This letter is written by Liz Knight, Blakely’s grandmother (Emily’s Mom), better known as Mimi. She is a Real Estate Agent in Jacksonville Florida. She spent many, many, many days with Blakely in the hospital. She was a rock for Mikey and Emily.
My sweet Blakely,
Oh, how I am missing you these days. I am thankful to have a lot of pictures of you, but the videos are my favs sweet girl. I go to those to get my Blakely fix. I just want to see you, kiss you and hold you again!
I have learned so much from you! You know, silence is an interesting thing. I have been overwhelmed by silence since God created you. The first time was that day your Mommy and Daddy heard the news that you might not make it into this world. That day the silence before the news was so hard, but then the news was even harder. The doctor said you had a rare brain development disorder. I learned to say a word so hard to pronounce, but harder to believe had affected you. The disorder would likely cause you to pass away in the womb: a thought I could not wrap my head around. Your parents were crushed. I was crushed. I could not think of anything but losing you. I could not think of anything but your mommy and daddy losing their little girl. There. Were. No. Words. How could our loving God allow this? We prayed fervently for a miracle that you would be completely healed and live, and God is so good. He heard our cries and you lived! And boy did you live!
It was hard to keep going through life day to day, but so many sweet family and friends were praying for you and sharing encouraging words and scripture. God kept saying to me, “Trust me,” over and over. God said, “Trust me in the silence,” and I clung to those words for life. When I would get overwhelmed with grief I would say those words, “God I trust you.” He would give me a peace that I could not understand. He held me while we waited and he helped me to get through each day.
Blakely that silence thing didn’t seem to suite you well. You seemed to love music! I know you heard a lot sweet tunes that mommy and daddy played for you (and them), while you were in your Mommy’s belly. Girl, you have the BEST mom and dad EVER! They loved you fiercely and led us to love you the same. I was afraid to love you, because it hurt my heart so much, but I couldn’t help but love you. You had that effect on many people who knew and loved your mom, dad and you. So you were a rock star before you were even born girl!
As the day came for you to be born, it was the silence that was painful again. As we waited outside that delivery room the anticipation of silence, it crushed me, again. God kept saying, “Trust me.” I will never forget and it will always be my favorite memory, your sweet little but loud cry heard through the door that night. No more silence! We cried tears of joy hearing your precious crying and sang a song of worship to our God, who showed us his love and his miracle in your birth. You were here! And you were BEAUTIFUL, with those huge beautiful dark eyes, chubby cheeks, chubby legs, chubby butt and all and the cutest heart shaped nose!
Those first hours turned to days and days to weeks and weeks to months, with almost no silence. Your sweet little cry, your screams and squeals from seizures, your hiccups, your ever beeping feeding pump, your owlet alarm, your oxygen alarm, and lots of humming and singing to you were heard all the time. It was your norm and I loved those noises, except you having those seizures, especially when they went on and on and on. It was heartbreaking to watch you enduring those. It seemed no amount of meds would stop them and boy, did you have some meds. I have never known anyone to take as many RX as you! The med schedule made my head spin, but your mom was on it! She kept it all straight, all the time!
I am thankful to have been able to spend so much time with you. I loved just holding you and playing with your beautiful dark hair turned to light hair. I loved putting bows in it, trying to get it to lay flat because it always wanted to stand straight up, but you were the cutest thing regardless! I could not get enough of your snuggles and kisses. I think your mom and dad might have wanted to kick me out a time or two. I especially loved our quiet morning time when they would be sleeping and you and I would rock and talk with a cup of coffee. It was the best time of the day!
One of my favorite videos of you is when you said your first word, “Yeah.” You said it so clearly, not once but twice. You said it when your daddy asked you if you were escaping from your oxygen mask. I am so thankful he captured that on video!
As we approached silence again, on February 18, 2018, it was different. You were such a little fighter, big old smiles even with that big old tube. You were A Rock Star that God had other plans for. Those last hours with you were hard and so sweet. Selfishly I wanted you to stay with us forever. Your Dad said it so well in that your last day was your greatest day and I clung to that for comfort. That day God gave me a picture of you in heaven, bright sunny sky, you were skipping along a walkway, so carefree. You were carrying a handful of little flowers, wearing a pretty little white dress, with a head full of dark brown curly hair (not sure where those curls came from) with those big beautiful eyes and the biggest Blakely smile ever. It was a picture that warmed my heart and gave me hope and peace. It reminded me of where you are now, pain free, seizure free, with Jesus, who left us with the promise of seeing you again one day.
I love you forever and always Blakely,