Day of Freedom, Part 2

Lauryn, Malakye and I walked into the hospital and signed-in at the guest registration desk for what we hoped would be the last time.  Malakye and Lauryn look all calm and sweet here, but for the past 24 hours, they had been beside themselves with excitement.  They would be calm and mature for a moment and then they would start to get louder and louder.  It was actually very funny to watch.  It makes me smile to remember it because it shows how close the children are and how much they support each other.


Entering the hospital on Day +27, hoping for Naomi to be discharged!

I called them the rescue team.  Malakye liked to say that Naomi was the damsel in distress in the third tower and he was her knight coming to rescue her.  I love that Micayah got to be her donor-hero and and Malakye her rescue-hero.

Lauryn was so excited to play dollhouses and swing with Naomi again.  She could not wait to explore the House together and play in the backyard.  I do not think I fully appreciated how hard it has been for Lauryn to lose Naomi as playmate and sister for the past 6 months.  There is so much more to be said about that, but I will sum it up by saying that I love how my girls are best friends.

The iPad Naomi has in her hands here was property of the hospital.  It was attached to the bed and would be left behind when we left, hers to use while she was an inpatient.  While there, she initially had her face practically glued to it playing Temple Run.  Overtime, she played a few other strategy-type games, but eventually became bored by computer games.  I thought it was interesting that she returned to playing Temple Run for the last 24 hours of her stay at COH.  It seems she was filled with anxiety and needed that release.  In a moment of silliness, I said that COH was the Temple and she was trying to run out of there, but the monkeys kept chasing her to keep her there…..


After everything was packed and the iPad played for the last time, she was READY TO GO.  There is actually so much more to the story than that.

Her case manager came into the room and told me that Naomi’s final prescription was ready downstairs.  We got permission to run down there while waiting for doctors to do final rounds.  On our way down there, Naomi said that her legs were getting tired from walking too fast so we took it a bit slower while still rushing.  We really wanted to be back in her room when the drs. started rounds.  Her room was on the corner and was often first.

We easily got her meds and quickly returned to the room.  Upon entering the room, her discharge summary from the case manager was on my backpack.  Naomi thought that meant that we could leave NOW.  I told her that we still needed drs to round and for me to sign paperwork with the nurse.

Naomi sat on her bed, but around her the room had nothing personalized on it – no more of her pillowcases or blankets, decorations on the entertainment center, or pictures made by her on the wall…  the lion was still on the window though because I could not erase it.  Just the thought of doing so made me want to cry.  We also left the flower garden we put on her window to the nurses’ station.

She tried to play games, but started to become very frustrated and whiny.  She practically slammed the iPad down onto the bed and said, “When WILL the drs. do rounds?!? I WANT TO LEAVE!”  The anticipation was clearly too much….  Thankfully, about 2 minutes later, while I was still trying to decide how to pass the time, the drs came around the corner and started to put their gowns and masks on.  It was comical and made me chuckle.  There we were with the wagon loaded, nothing of ours in the room, Naomi dressed to leave, and the drs. still wore their masks and gowns!  They talked with us about her lab reports for the day and we ironed out final questions I had about her care at home.  I was pleased to learn that they cancelled her Thursday clinic appt. and merged it with Friday’s biopsy appt.  So, now we only need to go to the clinic on Friday and get both done at the same time giving us Wednesday AND Thursday OFF!

As they left, Naomi followed them out of the room.  She danced around the nurses station a bit while I talked with the nurses and CL specialist.  The CL Specialist came and sat with the children so that I could take the wagonload to the van and move the van closer.  I heard her trying to get Naomi to dance with her.  Naomi would not…. I think knowing anything is the “last” is too hard for her….

I left the wagon at the registration desk in the lobby, ran to the parking lot (my stamina really improved over these 33 days!), drove the van back to the front of the hospital and paid $4 to park in valet right out front.  Never before willing to spend $4 to park up front, I made many runs between the parking lot and hospital.  But now I wanted it parked close for Naomi.

After loading everything into the van, I returned the wagon to the registration desk and went back upstairs to Naomi’s room.  I never entered the room though because Naomi was sitting on the rocking chair right outside her room.  While we were preparing to leave, there was a Valentine’s Day party going on in the family room.  The nurses and CL specialist kept trying to get us to go join.  I was very willing since there were chair massages for moms!  Malakye and Lauryn were also very willing because there was food.  I asked if we should wait at the party for the nurse to sign paperwork, but Naomi flat out refused to go.  I was disappointed because I could have really used that massage.

The CL Specialist had given Naomi the rest of her Beads of Courage.  Naomi was hugging the bag that held them.  She was also hugging her Merida bow and arrow.  It was all so fitting…  the Merida bow was the device by which she fired arrows at anyone and everyone who would walk into her room; it did not matter if you were there to clean the room, feed her, or play with her.  Even her dr. got some arrows!  As for the beads, she earned every single bead on that string with all she has endured; every needle poke, surgeries to install catheters, biopsies, being woken in the middle of the nights, having more meds added to her schedule, transfusions administered, chemo, being in isolation….


On the rocking chair beside her door.

This picture of her in the rocking chair makes me cry because what happened here was so sad and powerful.  At this moment, it became ALL about her and helping her process leaving.  Her anticipation to leave was so great that she sat in the chair and did not know how to act.  The CL specialist was standing right there.  Her and I exchanged glances each knowing that Naomi was struggling a bit.  I asked Naomi if we should bead the last of her beads onto her string of courage.  No.  I asked if she wanted to dance with Joanne.  No.  I asked if we should take a walk to the playroom.  No.  I joked that I could still get my massage if we went to the family room.  No.

She started to cry hard.  Joanne went to find the nurse so I could sign the discharge papers and get out of there.  It was obvious that leaving was all that would help Naomi.  While she ran off, I picked Naomi up off the chair and sat back down on it with her in my arms.  I rocked her and whispered into her ear that all these things she was remembering helped her while she was here and it was ok to have enjoyed them.  I told her that she was getting better now and we could move ahead.  We did not need to make final rounds to the playroom, family room, or even look at her beads and talk about them.  I could see it was all too much for her right now.  It was incredibly heart-breaking.  She has been through so much and had been so strong, and finally she broke down.

The nurse came and we signed the forms very quickly.  The nurse ran off to tell others that Naomi was leaving and all the nurses and doctors and specialists all formed a tunnel for her to run through.  She sat on the rocking chair, around the corner from where they were forming a tunnel for her, and she still would not move.  She just cried and buried her head into her knees.  I tried to get her off the chair but she would not budge.  I bent down and said, “This is the moment you have been waiting for months to happen.  Your transplant is over and you are FREE.”

She looked up at me with her sweet face and said, “I don’t want see them at the tunnel because it will make me cry.”  I told her that it was ok to cry because they had become friends and saying goodbye to friends is hard sometimes.  I offered her my hand to run through the tunnel with her.

I never intended to run through the tunnel because I felt that this was her moment, but I am honored that she accepted my hand and shared that moment with me.  She finally smiled through her tears and walked around the corner towards the huge group of staff that gathered for her departure.  Malakye filmed the tunnel as best as he could while trying to take pictures with the other hand.  After she was through the tunnel, I could tell she was afraid to turn around and say goodbye.  She froze facing the door knowing they were all behind her.  I gently encouraged her to turn around and wave.  They flooded her with hugs.


Once through the tunnel, she froze afraid to turn around and say goodbye.

As with any hospital stay, there are things that were discouraging and unpleasant.  There were moments of frustration about policies, especially when it resulted in Naomi’s discomfort.  But the nurses in Hemoc must love their jobs and the children they care for.  I find it fascinating how many people stopped into her room within 24 hours of her discharge to wish her well and say goodbye.

I think she is special because she is my daughter.  It is obvious that many others think she is special just because she is.    On Wednesday, the day after her discharge, I had to call the nurses’ station for some clarification regarding the hydration that I administer to Naomi through her IV while she sleeps.  Having talked to two nurses on that call, they both mentioned how much they liked having her as a patient and how they feel a loss with her having left and miss her.  I can understand.  Now that I have her “back” and am watching her play, I see how much I missed her while she was sick and transfusion dependent.  I see how her illness changed her and I am seeing glimpses of her playfulness and childhood returning.  I cannot wait for the day her Hickman catheter is removed…. that is the next big thing on my mental map.  Then she will be just a child, again.

One thought on “Day of Freedom, Part 2

  1. Pingback: Day of Freedom, Part 3 | Pride of Naomi

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