Happy Birthday, Jesus!

This past month/season has brought about so many new and different emotions this year.  This is the first year that I have ever gotten involved in reading/doing the advent calendar/activities, and have read so much of the Bible, and truly appreciate and understand so much more than ever before.

This season also brought about new mixed feelings when it comes to Rochelle.  It’s so crazy to think that just one simple year ago, we were in the hospital waiting, hoping, and praying for good news that we could go home and enjoy the new year at home, as a family of four.  As I am growing in my relationship with the Lord, I am realizing that He gave us everything we had prayed for. He gave us healing, and comfort, and time.  He gave us undying strength, love, and affection.  He truly did give us everything we needed, at the exact time we needed it.

One of my favorite verses from the Advent series, that explains exactly how I feel, is when Elizabeth was speaking to Mary in Luke 1:39-45 and said

You are blessed because you believed that the Lord would do what He said.

Over this past year, our daily nighttime family prayers have become more deeper, and more meaningful than they ever were.  We are reminded daily from Luke 1:12 that

God has heard your prayers.

IMG_2632We are forever thankful for the birth of Jesus, and of the angel that spoke to Mary, the virgin, and told her in Luke 1:35 that

the baby will be born Holy, and he will be called the Son of God.

I truly think that Brielle and I both benefited from exploring more into the birth of Jesus, and doing the daily coloring activities, which allowed us to explore deeper into an understanding of what I was reading.  I loved the fun baking activities, and I think our most favorite one, was when we got to donate to Ronald McDonald, Toys for Tots, and the Salvation Army.

We must never forget that time spent with our loved ones making memories, praying, and serving others is what will last forever, and truly that is what this entire season/holiday is all about.

**To learn more about Advent, and which journey I decided to embark on this year, click here.  I was so amazed by how  much time/effort Kara-Kae put into making a printable, that us moms(families) could use with our kids and teach them every day more about Jesus.

Merry Christmas and Happy Holidays from the Johnsons


Deeper than the diagnosis-Guest post

Deeper than the diagnosis-Guest post

I am so happy to introduce you all to my guest-blogger! The family I used to Nanny for, has always mentioned this mama to me.  They bring her up, and all they can do, is smile.  She embodies strength, love, compassion and faith. I couldn’t wait to meet her, and when we did, everything they had said about her was 100% true.

Marty has a daughter named Caseycaseybirth

and blogs about her here.  Casey’s life and journey has been anything but easy but she has the strength and will to keep fighting every day.  Here is a little background about Casey from her website:casey

The official diagnosis of HIE (Hypoxic Ischemic Encephalopathy) was given. Casey has many side effects/complications. Casey has Quadriplegia CP (Cerebral Palsy). Casey’s CP is a stiffness in her arms and legs. The stiffness in her legs has lead to a deformation in her feet as well as a dislocation of both hips. The stiffness in her hands lead to cortical thumbs (pointing inward). Her arms are much looser than her legs, but still very stiff. In addition to CP, Casey also has a lot of her basic reflexes missing. Casey is not able to suck, swallow, gag nor blink. Without the ability to swallow Casey’s air way is in constant risk. Suction equipment is needed to remove secretions, and anything else in her mouth/throat, in order for her to breath. Also, without the ability to swallow Casey can not eat by mouth. All of Casey’s nutrients and calories come in liquid form through a G-Tube. Without the ability to blink, eye safety is another issue. Moisture is supplied often with drops and lube, and Casey’s eyes have to be covered when there is high risk for foreign objects near the eye. Casey also has moderate hearing and vision loss. She is legally blind, but the eye doctors believe with help she can eventually see. Her eyes work, she is just not able to comprehend everything she sees. The same can be said for her hearing. She hears some, and with hearing aids she hears a little better, but the loss is more about her brain not comprehending the sounds than it is about her ears not working.

I reached out to Marty, shortly after meeting her, her husband Tim, and Casey, I wanted to see if she could describe what life is like to everyone else to constantly “worry/stress” about Casey’s life/condition.  Here is her response:

My daughter, Casey, has MANY medical issues. Her condition is considered degenerative (getting worse over time). While her personality is bigger every day, her body is slowly (sometimes quickly) failing. Her list of diagnoses grows and grows. Some of the diagnoses are serious and we do lose a lot of sleep over them and others are much easier to handle.

As Casey grows her lungs are getting weaker. She needs oxygen most of the time, where even just 6 months ago she rarely ever needed it. Putting a nasal cannula on is easy, but what this signifies is very hard to accept. I know that her needing more oxygen means her lungs are getting worse. Her bones are very brittle and she breaks very easily. The bigger she gets the harder it is to move her and position her and she is at higher risk for more breaks. She has skin issues as well that increase as she grows. Her seizure activity and her GI issues are more complex each day.


We have been on borrowed time since Casey was born; this is something we have been reminded of often. We have talked with her many specialists about what our future holds. We know her lungs will fail, we know her GI system will fail, we know her seizures will worsen, we know her body deformities will add to the internal systems failing and will eventually cause her pain.

For some people the end is quick. They may get sick and then in weeks or months it worsens and that’s the end. For some they may have a catastrophic event- a heart attack, a stroke, a big seizure. For others, like Casey, it’s a slow progression that started the day she was born. Some major illnesses speed up the progression, while some of her treatments may slow it down. We are very aware every single day that our daughter is dying. This takes a toll on a person.

On Casey’s good days we do everything we can to fill the day with things we know she enjoys. On bad days, we do our best to comfort her and to let her know she is loved. On bad days, especially when we seem to have many of them, we can’t help but wonder if our time is running out. In the back of our minds we are always preparing for the end. What will it look like, how can we be sure she is not hurting or scared, will we know when it’s time for us to let her go?

Being part of the special needs community has many rewards. I get to meet so many amazing people.

One big down side however, is the loss. It never gets easier to watch someone lose their child. There are some children that remind me of my own, these losses are very hard and are very real reminders that at any day it could be my child.

My husband is my rock. He and I share our hopes and fears for our daughter. Some days are really hard. We kind of take turns pulling each other back up. I cannot imagine going through this without him. We have amazing friends and family that support Casey (and us). On bad days I may not return calls, or I may be a bit of a downer. Our support system never leaves our side or takes it personal if I disappear for a little while.


I have lost a few friends and we have grown apart from some family over the years. It hurts when relationships end, but the relationships that have remained and the new relationships that have grown are REAL. I know that the people in my life right now are in it for the long haul. I value the relationships I have in my life so much and I am so thankful for our amazing support system.



My priorities in life have changed a lot since Casey was born. I used to care about clothes, vacations, nice cars, and a lot of material things. I don’t care about any of that anymore. Now I care about the people in my life. Mostly, I care about Casey and making sure that she knows how much she is loved every single moment. The life I live now is not at all the life I pictured for myself. It is full life, and a happy life, just a very different life than I had planned.




The mothership has sunk

Have you ever felt like you literally couldn’t do ANYTHING? That is exactly how I felt yesterday.

I was woken up at 4am by my lovely daughter calling out for me to “open the door, come in, mommy wake up, etc.” While I tried to ignore the calls for me, I suddenly started getting these really sharp pains in my lower abdomen.  I was like “oh, no, please don’t let this be what my mom had the day before”.  Well, sure enough, it was! I will spare you the details, but trying to fight through the nausea, vomiting, diarrhea, and get ready for work took ALL of my energy.  I slowly got in my car and headed to make my 40 min drive, only to make it half way.  I couldn’t life my arms or my head up anymore and I had to call in to work.  I NEVER do this, and I felt SO bad that I am making it up by working tomorrow.

This brutal 24 hour virus took the LIFE out of me.  I headed back to my moms house, made it somehow back, just to hop into bed and wait and pray for the immodium and pepto bismol to kick in. Of course, my wild and vibrant toddler wasn’t just wanting to lay in bed as she was already wide awake and ready to start her day.  I mustered up the strength to make her juice and let her eat her oreo snacks in her diaper bag, but that was it. I couldn’t be a mom, and I felt SO bad.

Thank goodness my parents agreed to take Brielle for a few hours so I could just rest, knowing that’s what I needed the most.  You see, this virus everything out of  me to even move, or lift my body up at all.  I rested (not slept) for a few hours while they were gone, and then tried to get enough energy to get out of the bed while Brielle was napping to make some rice and apply the heading pad on my lower abdominal area.  Then, the fever started kicking in again, and I couldn’t do anything for Brielle.  It was the moment I knew I needed to head home to Shane to take Brielle for the rest of the evening.

Have any of you heard the song “Jesus take the wheel” by Carrie Underwood? It’s so good, and it was the song I was singing on the entire way home (the longest hour drive of my life).  Shane took care of her and unpacked my car when we got home, and took her fishing until it was time to come home, get a bath, eat dinner, and go to bed.

It was so hard for my Type A personality to have no control over my situation and just let everyone take care of Brielle, but also take care of me.  Thank you to my parents, Shane, and my friends for wishing me well-wishes when that was what I needed to hear the most when I couldn’t even convince myself to get out of the bed to go pee.  I now know that our body can survive on very minimal food, very minimal sleep, and very minimal liquids (well, at least for one day).

Thankful that today I was able to deep clean the house, lysol everything to prevent Brielle from getting sick, washed EVERYTHING that could possibly be washed (6 loads),gave 2 full trash bags to the donation station, and even made it to the gym for the first time in a couple of weeks!

Cheers to good health, good family and good friends. And of course to the Man upstairs! 🙂

Be still, my heart

Never would I thought the day

would come that you and I would be

laying on the floor in our new house.

No air conditioner, no electric, no running water.

But with that, comes no complaints.

You are enjoying running throughout

new house and exploring everything.

Our bodies lay next to each other on our new floor

with wind whistling through the windows.

With faint train noises, in the background.

It’s just you and I.

Our breathing in sync, our eyes locked,

taking in each and every precious moment.

I hoped this moment would last forever,

a smile broke on on my face, as I was truly living.

The words “you’re silly mommy” came out of your mouth,

and for a moment, I got lost in the world of you.

I love you, my sweet Brielle.