A different type of Thanksgiving It is hard to believe it is already Thanksgiving. As our new “norm” seems to be, it has been a whirl wind week...that all began last Thursday. As Marc and I began to talk about what we were going to do for this week our plans quickly evolved and changed. Emma is out of school this week for Thanksgiving break which meant Marc would need to take the week off as well. Emma wound up getting sick (again) with a high fever. Despite the fact her fever was going down she could not be around Chase for 7-10 days because of risk of transfer of the virus. I had not seen my beautiful Emma in 3 weeks and my heart was aching for her. I spoke with Marc and threw out the idea of me taking Emma on an “adventure” knowing that she would not be able to be around Chase during the week. I wanted her to remember a time during this journey that was special, a time where she smiled, a time where she played and had fun with her mommy. I did not want her to look back at these times and remember the fact that I was not there as much as I wanted to be. The idea quickly evolved, we had a trip to Texas to go to Md. Anderson for Chase’s annual check up last July that we never made it to because of Chase’s relapse. Usually, we would have let the travel vouchers go. We have done it time and again, Chase gets sick and we have to cancel. This time we decided to do something different. We used all of the vouchers to book a trip for Emma and I to have some mommy and Emma time. My only requirements for the trip was that I did not want it to be somewhere that we usually go together as a family. I did not want it to be a reminder to Emma that we were once again separated. After a lot of thought Marc came up with the idea of Emma and I heading to San Francisco, a short plane ride but lots of fun things to do with Emma. At first I was very excited thinking of spending one on one time with Emma, making memories and being on an adventure. It was not an easy decision to be without Chase but I knew that Marc and Chase needed some time together as well. If I am around Chase clings to me...and he needs to cling to Marc as well. I did not want it to be about me “leaving” Chase but rather me “going” to Emma. This time has been beyond difficult for her and she is my baby too. She is a little girl that needs her mommy, and I am not there like I would like to be. Three years ago I would have been to afraid to go anywhere without Marc. I would have never gone anywhere without Chase...but now we make decisions as they come. None of them are easy decisions, just the best decisions we can make at the time. I am no longer afraid....at least not of the things I used to be afraid of. Marc and Emma came up to Phoenix on Saturday and Emma was not allowed on the floor so Marc and I did the trade off. My heart ached as I gave Chase a hug and reassured him that I would be back before he knew it. As I walked out of the hospital my heart sank into my belly and tears welled up in my eyes. I had to quickly change modes so that I could be the mommy I want to be for Emma. I ran and gave Emma a huge and hugged her till she screamed “momma, I know you missed me!”. The first night was grueling and as the minutes ticked by I found myself watching the clock wondering how Chase was doing, how he was feeling, how did he do taking his meds etc. As Emma drifted to sleep in my arms my anxiety grew and I felt like I needed Chase in my arms as well in order to fall asleep. I tried to force my eyes closed and tried desperately to sleep but I just could not shake the feeling of panic. I kissed Emma and told my mom I had to walk to the hospital just to watch Chase through the window. I wanted to know he was sleeping, I wanted to touch his head....I wanted to swoop him up and rock him on the rocking chair....to drift off to sleep in each others arms. My heart raced as I walked through the halls. When I got upstairs I put on a mask and a gown hoping Chase would not recognize me if I walked in. I peered through the window and saw him sleeping. I slowly crept in and I am sure Marc thought I had pretty much lost my mind dressed in disguise wanting to simply touch Chase. I put my hand on him, gave him a stroke down his back and stood there...not knowing what to do...wanting to swoop him up but knowing it was not fair to Chase. He was sleeping, he was safe, he was with his daddy...it was me who needed to let go...needed to give up control....to Marc who takes amazing care of him....to God allowing him to work in our lives. I touched his back one last time and said goodbye. Knowing how it felt to be so close to Chase, but stop myself from running over to his room let me knew that I too needed to take this time with Emma. Focusing just on her, not thinking about running over to Chase’s room....stopping myself from having the ability to do so. I took a breath and let go.... I noticed an immediate difference in Emma when she woke in the morning she was sad and had tears in her eyes. She said “I just want to see Chase”. She does not understand why she was able to go see him before in the hospital and is no longer allowed on the 7th floor BMT unit. I tried to explain it to her a million different ways but she simply does not understand. All she knows is that she is desperate to see her brother and WANTS HIM. On our way to San Francisco Emma talked about Chase, talked about missing me...she needed those moments to be heard to know that I am listening. We have enjoyed our time here in San Francisco and I have tried to make every moment with her count. We have gone ice skating, went on searches for Christmas decorations, and had a lot more adventures. Many times during the day I will see her face fall once again, when I ask her what is wrong I already know the answer but it never takes away the pain when I hear it from her mouth, “I just wish Chase could be here too”. Someone gave me the suggestion of taking dollar bills for Emma to give to the street performers. WELL, Emma is now on a mission to give to all the homeless here in the city. It has been a very good teaching moment with her. Yesterday, we were walking the busy streets of Union Square and a man laid sprawled in the middle of the walkway on one of the major lines of walking traffic. People walked past him, not even looking down. Some even walked over him, Emma was perplexed and I could tell that she could not understand why nobody was helping him. We stopped and asked him if he was okay, Emma quickly tugged on my arm and asked for money to give to him. He said he was hungry so I reached into my pocket and handed her five dollars. I do not know the mans story, I do not know what led him to that point...but it is not my position to judge it is my position to show Emma to always have a kind heart...free of judgement. Emma said we had to get lots of money so we could give it to people and I tried to explain that is very kind but there are things you can do even without money. You can acknowledge them and ask them that they are okay. No matter what position someone is in, it does not change the fact that they are people...that need not be forgotten. Later on, we went to Girdelli Square and Emma picked out a 3 chocolates to save for later. After that we continued on the the sandy beach front. I pointed out an older lady who was homeless and bathing in the ocean. She tried to discreetly get dressed on the beach and Emma was surprised some people dont have a place to take a warm bath. Her eyes shifted down and she reached into her pocket. She asked if she could give the lady one of her chocolates and I said “ABSOLUTELY”. She kindly walked over and handed the lady a shiny wrapped chocolate square. Emma came running back to me with a grin from ear to ear screeching “she liked it!”. Latter on as we walked through the city another woman was sitting on the corner and Emma gave her two dollars and the lady said “please stay in school, I wish I could be in school.” Emma learned that school is a privilege and some want to go but cant...what a good lesson. Today will not be our traditional Thanksgiving, we will not gather around a table as a family, there will be no turkey. Our gifts this year are different, our gifts are the lessons we learn from others, seeing people that dont have and learning how we can make a difference..and remembering that we are blessed despite our circumstances. It is about the little moment, holding hands, smiling, knowing we will all be together again soon. Chase and Daddy have been doing well. Chase has been so brave as he had to undergo several tests in preparation of being released. There was a lot of discussion about what to do with Chase and his need for nutrition. TPN (IV nutrition) vs NG tube (nasal feeding tube) was discussed a lot. The final consensus was to reinsert his NG tube to allow his liver a chance to rest and for him to use his gut again. My sweet brave Chase sat very still knowing what was coming, his body shook in fear anticipation but he was brave and overcame another trying moment. Chase and daddy were finally released yesterday. I use the word released loosely because he is confined to the room at Ronald McDonald House and is only allowed out with a mask for trips to the clinic. He is not even allowed outside unless it is to go on a car ride to view things from his window. He needs to be back in clinic in a few days and will be readmitted on Wednesday. It is not the break we were hoping for but we have to take blessings in whatever forms they come in. If he starts Wednesday that means that we are one step closer to finishing sooner. We appreciate everyones love and support during this time. We love to have visitors because it can get a big lonely in one little room but doctors have advised us no visitors from this point out. Chase is at a time of extreme risk, doctors reminded us that children die from virus and infection during transplant and we are in the midst of cold and flu season. As parents we understand that there is a need for balance, isolation vs. being a child. However, there is a time for everything and now our job as parents is to keep Chase safe. The time for him being able to see people and be outside etc will come...but we right now we need to focus on keeping him safe during this delicate time. We are in the beginning and he still needs 2 more transplants. We have to keep him safe during that time to be able to get him home and have normal once his body is ready. We thank you for wanting to come see Chase but for now we are kindly asking for no visitors. This too shall pass.... he will have his time to be a kid, to run outside and play, but we just have to get him to that point. Happy Thanksgiving, my love to you all!
Posted on: Thu, 28 Nov 2013 18:38:06 +0000
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