way of cracking jokes and making you feel less than if you are of certain physical stature. God gave me exactly what I thought I didn’t want or need. He made me face my fear and hidden insecurities head on. I blamed myself for your condition- but then quickly realized your dad (even at 6ft 2 in) had this special gene change and I just so happen to have an unknown magical gene change as well that gave us beautiful you! We are the perfect storm together and you are our lightening strike! 😍
Was I angry initially yes, because I was ashamed and didn’t want the world to judge you for your physical appearance and you have to endure the stares and judgement of others! Everyday, I am getting better at accepting your condition- and realizing how amazing you are- you are perfect! I love all your 12 fingers and ten toes, and Hawaiian Silky Hair! You are truly a doll- and broke the mold of what a “little baby” should/would look like! I no longer shed tears for your condition, but cry because you are all mine (and your dad’s), and of course God’s beautiful creation!
My heart and psyche have endured so much in this last year (and a half), but your smile and tenacity have kept me! Your birth brought me joy, yet your NICU stay brought a complicated sense of joy and pain in ways I never imagined! Mommy fought so hard for you- and vowed to protect you! I maintained survival mode and strength because your name spoke every thing about you- Purpose baby! I didn’t know that I needed you honestly, until I Needed you! The day you stopped breathing, my heart couldn’t fathom the thought of losing you- again!!! So grateful that God understood as well! 💗💗🙏🏾😘
You really have brought so much love and happiness to your daddy and I! Your spirit and journey have touched so many and we pray that you continue to bring light into this world!
You have defied the odds even developmentally- though you are g-tube fed, everyday you work to take more and more food by mouth while mommy continues to pump liquid gold into your tube!
It looks like you might skip crawling and will instead just walk! Wow! I am sitting on the edge of my seat waiting for you to just take off one day soon! I remember your milestone of smiling back at me for the first time, and when you decided to sit up on your own right before you turned 8 months- and considering you had an almost 4 month NICU stay! Your claps and hello waves are just too much for me!
Nia though you may be small in statue- according to society’s “normal” standards you are truly anything but that! You are strong, you are big, you are smart, you are mentally tall! I am here to witness you break glass ceilings and continue to fall outside of the textbooks! You aren’t your condition- you are fearfully and wonderfully made!
The world will know you beyond Ellis-van Creveld Dwarfism! As your mommy, I may not have a medical condition, but I too am petite and fierce- so I will be sure to lead by example to help you navigate life’s challenges! You won’t hear “can’t” from mommy or daddy! We may just have to improvise along the way!
You are loved by so many so I know there will be many to cheer you on! Just know that mommy and daddy will ALWAYS be your Number 1 supporters!
I never knew love like this until I had the chance to feel you grow from the inside out!
Nia Alexandria you are 1, you are 1!!!! I am in complete awe that we are celebrating an almost unimaginable milestone just a year ago! I love you “Doll Baby.”
And we know that all things work together for good to them that Love God, to them who are called according to His PURPOSE! ~Romans 8:28
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ~Jeremiah 29:11
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. ~Psalm 139:14
A person is a person, no matter how small! ~ Dr. Seuss
Though she be but little, she is fierce! ~William Shakespeare