It’s been 80 nights of tucking our sweet six year old into a hospital bed…. Each day I notice her lips turning more blue yet she carries herself with a smile on her face bringing joy to all who meet her. Some days here are hard.

It’s been 80 nights of tucking our sweet six year old into a hospital bed…. Each day I notice her lips turning more blue yet she carries herself with a smile on her face bringing joy to all who meet her.

It’s been 118 days since she was listed for heart transplant. Oaks looked up at me last night with tears in her eyes and said “Mom, I’m tired. When are we going home?”

How do I respond to this? My human nature wants to just cry with her and tell her “Oaks I am tired too, and there is nothing more that I want than for all of this to be over and to be home”. But I didn’t say that because I feel a responsibility to be strong for her and to be her constant positivity even when I feel like I’m drowning inside. My response was, “Oaks this won’t last forever, and we are going to get through this together. Jesus is here with us too”. That’s the best answer I had in that moment but the reality is… I am so tired too. We are completely submerged in this hospital life and the things we here and see even with other patients is absolutely heartbreaking. I post a lot of the good on my instagram… my videos are my therapy here. I want to look back at these videos and one day say wow, I don’t know how we did it but we did and she is thriving. That’s my biggest hope.

I don’t post the countless tears, I don’t post the sweet child next to us receiving chemo, I don’t post the screams from the halls as these kids are getting poked once again…

When I think my day is hard…no. These innocent kids…their days are HARD and it’s not fair.

This life is truly unexplainable and it’s lonely. That’s the truth of it. This isn’t a chapter I would have ever included in our story but I’m not the one who holds the pen, God is.

Our life is on pause, our family is separated, and our beautiful daughter needs a new heart. Sometimes I ask myself, “how did it come to all this?” I still feel completely blind sided and in shock. We are just trying our best to stay afloat and make this impossible situation work. 

I know You’re good God. I know Your timing is always perfect. I am just so tired.

Any and all prayers would be so appreciated. 🙏🏽  Oakley had labs drawn today due to the decline in how she physically looks… this week she will also have another echo to see how her heart is functioning.

Please pray for Oakley, please pray that she stays as strong and well as possible leading up to her heart transplant ❤️‍🩹