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Certain smells, sights and sounds can bring back memories. The smell of chocolate chip cookies baking reminds me of my mom and coming home from school, or the smell of certain colognes remind me of high school. Rain reminds me of nights in my room with the window open, soaking in the smell and sound and feeling peaceful. But over the past year, Shawn and I have noticed lots of similar triggers that bring back not so great memories. Some that literally send us into a panic. We will be watching a TV show and if there is beeping both of our hearts start to race as we worry that Beckett’s pump is going off only to realize that he doesn’t even have a picc line or feeding tube anymore. I instinctively want to pack a bag the night before we have clinic because seeing Clinic in my planner triggers memories of being admitted to the hospital every clinic visit for almost a year. And yet we haven’t been admitted to the hospital in over 9 months. And one of the most vivid ones for me is certain types of soap because the smell instantly transports me back to the hospital.

It’s been an amazing year and we have only had minor bumps and bruises and I still kept wondering why I would have such hard days and painful memories. We were always able to push past but they were still there. I even struggled through this latest pregnancy. I tried not to think of the baby growing inside of me. It was a defense mechanism. I was trying to protect myself from getting hurt. But I digress. To really understand what I’ve been feeling, I need to back up. To almost 2.5 years ago…..

After we had Beckett, literally minutes after, when we were sitting in the hospital room holding our new little son, 2 months before we even knew he was sick, Shawn and I had a very strong impression. We started talking about baby number four. Now I had just given birth about 3-4 hours earlier so this was seriously crazy talk. But neither of us felt it was odd at all. We just knew that there was another baby for us. We talked about possible names and what gender we thought this other baby could be. Crazy right?!? Looking back, I truly believe that this was a tender mercy from my Heavenly Father. He could see our path and knew I would be terrified and so he gave me strong feelings to help me stay where he wanted me to be. I’m not sure if I would have tried for another baby after Becks if I hadn’t felt so strongly about it before he was diagnosed.

Although there has never been any indication that his disease is genetic, it’s hard to not let your mind go there. After we conceived, I worried and prayed about this baby. Then I did the opposite and just pretended that this whole situation wasn’t happening. I made myself busy and some days truly forgot that I was pregnant. I can’t get hurt if I don’t get attached. I did not want to again go through what we did with Becks. We found out we were having a girl and chose her name. Finley. But still when I prayed, I didn’t use her name. I didn’t want to get attached. Now I was still excited to be having a baby, I was just afraid and so I distanced myself from her.

November 29th came and this beautiful little girl came rushing into the world.

I was in labor for only 4 hours. After 2 hours of intense contractions, we headed to the hospital and I had her 2 hours later. I didn’t even push, she just came right out. It was the first time I didn’t get emotional when they handed her to me. I didn’t cry. I just felt shocked. No matter how much you pretend to not be pregnant or try to push it from your mind, once that baby is here, it’s REAL. I held her and looked at her. Then the nurse mentioned that she was having a bit of an issue breathing and that’s when it hit. The emotions came rolling out of me. I was crying, feeling such intense love for this little person. I kept asking if she was ok and they suggested skin to skin. After several hours of this, her breathing was much better. She never had to go to the nursery, and they never had to call anyone to come check her out.

It’s now been a month since Finley was born and she is healing me. Bits of my soul and my sanity are piecing themselves back together and I’m feeling whole for the first time in a long time. I felt like I was robbed of so much of Beckett’s babyhood and Finley is showing me that it’s ok. It’s ok to love fiercely and deeply no matter what we’ve gone through. It’s ok to open yourself up to pain because you never know what will happen. I’ve been so afraid of getting hurt, I check Finn’s poop religiously to make sure it’s the right color and am constantly asking Shawn if she is looking jaundiced. But in opening up my heart to her, I am filled with so much love and joy. She is a light. She is peace. She reminds me of all the good in those around us. I’m learning to not freak out at every little sound that reminds me of the hospital. I’m letting myself forget. I’m letting love win.

4:32am: I feel pressure on my shoulder. It’s Kimmie. My first inclination is to pretend like I didn’t feel anything and fall back asleep. I then hear Beckett. The voice in my head calls him a monster. He woke up
at 4:30am the previous day as well. Starting to feel like Groundhog Day.  I roll out of bed and get him taken care of. I rest my hand on his face, he reaches back and grabs my fingers. I love this lil Booger!

The past few weeks have been a little rough on the family. Beckett was admitted and the decision was made to list him for a liver transplant. A few days later I was up in Canada for work, when I got back I went straight to the hospital to take care of him so Kim could go home. Because my flight was delayed she left before I could see her. We planned several outings so I could see the girls and my wife but everything fell through. We were told multiple days in a row that Beckett “might” go home tomorrow. That never happened and we are still here. It could be another week before we go home because of the setback he had today. At least this is the timeframe we have in mind but Beckett’s doctors don’t want to give us a timeframe or criteria he needs to meet to send him home. It’s been discouraging to say the least.

While struggling with the situation that life was presenting me, I came across this:

“Now all this suffering might indeed be unfair if everything ended at death, but it doesn’t. Life is not like a one-act play. It has three acts. We had a past act, when we were in the premortal existence; and now we have a present act, which is mortality; and we will have a future act, when we return to God.” – James E. Faust, Oct 2004

Reading these words pulled me back to real reality and changed my perspective. What’s two weeks of not seeing my wife and daughters if it means I get to spend eternity with them and take care of my son? Granted, I don’t want to miss their entire lives but how often do I have the mindset that my world is crumbling to pieces. I’ll tell ya, it’s more often than I should. If a miracle happens, and I believe one will, Beckett will be past the worst in about two years. Our roles may be challenging and I might regret saying this, but a couple years of unfair moments is minuscule in this thriller that God has us a part of.

Lights. Camera. Action!

December 1st is Biliary Atresia Awareness Day. A day I never thought I’d know.

We are blessed to be part of a very loving liver family. They have welcomed us in without question. They have cried with us and celebrated with us. Each has their own story to tell; each story is unique and equally amazing. Some are in the middle of their journey and others, like us, are at the beginning. I wish that I could tell everyone of all the wonderful people we’ve met and the incredible stories we’ve heard and the amazing miracles we’ve seen. But there just aren’t words.

So to honor our little warrior Beckett and all those who are currently living with Biliary Atresia or have a child with BA or have experienced loss because of BA, we ask that on Monday December 1st, you wear either yellow for liver disease or green for organ donation. Post a picture. Hashtag #loveyabeckett and #biliaryatresia and #organdonation. Help us spread the word. Help us raise awareness!

I want to hear my girls crying because they don’t want to share toys. I don’t want to hear Beckett scream because he had to have his 3rd IV in one day.

I want to watch tv with Shawn. I don’t want to watch monitors.

I want to clean up spilled milk and sticky faces. I don’t want to clean up vomit because Beckett fights his meds.

I want to nurse my baby. I want to comfort him when he’s sad. I don’t want to wait for the smelly, thick formula to warm up.

I want to lie down because I’m tired from chasing the girls around or running errands. I don’t want to lie down, exhausted because Beckett is so uncomfortable and can’t sleep.

I want to get a headache because my kids are loud and crazy. I don’t want to deal with a migraine because I’m more stressed than I’ve ever felt before.

I want to make dinner and eat as a family. I don’t want cafeteria or cold fast food.

I want the well check visits where the pediatrician tells me how great my kids are looking and to keep up the good work. I don’t want conversation after conversation about how sick my baby is and wondering what I could have done differently.

I want to take a rushed 5 minute shower so that I can hurry to stop the girls from getting into trouble. I don’t want to use a communal shower.

I want to spend forever trying to put a fussy baby to bed. I don’t want to spend forever trying to put him to bed only to have nurses wake him and poke him every 30 minutes.

I want to hear him coo and giggle. I don’t want to hear him choke and gag.

I want, I want, I want. I want my old life back. I want the piles of laundry, the runny noses, the clutter. I don’t want the liver disease, the doctors and the worry.

I want a healthy baby.

I’m sure the day will come where I feel more positive about things but for now I want to be angry. And I want to cry.

But most of all I just want my healthy Beckett back.