Is this really my life? By Liz Conrow - 18 minutes ago We have had another quiet day in the Conrow home. Amanda continues to rest peacefully. She is always on the couch snuggled in someones arms. Who knows that the human touch isnt part of what sustains her during this month? We love holding her and snuggling her and kissing her soft head. I am constantly watching her breathe and I am always more peaceful when she has at least 10 respirations/minute and even breaths. Is this really my life? This is all so very hard. There is nothing that prepares you for this experience. I understood Amandas disease. I understood treatment options and what we could and couldnt do. But I dont understand anything about losing a child. I dont understand anything about the process of watching someone die. And every day I worry that today could be the day. Every shift in breathing. Every wet or dry pull-up we change. Every movement of her arms I analyze wondering what it all means. And I have no clue. Waiting and wondering and living in the moment as much as possible is really hard. Is this really my life? As I was putting the older three to bed last night, we had another one of our frequent talks about Amanda and life and how difficult this is. I know this is hard. I can see the toll this has taken on all of my kids. And yet I see how incredible my kids are despite the difficulty. Mike has been getting grouchy around the house lately. Well, we all have... but he has been complaining that it is boring here and that we never get to do anything fun. In reality, the kids are doing lots of fun things with other people and they are not always just sitting around the house. His complaining, though, is much more than a 10 year old wanting to have fun. He misses having his mom and dad free to come and go. He misses the family of even five weeks ago. He misses seeing Amanda wrestle dad. As we talked, I let the kids know that this really is hard on everyone and it is boring sometimes but that it wont be changing just yet. I keep trying to tell the kids every day what a tremendous job they are doing and how helpful and patient they are despite everything. And at times I wonder...Is this really my life? As we talked last night, Mike was almost in tears a few times. He worried that maybe they shouldnt go to school since Amanda has already outlived her expectations, then her time is probably very short. And to an extent, I understand what he is saying. But I assured him that for now, he would still be going to school. He also expressed his worry that the staff from the outpatient clinic where Amanda frequently got chemo must really miss her. He continued to say that we should invite them over to visit and see Amanda. He always surprises me with his thoughts and his wisdom. In truth, I miss the clinic staff! We never had a chance to really say goodbye and let them know how awesome they all are. I agreed with MIke that they should visit. Thanks to Michael, the clinic staff has been invited and we hope they visit tomorrow on their way home from work. I cant believe that all of the wonderful nurses, doctors, techs, office people, etc...who have cared for Amanda will be here in our home. Is this really my life? I have become a part-time nurse here at the home. I am pushing IV meds twice a day, changing morphine cartridges and pump batteries on a regular basis. Jessica has come along as a formidable assistant. When Amanda was first diagnosed, Jess was Nurse Julies assistant. She was always right there helping out in any little way she could. As time passed, her interest in helping waned as Amanda did not seem to get any better. But she is back at it and she is really good! She even helped me push the IV meds today for Amanda. She loves her sister. I let her know that when she is a nurse or a doctor herself, we will have photos of her doing all of this at the age of seven. My seven year old daughter is giving her six year old sister IV steroids. Is this really my life? Samantha continues to express her emotions through helping everyone at home and doing what she can to make life easy for us. She doesnt like what is happening but she keeps a positive attitude. She has been sleeping in Amandas bed for the last few weeks so that she, Mike & Jess can all be together. She got emotional with Paul last night about the fact that it is hard sleeping where Amanda should be. So many changes. So many things that none of us want to get used to. Tonight she slept on Emilys floor. Emily was not yet asleep and when Samantha made up her bed, Emily said, Matha, you sleeping here? Thank you! Thank you! That is good! Sam & Emily are in one room tonight...Mike is in his bed...Jess is on an air mattress on his floor...Amanda is tucked in bed between me & Paul. Is this really my life? In addition to all of the hard things, there have been many bright spots. This whole purple ribbon thing has taken on a life of its own. We have been completely overwhelmed with love and kindness. I have loved seeing pictures and posts on the Purple for Amanda and the Prayer for Amanda pages. I am continually amazed at the love being poured out by friends, family, and especially strangers. Last I checked there were 35 states represented that had purple ribbons and at least 10 countries around the world that have ribbons up. Beyond anything I could have dreamed up. People have gotten purple manicures... businesses have gone purple... the entire radiation oncology department took a photo of their purple... and today the Webster school district has declared Wednesday, Purple for Amanda day! I am simply awestruck by the purple love we are feeling and the way it has moved people to pray for Amanda and support our family. I sit on the couch looking at these pictures and hearing these stories and I am in disbelief. All of this is really for my sweet Amanda Panda? My brain has trouble believing it. Is this really my life? These purple ribbons have pulled together a community for a really beautiful cause. There are unique connections being made...love is spreading and it is incredible. I have heard from several friends/family members that they are surprised by the ribbons popping up in their own neighborhoods. Pauls brother mentioned that a neighbor two doors down had a purple ribbon out. What is their connection to Amanda? And the Crandalls said a neighbors house a few doors away was completely purple and they didnt even know who that family was. This is a unique opportunity to meet your neighbors. Let Amanda be the bridge that spreads love. Take a risk. Knock on that neighbors door. Ask about Amanda and appreciate the little gifts of love Amanda gives to all of us. My six year old is changing the world. Is this really my life? I wish I could record every thought, emotion, conversation I have had had this month. I am thankful we have this place to share our lives with all of you. I am thankful that you care so much about us and about Amanda. Please dont stop praying. We love and appreciate every one of you more than you could know. I have to wrap this up and go to bed. But thank you for carrying us in your hearts all day long.
Posted on: Tue, 27 Jan 2015 05:26:48 +0000
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