Happy 4th birthday, Lamar!

Today marks our son, Lamar Grant Johnsons 4th heavenly birthday.  We love him and miss him dearly, and can’t imagine how he is celebrating up in heaven.  We know that he is celebrating with his baby sister, Rochelle and I am sure they are having the TIME of their lives.  We took the night to say prayer (like we do each and every day over Lamar and Rochelle), do a balloon release and celebrate with some cupcakes!  Please give all your babies 4 extra kisses or hugs tonight as they go to bed! That’s exactly what we would be doing!

 

IMG_5969

Birthday Celebrations!

IMG_5971

Our big boy turned 4!! 🙂

IMG_5972

Precious sweet balloons

IMG_5977

His balloons flying high in the sky

IMG_5984

His footprint is always on my heart

©2016 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

Sleep

I see you staring at them,

those bags under my eyes.

It may look like it was from not sleeping for one night.

Little do you know,

those bags tell a story.

Of a twenty-seven year old woman,

who has aged so much in the last five years.

A woman who has experienced so much loss,

that sleep is non-existent anymore.

A woman who prays that someday,

sleep will come back.

A woman that closes her eyes each night,

says her prayers and counts her blessings,

and if she happens to get into that deep REM sleep,

she is only to be woken up from a terrible nightmare.

The ones that she wishes upon no one.

A woman who wishes that one night,

she just might be able to see her babies again.

So many people have told her,

that angels can speak to you when you are asleep.

She just keeps waiting and hoping for that day to be true.

Just to get to see them one more time,

growing, laughing, and playing,

and knowing that they are right where they need to be.

Those bags under my eyes may never go away,

but know that I am okay with that.

Sleep will come back one day,

it may happen sooner, or it may happen later.

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

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 🙂
Love.
Wide awake
Looking so precious
First day of life 🙂

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

Ashes

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!

ash