11 months later..Magic

11 months later..Magic

From the moment you entered this world,

with your blue-tinged fingers and toes,

God instilled life into you.

He gave you the strength to breathe,

to cry, and to know when you were hungry.

The ability to experience pain,

but also comfort and joy.

The courage to speak ,

through your bold dark eyes,

and your slow twitching head,

when you got so mad.

The ability to know love,

on such a deeper and powerful level.

Your body responded so well to touch,

and to voices that you recognized.

You also loved to be held all the time,

and cuddled up close to someones neck,

in the knee-chest position.

Through the many trials and tribulations,

you continued to defy all odds placed against you.

You created a new image for Trisomy 13 babies,

and you showed people to look deeper than your “label”.

You showed me how to take my label of a “nurse” off (at times),

and realized what a precious gift from God I had in my arms.

You were the rock,

when everything was falling apart,

and you somehow drew our family closer than ever before.

The day you left to go be with your brother,

was unlike no other.

I have seen patients pass away before,

but nothing like yours.

You were in my arms,

and I never wanted to let you go.

Yet, it was like pure magic.

Spirit drifted out of your body,

and I all of the sudden

got this overwhelming feeling

that you were gone.

That’s the moment,

your Daddy and I knew,

life would never be the same.

11 months have passed,

yet it still feels like it was yesterday.

We will miss you forever Rochelle Elaine Johnson. 11/6/15-1/7/15


 ©2015 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

10 months since..

10 months since..

This month I believe the word to describe how I am feeling now is clarity. I now have more clarity than ever before, more understanding of what’s to come, and just more desire to just really help others and listen to others.  I feel like if I can help one person and/or family by sharing my story, my precious angels, and what all I have been through, it just may make things a little easier, or at least give them hope when they feel like there is none left.

Yesterday as I was driving home from celebrating Rochelle’s first birthday, I looked up and noticed the sun was setting, and this has become one of my favorite things to look at and admire this past month. I actually notice now all of the different shades of greys, blues, pinks and whites in the clouds and the shapes and textures,  that just seem more bold than ever before.  I notice the crispness in the trees, and  all the different hues of green, orange, and and brown. Photography has definitely helped me describe my feelings through the beautiful pictures, and I love it.

My mom came up with an idea on what we should do to carry on her name, and to really help other babies that have been in her similar situation. It just makes you realize that even the most simple thing can seem to make the biggest difference to someone, especially those who have been in our shoes. I am SO excited to share what we have planned, as soon as is comes to pass. Please pray that our thoughts/ideas come true and that our hands can help just one baby in the NICU, who is right where we started, with their parents sitting and praying for hope, recovery, and healing.

I must never forget that God’s working miracles in our lives everyday and even though we cannot see them or protect them from happening,  I really want to make sure my heart and mind remain open at all times for anything good, or bad. I can’t believe just yesterday we were all together as a family celebrating, just as we would if she were here with us. In her honor, I will share some of my favorite pictures from our beautiful day.

Brielle writing in her sisters birthday card.
Brielle writing in her sisters birthday card.
SUCH a beautiful photo that could never be planned or re-created.
SUCH a beautiful photo that could never be planned or re-created.
Helping mommy with her cake!
Helping mommy with her cake!
Rochelle is 1!
Rochelle is 1!
Beautiful still photo of Brielle and her cousins.
Beautiful still photo of Brielle and her cousins.
My beautiful prayer before my balloon release
My beautiful prayer before my balloon release
Stunning.  Hope you love them Rochelle!
Stunning. Hope you love them Rochelle! #pinkforRochelle

Chromosomally Enhanced-Re-post

Chromosomally Enhanced-Re-post

Looking back at this blog post tugs at my heart so much.  I did not know that the day this was posted, was just two days before we would have to say good-bye to our precious baby girl.  I miss her so much, but I thought I would share with so many of you who may be going through the same struggles as we(me and Shane) once were.

Here is the original post:

We have two living children, and one angel in heaven, our son Lamar.  When we found out Lamar had Trisomy 18, it was our first time getting pregnant and we never knew any of this could happen to us as we are both in our early 20’s. We did so much research on it, and when we lost him on July 14,2012 it was the hardest thing we had ever had to deal with–well so we thought.  Fast forward two years we had a healthy baby and the genetic counselor told us we had a 1% chance of ever having a baby with a chromosome disorder again.

On June 26th, 2014 we found out we were carrying yet another baby with a rare genetic condition called Trisomy 13. This condition happens in about 1 in every 10,000 newborns.  It is where there are 3 copies of the chromosome 13 instead of two (the usual).  When the extra genetic material is attached to the extra chromosome it is called translocation.  Our genetic counselor stated there was no translocation.  In other words, this means that it did not come from Shane or I (inherited), instead it occurred when the sperm and egg formed the fetus.  With this condition the babies statistically do not live past birth or the 1st month, and if they do, they usually pass away before turning 1.

Knowing all the information that we do know about Rchelle’s condition, when she was born on November 6, we didn’t know how to act. All we knew was that whatever happened, we planned to show her just as much love as Brielle (her older sister).

We chose to bring her home from the NICU after staying in there for 2 1/2 weeks as she was stable and doing great on oxygen(for comfort measures due to her lungs being small in size). She also has a feeding tube in her nose that lets her grow and be at home before needing the feeding tube surgery (g-tube).

No, it has not been easy by any means having to deal with a feeding pump, checking the placement and the residual of the NG tube before each feeding, making sure her oxygen concentrator stays at 0.25L (especially with an 18 month old who likes to change the settings), and to make sure her dressings/tubings stay on her face and don’t get pulled (Shane accidentally found out how easy it is to pull out the NG tubes the hard way–twice), and just monitoring her for any minor changes she may be having, but honestly we wouldn’t trade it for the world.

We try not to think about how long Rochelle may have on this Earth, but instead spend the time cherishing our sweet perfect girl. There is a small percentage of kids with Trisomy 13 that have lived long lives and had successful surgeries, and that is why we stay hopeful.  Our baby girl is such a fighter and the doctors at the hospital told us she isn’t even suppose to be living with the battles she has faced so far.

All the prayers are truly appreciated that have been sent to Rochelle.  She is an amazing, gifted, precious, chromosomally enhanced girl that we can’t wait to share with the world. To all the moms out there who have a chrosmomally enhanced child,  know that God put them in our lives for a reason.  Cherish each moment,  and stay as strong as you can,  they need us and we need them.
Here are a few pictures of Rochelle 🙂

One month and looking so cute!
Sisterly time
Daddy’s baby girl
photo shoot time 🙂
Wide awake
Looking so precious
First day of life 🙂

This blog was originally posted as a guest blogger over at www.momquery.com.


Ashes represent our broken dreams, our failures, our disappointments and our hurts -Joel Osteen

This quote sits so near and dear to my heart.  When you have lost someone who is so important to you; whether it be your family member, or your friend, you lose something inside of you that you always saved for just them.  That’s what lingers with us after that person has passed away, is ashes.

Ashes from their smell, their giggle or their cry, ashes from a bond that you knew was hands-down unbreakable.  Ashes from knowing that they are being called to be with God and serve a greater purpose in life, but our selfishness wants them here with us, for so much longer.

This is what was left of me when I had lost Rochelle.  It seems that beauty came from Lamar with the birth of Brielle and her “boyish ways”.  She has his heart instilled in her, and I know deep down that they would be very similar if he had the chance to be here with us.  After we lost Rochelle, it was as if I couldn’t see past the ashes and find beauty.  In Isaiah 61:3, it reminded me that you can always find beauty in something.  God called for Rochelle to be with him, and he gave us the ability to see how much we really have in life (a healthy toddler, a good marriage, good friends, good family, and Him).We thought we lost everything all over again, yet we just had to look at our surroundings a bit deeper, and cherish the moment we are in.

Not all days are great, but I am so thankful to be able to start finding the beauty again in life and I am hopeful to see what God has in store for us!