Happy 6th heavenly birthday, Lamar!

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Image credit here

After the first couple of years after we had the abortion that ended Lamar’s life, we didn’t exactly know how to celebrate his life, or even if we were able to, since we decided to end it.

I know that was a hard introduction to his birthday post, but I wanted to be real and raw with you guys.  I am trying to find the “right or appropriate” words for this post, but at the end of the day, it has to come from my heart.

Lamar was a very active boy in utero (as I am sure he is in heaven), and it really broke both Shane and I to pieces when we had to make that horrible, final decision to end his life.  At the end of the day what we now realize, is that it came down to fear. Fear of the unknown and all of the uncertainty that surrounded his life.

Let me back track a little for some of y’all who may be new around here.  Our first pregnancy was our son Lamar Grant Johnson.  He was diagnosed with Full Trisomy 18, and we were told from the specialist that he would most likely die during birth, or if he happened to survive, he would be needing 24/7 round-the-clock care and would only live up to 1 year at max. The specialist said ultimately it comes down to what kind of life would he have, and they said it would not be good, and that termination would be the best option for us.

Wow if Shane and I could only back track to that day, in that small, brown, terrifying office when we got this news–and changed the trajectory of that conversation.  We would have brought in our own statistics (as we did in Rochelle’s case) of the amount of children that lived (and thrived) with Full Trisomy 18. We would have told them that NO matter what, we were choosing LIFE (and not death) for our son, and that we wouldn’t listen to them try to pressure us to make any other decision.

But that’s not the route we chose, and we have to accept that fact.

Lamar holds a VERY special place in our heart, and we know that Brielle and Malachi (and all three of our adopted children) will forever remember him, even though they never got to physically meet him.

It took a long time for us to understand that God forgives us for that wrong decision and that even though we can never change the outcome, we can celebrate and honor his life and tell people about him and share his story.

We are not perfect, we have flaws, and sins (some bigger than others) but we are loved, forgiven, and redeemed (and for that, we are forever grateful.)

So we celebrated by getting a balloon, singing him happy birthday, eating cake, saying prayers and wishes, and celebrating his life.

We love you so so much Lamar and cannot wait to see you one day!

©2018 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

 

Rochelle is 2!!

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This year, I am doing better, with knowing she is exactly where she is supposed to be.  It’s interesting.. this thing we call grief.. it’s an unending roller coaster of ups and downs, and it’s a ride so many of us are on. I am happy to say right now.. we are on the “up” side.

This year I still kept with tradition and did #pinkforRochelle on FB for all of our friends and family to participate in a balloon release in honor of her name, or just wearing pink/doing something in her honor.  It was so nice to see so many friends/family participate!

We were going to do our own balloon release, but God had other plans and it was POURING the entire day of the event, so we cancelled it and just did a craft with all of the kids with the balloons and made the most of her sweet memories.  Now that we have 3 boys (who didn’t know our sweet precious Rochelle) we got to tell her amazing life, battle, and story in those 2 months and 1 day, and how Brielle will forever be bonded to her baby sister (she still talks about her quite often).

We love you Rochelle Elaine Johnson ♥♥ Happy 2nd heavenly birthday!!

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

 

Rochelle turns 1!

Rochelle turns 1!

On this day, exactly one year ago,

life as we knew it, would never be the same.

Today is the day that we had in our mind,

from the moment you were diagnosed.

Statistics showed that most babies with Trisomy 13

don’t live past their first year of life.

We knew you would be different,

that you would be stronger, a fighter.

You gave us the strength day in and day out,

to care for you, and pour our love on you.

We knew from the moment you graced us

with such an amazing “one push” entrance,

that you were here to take us on a wild ride.

Spending those first two weeks in the NICU,

not knowing what was going to happen,

or what our future was going to look like,

every single time you looked in our eyes,

you gave us the answer.

You gave us strength, honor, and courage

to do what was right, and best for you.

The moment you finally were able to come home,

was hands down, the best day ever.

Allowing your big sister to love on you,

 teaching her at such a young age,

what it means to have a “sick” sister,

and  to truly cherish all of the moments she had with you.

Your labored breathing, intense stares, clinched hands,

are just some of your most amazing features.

Though many days of your short-lived life

were spent in hospital rooms, you were never alone.

Being held was hands down, your favorite (and ours as well).

Hospital rules, lack of seating and accommodation,

couldn’t stop us from holding you.

If you were here right now, your sister would be in bed,

Mommy and Daddy would both be staying up

discussing plans to take you to all of the hospitals

and the doctors tomorrow to show that you

are more than a statistic.That you beat all odds.

We would have made your night time feeding already

and made you as comfortable as possible while holding you.

We would be staring at God’s precious gift to us,

and thank Him for allowing us another day with you.

Even though we know you are now in a better place,

celebrating with Jesus, and your sweet older brother Lamar,

we can’t help but just want one more moment with you both.

Thank you for showing us how to stretch and expand

our love in ways in which we never thought imaginable.

Thank you for being our daughter, our blessing,

our chromosomally enhanced child.

We will continue to fight for other children,

like you and your brother.

 We will speak for y’all, every single day,

and continue to honor and praise you both.

We love you SO much and miss you everyday,

Rochelle Elaine Johnson.

R.I.P 11/06/2014-01/07/2015

Our perfect Angel
Our perfect Angel

Hope-9 months later

Hope-9 months later

Have you ever had

that feeling that there was

something more? Something

to look forward to? Or know that

you can now hold your

head up high again?

That can only be defined as

Hope.

Hope for a brighter future.

Hope for a deeper faith.

Hope for a stronger love.

Today marks 9 months since Rochelle has passed away, and the only word that fits perfect is hope.  I now, have so much hope for the future (our future as a family) and I can now see that there are so many things to look forward to, and that doing the things that I love most in life are just as important as doing the things that Shane and Brielle love to do.  Thank you Mom, Caitlin and Adriane for talking to me about Rochelle and never closing the doors.  So many people are afraid to talk about her life, and why yes, I may still get emotional when I talk about it, but there is nothing more important than my kids and I will open the doors to any questions/concerns/ interest any time.  I love educating people on Trisomy 13 and 18 and other rare genetic disorders that could potentially happen to you or your loved ones. Everyone thinks that they know what they would do, being put in a certain position, but you never know what you do, unless you have walked in those same shoes and can honestly feel the same struggles someone else had been through.

Just please remember to never judge a book by it’s cover.FB_IMG_1439480090162