Thursday, May 19, 2011

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.
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.

11 comments :

Lisa said...

What a blessing you are. I know that God gave you the strength to go back there and face what you did. I know that the moments you spent with this little girl touched your heart and encouraged her parents. Life can be tough, but I believe that God's got this... He has a plan for you and he is taking such good care of your little girl until you are reunited with her again. I will continue to pray for you. God bless.

brigette said...

Oh my goodness Kendra how amazing you are!! I love reading the Colemans blog to... it was so sad when Jonas passed away. I pray this sweet little girl doesnt have to suffer. They are an amazing family just as you are!! You teach me and inspire me daily!! Much love

Emma said...

I have followed the Coleman family blog since a few months before Jonas passed...another incredible family doing so much. They are certainly in my thoughts and prayers always.
Kendra, wow. What an emotional journey that must have been for you-but you did it! Kenzie will, once again, be so proud of you. You faced your fears to make someone else smile, yet again....so awesome! You continue to be in my thoughts and prayers and I hope in some way you found yesterday helped your journey, knowing you and Makenzie are still reaching others, her story is still out there, touching others people lives and bringing smiles to other families!
Love and hugs, Em

Rafahi Family said...

I will post it again--your strength is unbelievable! I have been praying so much for you and your husband. I know he does not give any of us more than we can handle, but this experience--I am not sure if I could do it. May God continue to bless you and your family!

Shawna said...

Oh Kendra, you are wonderful. That is all I can say -- reaching out to this family despite the pain going back caused you is a wonderful thing. Thank you for letting God use you to bless others.

♥ Stephan & Michelle & Ashlyn ♥ said...

Kendra, I remember shift change at the NICU with Ashlyn, that hour was the worst! That is so amazing and sweet what you did for her! I think its crazy how things work out that way and how you knew her. I needed to read this. Stephan and me have been talking about going to the NICU to visit Ashlyns nurses, and donating preemie clothes, and blankets. I never took a single picture of them and they were there for us so much! But I didnt know if I could go back. But if you can do it then I sure can! Thanks for just being you! Your always in my prayers, and now little Maggie and her family will be to! We need to hang out maybe Caitlin and you and I can do lunch or something? Thanks for donating to March Of Dimes for us means alot!

crystal said...

Praying for you and praying for sweet Maggie and her family. My heart breaks for your family and the Coleman family. I know that God is in control of everything and He can heal this precious baby. Sending my (((HUGS))) your way!!! Maybe this is the start of your ministry. Being there for other moms who are going through what you had to go through. God uses all of us for His purpose!!! You inspire me more and more each day!!!

Tara said...

((HUGS))

Ashley said...

You are a brave mama! That is an incredibly hard thing you did to go back. My parents and brother have delivered every bag we made for Preslee's Birthday to the Picu for me. I'm not ready to go back. When you wrote about walking through the double doors, hearing the beeping, etc. that was enough for me. I'm proud of you for making that trip!

Breaks my heart that the family has already been through it before. We'll be praying for them as well.

Anonymous said...

Oh, my sweet friend. You know already that things happen for a reason.....you were educated about loss and love in a most heartfelt manner after the loss of your Kenzie. But in being educated, you have helped this little family in their sorrows and heartaches. "Now abideth faith, hope and love, but the greatest of these is love." Thank you for being you and for showing us that even after our trials, we can still love and share out love with others. You showed a great deal of faith, hope and love by being willing to take your heart, your soul, and your love to this little girl yesterday in the place where there are so many memories, of which some are very very hard. I admire you so much and love you more than words can say right now. Auntie M

The Puffe's said...

Hi, my name is Lindsey, and I have been reading your blog for a little bit now. I am sure you get new readers all the time, and similar responses, but I just wanted to say what a sweet little angel you have. I wanted to tell you that even though I don;t know you, your blog and story has truely touched me. I am a mommy of 2 sweet little boys, and reading Makenzies story makes me want to be a better mother every day! In one of your posts, you wrote that if anything that is what you hope this blog does...and it has!! I cry...actually bawl sometimes reading, you are such a great writer, and you really are a role modle. You guys are in my prayers always now. My son just had his 2nd birthday and we got him a ton of balloons, and when he was done playing with them we sent them up for Makenzie and all the other little angels! :) Thank you for your blog. I just wanted to post a comment so I wasn't some creepy blog stocker! :) Bless you and your sweet family!
Lindsey

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