PICU

May 18
I wont post this till after. I will wait because I am not sure how it will go. But I had to write. I had to get all this anxiety out somewhere. I got a call from Makenzies Neurologist. She wanted me to come bring a pair of baby leggings to a sweet little girl in the PICU at PCMC. How could I say no? So many people helped me. Talked to me. In their own grief or hard ache. It was the least I could do.
To know another Mum is learning of this new disease. Learning of her daughters new life. Trying to understand it. Trying to live it.
Since she called yesterday asking me to come I haven't stopped thinking about this unknown Mum. This unknown little girl. This family. Who's world has been turned upside down. Ill be going to meet them today. I bought a new pair of leggings last night and bought a bow to match. Its a bow just like my favorite one Makenzie had. That red one. This one is purple. I packaged it and included a picture of Makenzie. Mainly because I want her to know how hard I have prayed for them last night and that I know there is at least one angel who will be watching over her. I don't know what life this little girl will be living. She has SMA type 1. That's all I know. I have thought about what her parents are thinking. The surgery's and treatments they are now becoming experts at.
Its all coming back. Those words that I never thought I would ever really understand.
I could understand doctor lingo with the best of them. I knew those machines, what every number meant. I knew about procedures and results. I knew about side effects and different outcomes.
I pray for this family. For every family that knows this. No matter how new you are to it or how advanced you are in it. I'm so sorry. I'm sorry you are living this.

Its been hard to concentrate. I have been trying to not focus on what I'm most afraid of.
Going into that area. Through those double doors. Passing the nurse station. Passing the rooms. Hearing those sounds. Hearing the beeps. Being in the same hallway we learned the fate of her life. Seeing those people who helped keep her alive.
Passing the room Makenzie spent 1/4 of her life. Passing that room that was my home. The room that kept her with me. Seeing the chair that I held her. The same room, the same chair that she took her last breath in my arms.
I keep telling myself over and over that its not about me. Its not about Makenzie.
Its about this little girl. This 8 month old little girl. This precious gift God has given the world. This girl that is here for a reason and a big purpose. This little girl who's life will end too soon. I'm honored to meet her.
I can do this.

PS. Happy 22 Month Birthday Makenzie Rye. 

I think about you every second and love you more and more everyday.

Thank you for being mine.

May 19

I probably should have wrote yesterday when I got home but I just couldn't. I couldn't do anything. I haven't been that emotionally and physically exhausted in a while.

Waiting in the lobby was the hardest part. The anxiety and remembering was so overwhelming.  I had trouble finding Kenzie's doctor so I waited a little while. I tried to stay focused on why I was there. But that only lasted a few minutes. I was a mess. Walking the halls and sitting in the lobby crying. It was that lunch room I ate in for 27 days. That chair was the chair I was sitting on when I was telling -- about the latest news. That's the wall I stared at while they did shift change constantly asking Ryan what time it was (that hour never went fast enough).  I kept looking at those doors remembering the day we walked out of there without her. I missed her so much I couldn't breathe. I felt a little silly when I found her doctor because I was doing that huff huff cry.  She was very sweet and calmed me down. I went to the bathroom to try and get those red eye and splotches to go down and we were on our way up. 

Turns out. I knew this little girl. Well I know her through the blog world.

Her family is such an incredible family. You might have heard of them.

The Coleman Family.

I got the chance to meet the beautiful little Maggie. Before we even walked through the PICU room doors my whole outlook changed. Maggie is just 2 doors down from the room Makenzie spent her last days. I walked in her room and was overwhelmed with love for this little girl. Her Mom and Dad had just left so Dr. and I hung out with this little angel for a bit. She had just had her GTube surgery that day. I couldn't stop looking at her button. I kept seeing Makenzies belly and that same button in her belly.

She was so sweet and had the most beautiful big eyes. I bought a special pair of leggings for her so I put them on her chubby little legs. I joked a little about how she had baby leggin legs. Since Kenzie was skin and bones nothing ever fit. These purple polka dot leggings were perfect on her beautiful legs. It was so special to touch her toes and fingers.

Maggies nurse turned out to be our most favorite nurse. I gave her the biggest hug as soon as she walked in. She was her nurse a few times and even when she didn't have Kenzie she would come check on her. She was the nurse we asked to be with us when we took out Kenzies breathing tube because we knew how much she cared for her and that she would make sure she was as comfortable as possible. She was there to help us bathe her for the last time after she passed. She cried with us. 

She was so sweet and remembered so much about us- even HARLEY. 

We left little Maggie so she could get a bit more comfortable and go to sleep. 

I talked to Dr. for a bit longer. Then I left.

It was such an emotional experience. The hurt of missing Makenzie to the joy of meeting this incredible girl.

I ache for this family because they know this miss. They lost their little Jonas just a few months ago. He to had SMA type 1 just like Maggie.  I cant imagine. The strength, the love, the bravery, the heart this family has. I am so inspired. I love them.

Please pray for them, for the road they will have to repeat with Maggie.