A Letter in Colors

Dear Beckett,

Ever since you were born, I have seen the world differently. Small things mean so much more; I see things so much more vividly. And everywhere I look, I see colors. Colors that remind me of you. Colors that make me laugh or make me cry.  So I wanted to write them down so I always remember how colorful you make our lives.

Red- The first thing I think about when I see red is that little tongue of yours. Always out of your mouth, ever since you were born. It was always a sign of you being happy and then once you started smiling, it always accompanied the smile. Now your tongue hangs out because your mouth is so dry. But it’s still the cutest thing I’ve ever seen. Red now also reminds me of blood. Oh there have been way too many times that I have seen your blood. Weekly, sometimes daily, blood draws and most recently bloody noses. It’s hard to see your blood because it’s a constant reminder of what you battle every day.

IMG_8188Orange- Orange makes me laugh. It reminds me of when we were just starting out with your feeding tube. We had a learning curve. And we wanted your sisters to be involved. So Addie asked to help give your meds. We agreed. Your dad kinked the tube, put your syringe in (the one with the orange vitamins), and then told Addie to push it. One slight problem. He forgot to unkink it. Addie pushed with all her might and BAM! Orange medicine exploded everywhere! Both you and Addie started screaming! I think it scared you both. In the moment it wasn’t funny but now looking back, I can’t help but chuckle when I see the color orange. P.S. Orange is one of my favorite colors of clothes on you. You look darling.

Yellow- Yellow used to be one of my favorite colors but now it scares me. Because when I see yellow, all I can think of is your jaundiced skin. It’s hard looking back at some of your photos and seeing just how yellow you were. And knowing that you will most likely get that yellow again as your liver continues to fail. Even now, I see the yellow returning to your eyes. And it petrifies me. Yellow also reminds me of your TPN. I looked yesterday and you’ve been on TPN for 118 days now. 118 days. That’s 1/3 of the year. I can’t believe that it’s been that long.

Green- Oh I love the way green makes me feel. It reminds me of fun. Your bouncer is green and man oh man, do you love that thing. You get it bouncing like crazy. I can always get you to smile when you are in it. Sometimes you even fall asleep bouncing. Your favorite toys are also green. The first is a rattle with jingle bells on it. Sometimes after you’ve shaken it for 10 minutes straight I just want to throw it across the room, but then I look at you and see how content you are and I just smile. Your other favorite toy is mine as well. It’s a little green matchbox car. When I give you that car, you look so intently at it, and with one little finger you reach out and spin the wheels. I love seeing that. You are such a smart boy. And you keep learning how to manipulate the world around you. Oh how I love it.

IMG_8751 Blue- One word. Eyes. Oh your eyes. So big, so round, so blue. Whenever anyone sees your pictures or looks at you, they always comment on how beautiful your eyes are. And they are. You are an old soul. And that beautiful soul radiates through your eyes. I hope they don’t change color. I hope they stay blue forever. They are my favorite feature of yours.

Purple- Purple brings shame and sorrow. When your belly started getting big, we discovered that you had portal hypertension which caused your veins to become so prominent. Every time I change your clothes or bathe you and I see your big purple veins shining through your skin, I feel sadness. The shame comes from an accident that you had during one of your many hospital stays. I had just arrived at the hospital, given you kisses and then went to grab some food. When I came back I thought you were asleep so I started to eat my dinner right outside of your room. A couple minutes later, I heard a blood curdling scream. I rushed in to see what was the matter and to my horror, I found you on the hospital floor. The side of your crib was down and you had rolled out. I screamed for the nurse, and immediately was sobbing. I cradled you in my arms. A couple nurses came running in and started checking you out. I looked at one of the nurses and kept sobbing, “I put the rail up. I know I put the rail up.” I was devastated. How could I have done this? How could I have hurt you, unintentionally, but still. We later found out that the rail of that particular crib wasn’t latching right. You had to really make sure that it locked in place. So although I did put the rail up, it hadn’t locked. Oh the guilt I felt. And for the rest of that week, I was constantly reminded of it because you had bruises. Purple bruises on your leg, your cheek and your forehead. It could have been so much worse and I’m so grateful that you had angels watching over you.

Peach/Pink- Your lips. Your skin. Those rosy cheeks. Oh I love to kiss your pink skin. I treasure the pink that I see in you because I remember when you weren’t pink and I see the pink going away. So I will kiss your cheeks over and over and over again.

White- I dread white. White reminds me of the hospital. Those stark white walls. The moments we received horrible news. Stuck in those rooms for days on end. I don’t love white. So sterile, so boring, so restricting.

Brown- Brown reminds me of your hair. I know that sounds silly but I treasure your hair. When you were born your hair was brown and I was so happy. Addie has blonde hair and although Rae’s hair started out dark it is so much lighter now. So I was thrilled to see the dark hair on you. As we started into your liver disease your hair stopped growing and then as your nutrition got worse, all your hair fell out. Within two days, your hair was gone. I remember pulling chunks out. It was so sad. And then the TPN kicked in and your nutrition was better. And within a week, your hair was back! And it was still dark brown. I love how fuzzy your hair is, I love your crooked hairline. But most of all I love your long brown eyelashes. Everyone comments on them and they just keep getting longer! You’ve even been called a girl a few times. You’re so lucky to have such long eyelashes. They compliment your blue eyes so well. You are such a handsome little man.

Family-131Black- This color has become one of my favorites. Because when I think of black, I think of several very vivid moments. Each happens in the middle of the night. I wake up and the room is pitch black. I quietly climb out of bed and walk over to your crib. I watch your outline. I reach my hand into the crib and place it on your belly or your back. I feel you breathing. I feel the peace and quiet. I usually end up crying at your perfection. Oh Beckett. I love you. I will never forget those moments. And I will continue to watch over you in the night.

Thank you Becks. Thank you for bringing so much color into my life. Thank you for helping me enjoy the little things and let go of the big. Thank you. I love you baby boy. My cup runneth over.

Love you forever and a day,

Mama

 

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Moving for a Miracle

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!

4:45am: I am back in bed. Stress hits me. I start thinking of my travel for the day and my meetings while I am out in Chicago. AGENDAS!!! I hate meeting agendas but they are the necessary evil. I haven’t prepared them yet. I need to get them sent out. I tell myself that I will do them on my flight. FLIGHTS!!! I haven’t booked my flights yet for my trips coming up. Anxiety is now rattling my cage.
5:00am: I can see the darkness in the room changing tone. Ugh. What am I doing awake? I turn to Facebook. After a quick browse I put my phone down. I start thinking of new friends. Oh how I like them. My mind gradually slips into thinking of old friends and then really old friends. I can’t help but reflect on how they have all changed. How they have changed? How much have I changed? How much have I changed in the past week? Seems small but deep down I know it’s bigger than I am giving these changes credit for.
5:30am: Scripture time. Might as well do it now and maybe I can read myself back to sleep?
6:00am: My body is now restless from forced attempts to fall back asleep. I roll over. The closed window blinds are now glowing around the borders where the gaps are. The sun is rising behind Mt. Timpanogos. I pull my headphones out from my bedside drawer. Maybe music can help distract me and I can rest?
6:30am: Still wide awake. My alarm goes off and I roll quickly out of bed and begin stretching. Oh, relief.
6:45am: I pull on my running pants. Emotions trickle through my body. The emotions reach my eyes and I quickly blink and think of manly things to distract me from tearing up. I finish getting ready and take two steps down the stairs and then….
“Crrrrrrrreak!”
It can only be one person. It’s my oldest. She has a long history and a sick sixth sense of interrupting my desire to begin a workout on time.
“Good morning, June!”
“Hi Dad, I waked up super quickly so I could see you!” I couldn’t help but laugh. Sixth sense confirmed.
7:00am: Finally out the door. To begin my first day to a new commitment. The commitment of #movingforamiracle. Bill and Andy, the parents of Dru, one of the most beautiful little girls you will ever see, 15 days ago started running a mile a day with the commitment of doing so until Beckett receives his liver transplant. When Dru was on the waiting list they did something similar and I was blown away when they began running for Beckett and asking others to do so as well. How could I not join them in the cause? If I don’t join them, how could I expect others to do so?
7:05am: I get to my starting point. I begin skipping. Don’t ask. It’s what I always do before starting a run. I think it helps me find a rythim. I generally have headphones but not today. I wanted to pace myself to the beat of my heart and listen to the gravel crackle beneath my feet. I take a deep breath. I smell the dew resting on the grass in the fields by our home. It takes me to a place deep inside where harmony and balance reside. I pick up the pace.
I feel great. I feel in control. I then hit a hill. I can feel the resistance increase. My breathing gets harder. I think of Beckett. I can hear him breathing heavy in my mind. My memory is now flashing through all the times that he has done so because of the pressure on his lungs caused by fluid inside his abdomen. A fire inside starts burning and I am determined to conquer the hill in front of me. With this new determination, I lift my head up and I see the shadow of a church steeple. Comfort calms the fire burning as I realize how amazing our church ward/congregation has been. So much love. So much support. So many prayers and people fasting. They are making sacrifices for our family. As I focus on the steeple, it’s shadow moves and the sun emerges. It hits me. It’s warm. In its warmth I receive answers and confirmation that God is aware and he loves me. I am blinded by the light, I can’t see anything in front of me. God is reminding and teaching me that I don’t need to see everything clearly. That trials, obstacles, stress or worry are blinding objects in life. Even though I can’t see, the Lord is my light and can see clearly the path before me. Tears begin slowing rolling down my cheeks. They feel cold. For a moment I feel vulnerable. It’s just me and God and I don’t have to hide from myself. This sense of freedom empowers me to reach my destination. I get to the top. For the first time at the end of a run I didn’t want to stop going. So I didn’t. I kept moving forward and eventually made my way home.
7:30am Home.
It’s in the moments we least expect that friends emerge and God shows his hand. I never knew how much I needed to move for a miracle. The miracle of Beckett receiving a liver and the miracle of myself finding peace when I have not been able to for so long. Ironically we found out today that Beckett’s Kasai surgery to give him more time is no longer working. Every day now, I move for a miracle and I invite you to do the same. #loveyaBeckett

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Angels

“Mom, can I have a sleepover with you?” My favorite words when I am here alone with the girls. Addie always wants to sleep with me. And I let her. I put her to bed on Shawn’s side and go downstairs to relax for a little while.

A couple hours later, I quietly climb into bed. Suddenly I’m wide awake. All I can hear is the sound of Addie breathing. I turn onto my side and stare at her. IMG_8375 - Version 2At my beautiful first born. How peaceful she looks. How still. And perfect. She is an angel. My eyes well up with tears. I reach out and put my hand on her to feel her breathing as I cry. I love having her sleep with me when I am alone. She makes me feel safe. She makes me feel peaceful and calm. She is my angel here on earth.

D&C 84:88

88 And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.

Oh how I love angels. And need them. My family is surrounded on a daily basis by many earthly angels who love us and take care of us. From all the gifts, to texts and calls, and then to those that help us regularly. My friends are angels. The friends that take Addie to preschool every day, that take my girls on play dates. The ones that are there for me emotionally. They let me be who I am. They let me go through whatever emotion it is I’m feeling. Even if it’s the same emotion we talked about the week before. They love me. They hug me and cry with me. They are amazing.

And then there is my mother in law. She is an angel. She has so much going on in her life and yet, she is there for us. She never hesitates to check on us. She watches my girls constantly and never complains. She loves my children. She makes sure that they know they are loved and not forgotten. She hugs me and encourages me when I am scared out of my mind. I will never be able to express to her just what her service has meant to me. How much I respect her and want to be just like her when I grow up.

Earthly angels are around me everyday. I also like to think that there are some special angels watching over us, especially my little man. I have a few in mind that I pray will protect my son and help him, four to be specific. The first is my great grandma Ruby. I wasn’t particularly close to her but I remember her vividly and have always felt a special connection to her. I pray that she is with me comforting me and helping me take care of my family.

The second is Shawn’s grandpa. Grandpa Rogers passed away a couple months before Beckett was born. He was an amazing man and had so much love for everyone around him. I like to think that he and Beckett were close in Heaven before Beckett came to our home. I like to think that he prepared Beckett and encouraged him. And I like to think that he is here a lot, taking care of his great grandson.

The third angel is Dru. Dru was another BA baby who fought fiercely against her disease until her little body couldn’t fight anymore. She was a beautiful soul. Whenever we are in the hospital with Beckett, I love to picture her by his side. She went through what he is going through. I like to think she helps him conquer these tough situations and cheer him on when he’s doing well.

The last angel is a special one to me. Before we had Addie, I lost a baby. Both Shawn and I felt so strongly that the baby was a boy and it was a devastating loss. I think of that baby constantly. And when I struggle, or when I celebrate, I like to wear a necklace that has a charm to represent that baby. It makes me feel like that little one is with me. I know that some may not agree with me, and that’s ok. But I feel that baby is near us, watching over his brother. Protecting him. Loving him. And that brings me peace and joy.

I truly believe that whether we recognize it or not, angels surround us at every turn. Earthly angels and heavenly ones. And they are there to protect us and lift us up, to lift our spirits. To help us feel peace and comfort. I love that. And I will thank my Father in Heaven every day that I have so many angels in my life.

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Hurry Up and Wait

We are now approaching one of the longest times that we have been home with Beckett since he was diagnosed with Biliary Atresia. It feels amazing. Even though things are going well, it’s still been so incredibly stressful. About a month ago, we headed into the hospital for what we thought would be a two day stay. A belly draining and recovery and then home again. I wanted to get it over with because Shawn was headed out of the country and I didn’t know how to juggle being with the girls and Beckett, at home and at the hospital. It was just too much. So we headed in before Shawn left. Little did we know that our two day stay would turn into a two week stay.

We drained his belly (the scariest one so far) but we just couldn’t find a good balance of diuretics to keep his belly small for any significant length of time. It was so frustrating. Our situation has always been a little different because his belly fluid came from two different places rather than just one. Usually with these BA kids, they have ascites (abdomenal fluid) because their liver is so scarred. Blood can’t flow properly and so fluid leaks from their organs and their veins. This is part of Beckett’s problem. But the other issue stems from his surgery 5 months ago. During the surgery, his lymphatic system was damaged. So he had fatty fluid leaking from that. That was a huge part of the problem at the beginning. It’s the reason I had to stop nursing and he was placed on a special formula. But as we were in the hospital this last time, our doctor was concerned because this should have healed by now. It’s been five months and it should have taken a couple of weeks. She theorized that because of the massive fluctuations in his belly size, his lymphatic system couldn’t heal properly and was still leaking.

At that point, the decision was made to place Beckett on the transplant list, this time for real. At this same time our doctor wanted to try one last medication to see what effect, if any, it would have on the fluid issue. It was a medication that she had never used before in this situation. She had used it for other purposes but never for this. So we had no idea what would happen. We never were worried that something scary would happen to Becks, we just didn’t know if it would make any sort of difference. The medication works like a blood pressure med, except with your organs. It also slows everything down including liver function and digestion. I was ok with trying it but became a little concerned when I learned that it was a shot, three times a day. And it burns going in. We tried it a couple times but Becks didn’t tolerate it well, he cried and screamed. That’s just not like him. He can handle things much better than most people can so I knew it wasn’t a good fit. Plus it wasn’t doing anything. Then came our very last option. Same medication but in IV form. He had an IV placed and was on this medicine 24/7. For four days. So many tubes and monitors.IMG_7978

During these four days, although things were pretty slow with Beckett, they were crazy for Shawn and I. Because he was going to be listed for sure, our lives went into go mode. Beckett had an echocardiogram to check out exactly what his heart is like. We had a 2.5 hour interview with a social worker followed by a 3 hour teaching class all about liver transplants, statistics, things to expect etc. We also had a visit from a pharmacy tech who spoke to us for about an hour all about the meds that we can expect him to be on after transplant. So much information crammed into such a short time frame. I had a permanent migraine for several days. It was so much to take in and process.

At this same time, Beckett was placed on strict fluid restrictions. They upped his TPN and lipids to 21 hours a day, and he could have 3 oz by mouth a day. We had to strictly observe how much water we were flushing his NG (feeding) tube with. Every little mL was carefully counted and added up each day. We had moments where his belly grew too much and we had to start all over with which diuretics to use and at what dose. And then he would dry out, his mouth would get dry and his tongue would feel like sandpaper. He would gag and choke. Every morning they took labs to monitor his kidney function and check his electrolytes. After four days, he was taken off the IV medication but we stayed at the hospital for just over a week after that. And every day was the same. Labs. Monitor. Adjust meds and fluids. He had fussy nights and other nights he slept great. It was just so up and down each day.

Finally we got the ok to go home. His belly was staying stable. Dr. Book wanted an ultrasound before we left. She believed that the reason that his belly was staying small was that his blood was finding new paths to get where it needed to go. And she was right. I think the IV med also helped heal him a little but we saw significant changes in his blood flow. Right now it’s a good thing for him. There’s less pressure and so he isn’t leaking as much fluid into his abdomen. It could cause problems in the future. We will see.

Life since we’ve been home these past two and a half weeks has been good and stressful. He’s been dry almost the whole time. I should rephrase. His mouth has been dry. Every time we do labs, his kidneys are great and he is peeing fine and crying tears. So we know that he is not dehydrated but for some reason his mouth is so dry. We keep getting it wet with water or giving him wet towels or sponges to suck on. It helps and he loves it but he started waking up every hour during the night due to being dry and uncomfortable. It’s been exhausting. He also has gone on a feeding strike. I’ve been struggling to get 3 oz in him a day. And this last weekend, he completely has refused to eat anything. So for the time being, he is completely tube fed. Throughout the day we periodically push food through his tube. A couple mL’s every few minutes. We try to get 10-15 mL’s in every hour. If we push more than that, he vomits. It’s such a delicate balance. And it’s hard to watch.

IMG_8223We are still waiting for him to be listed. Waiting on insurance. It’s been a stress since the beginning because our insurance plan doesn’t cover transplants at Primary Children’s Hospital. We worked something out a few months ago but now that it is time to get an actual contract in place it is taking time. We had a few days a week ago where we were told that we would have to move or risk paying hundreds of thousands of dollars at Primary’s. It’s been so incredibly scary thinking of what we may have to do to save our baby’s life. But at my last appointment, insurance wanted us to do a few more things, more blood work, and an EKG so I’m crossing my fingers that they are continuing to work through a contract and we will be able to stay here and stay together as a family.

Beckett continues to be amazing. He has been rolling over like crazy and will even stay on his belly for about a minute now! That’s so amazing to me because he hates pressure on his belly. He won’t sit up or play in toys that put pressure on his tummy. So for him to be staying on his belly is a miracle. He is constantly smiling even though I know he doesn’t feel good. We are also starting to get some real weight on him. His cheeks are filling out and I’m starting to see that his wrists are getting fatter. It’s good to see him look a little healthier. IMG_0463Hurry up and wait. That’s our life lately. We rush to find a solution to an issue and then the next minute time stands still and we are left waiting. Waiting on insurance. Waiting for the call to come that he is listed. And ultimately, waiting for the day when our lives completely change and Beckett gets his second chance at life.

 

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“Suffering Might Indeed Be Unfair…”

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!

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my Liver Kid

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It’s 10:30pm. It’s been a busy night on the hospital unit. Cranky RSV kiddos everywhere. Beckett’s been fast asleep for the past few hours. Love my boy. I am sitting outside his room and have been attempting to write a blog post and am starting to get frustrated with the results. It’s evident that my writers block is going to continue. At the end of the station, Ashley, Beckett’s nurse, stands up and walks towards his door. My attention is now focused on her. She is opening his door. I pull my headphones out and am close behind her.

I enter the room. Ashley is untangling him from his chords. He is clearly not happy. I spot his bink and immediately grab it and put it under the faucet. He loves his binky wet before he takes it. I think it has to do with his diuretics drying his mouth out. He takes it and starts rubbing his eyes. All good signs that he will be back asleep soon. Once he is comfortably situated Ashley makes a move for the door. I begin to follow and Beckett starts screaming.

“Ok. Ok, Son. I am not going anywhere.”

I return to his crib side and he lifts his hand up. We look each other in the eyes. He doesn’t want to be alone. I lean in. His tiny little hand cups my cheek. His fingers begin tickling my face. He slowly moves his hand up my face to my hair. He is now grabbing and twirling my hair. His eyes close and his breathing returns to a regular pace.

(null) (1) copyI decide to stay a few minutes and soak in what just happened. As I step back from his bed, his eyes open. I’m still here. He is still calm. I walk over to the other side of his crib. He rolls over to follow me. I see the blinds are still open on his door so I walk over to close them. He rolls back over and watches me. Once I am done, I return back to the other side of his crib to sit on the couch. He rolls again and follows my every move. My heart melts a little knowing that I am enough for him. After a few minutes, he grabs his blanket and pulls it over his face. That’s the sign, he is ready to go back to sleep.

I am either sheltered or may be biased (and I very well could be both of those things), but I have never met anyone like my Beckett. He captivates me. Though he cannot talk he has been blessed with a gift to communicate deeper than language with those he interacts with. I felt terrible tonight as I recognized our blog posts and updates are dominated by his disease and the emotional pain that Kim and I carry from being parents of a liver kid. Yes he is sick, but he is such a good kid. Such a fighter and will be a far better man than I can ever hope to be. I am scared of him receiving a transplant but I am comforted by knowing he has a mission to do great things in his life. Even with pumps, tubes, and steady fluctuations of health, this boy continues to be the strength that his parents and sisters need. How can someone so little make such a big impact? Makes me wonder a bit what I am doing with my life. Makes me ponder Christ’s teaching to become like a child. Makes me grateful to be his father. #loveyaBeckett

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He is Yours

As I was driving home alone the other night to spend the evening with the girls, I found myself contemplating the day. We had just been told that Beckett would be listed to receive a new liver, that there were no other options. Our doctor was out of ideas and Beckett just wasn’t responding to any of them. I had handled the day well, processed what was happening and hadn’t cried much. It was dark outside. I was focused on driving, the cars around me, the lights. But then my thoughts drifted to that morning when we had gone to pick Beckett up from interventional radiology where he had gotten his belly drained. When we arrived, he was limp, and unresponsive. His blood pressure was lower than I’ve ever seen it. The nurse was trying everything to wake him up. To stabilize his blood pressure. I’ve never felt so scared or so helpless.

My eyes welled with tears in the car as I recalled our morning. Then as I continued to reflect on Beckett being listed and what that entailed for him, getting really sick, major surgery, possible complications, life long medications, blood draws and doctors, I started to feel so small and I began to weep. Furiously brushing the tears from my eyes so I could focus on the road. But they wouldn’t stop. Then came the sobbing. I started to pray out loud, to express my frustration, my fear, my relief. As I was praying I said, “He is yours. Heavenly Father, he is yours. Please take care of him. I will do my part. I will love him and take care of him to the best of my ability, but ultimately he is in your hands.”

He is yours. Liberating words. I can’t do all of this alone. I don’t know what will happen to my son. But I know God has a plan and I trust him, no matter the direction.

I see Addie struggling. I hear her cry because she loves her brother. All she wants is for him to come home. “She is yours.”

I see Rae regressing. Throwing tantrums. Trying to control the situation around her while her life feels out of control. “She is yours.”

I see Shawn. He is so strong. But then I see the slow tears run down his face or he gets real quiet and shuts down. I don’t know how to help him. “He is yours.”

And I know where I am at. Trying to hold it together for everyone. Trying to make sure everyone is loved and taken care of. That no one is forgotten. Trying to swim and not drown. Trying to stay positive. “I am yours. Please take care of me.”

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I’m beginning to learn…

Life with Beckett has magnified anything and everything’s capacity to be difficult. Raising kids, marriage, faith, employment, and I won’t go into the personal interests that have been tossed out the window. It’s been frustrating and exhausting on all levels. Several people and friends have told Kim and I that we are amazing and they don’t know how we do it. Thank you but let’s take a time out. Don’t overlook the hard things that you have to deal with. Don’t discount your own trials because we have a sick kid. Fact of the matter is, life is down right ugly and dirty, ruthless, hard, and sometimes very unforgiving. That’s how it was intended to be for everyone. Not just the family with the sick kid. Yet, there is supposed to be great joy with all of this. Tunnel vision and focus on the hard things make it difficult to experience joy and learning.

At some point you have to accept that you cannot do it all. For example, what comes first, church or family? Wait for it, wait for it… Neither. God comes first. If you are building a relationship with Jesus Christ and our Father in Heaven then you know which things should take priority. When you know what God wants of you, there is no guilt. Guilt doesn’t come from God. God only motivates and invites you to become your best self. You cannot transform when feeling fear and guilt.

I strongly believe that your best self changes depending on the scenario you find yourself in. For the past two weeks I have come down with an anger problem. I have never been a very angry person. However, my behavior reflects my four year olds when it comes to me being frustrated and not getting what I personally want. It’s embarrassing and I’m ashamed but while discussing my feelings with Kim she said the following:

“Where there is a greater capacity of anger and emotion, there is a deeper capacity for happiness and love.”

So do I feel more anger now because I feel more love than I ever have in my life? I think so. My anger is now an expanded part of my emotional system because I care about my family, relationships, and people more than ever before.

Beckett’s turnaround to good health after the holiday season was nothing short of a miracle. It was a much needed answer to prayers to prayers that for a while I thought were not being heard. It was a tender mercy from heaven that touched our family’s spirits in so many ways. It was a sign that God lives and he is ready to help. He is a loving Father who knows how to help is children stretch themselves. About a week into our “healthy vacation” as I call it, Kim and I began having interesting feelings. Promptings that we shouldn’t get too comfortable. They have prepared us for the past two weeks as Beckett has spiraled steadily into a state that has his medical team and parents concerned.

This crazy train has been the hardest thing I have ever had to deal with. It has brought out the best and worst side of me. I have questioned my faith and I have doubted my doubts. There are a few things which are clearer than others. I have learned more than I ever would have without this trial, sometimes I am grateful for that and sometimes I’m not. Yet, the thing I feeling strongly about right now is I have to find a way to understand what it means to have a true relationship with God. Lip service and Sunday worship is not going to do it any longer. Past experience has taught me that when life decides to do its worst I am not strong enough on my own to do my best.

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Our New Normal

We have now been home for a week. And we are starting to settle into our new normal. It goes a little like this:

7:15- Beckett stirs in his bed. Addie also comes in the room. “Hi Beckett!” I smile and lay in bed for a few more minutes while my oldest sweetie talks to her little brother.

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7:30- Beep! Beep! Beep! Beckett’s TPN and lipids are done. We have to unhook the tubes, saline flush his picc line and then flush it with heparin to prevent clots. We finish by placing a sterile alcohol cap on the end. We pick him up and cuddle on him now that he is tube free.

8:00- Rae starts to stir and Shawn prepares all of Beckett’s meds. 6 in the morning. A vitamin supplement, two diuretics, an antibiotic, a blood pressure med and a med to help keep his bile thin. He puts all the meds into Beckett’s feeding tube. Thank goodness for the feeding tube so we don’t have to fight him to choke them all down.

From 8:15-9:00 we get ready, head downstairs, let the dog out, feed Beckett, eat breakfast, sometimes get the girls dressed, and Shawn heads to work.

9:00/9:15- Tuesdays and Thursdays Addie goes to preschool. Oh how lucky I am to have a neighbor who takes her and picks her up. I don’t know how I’d do it. Beckett gets tired and I take him upstairs. Thankfully, he is starting to get back to his old self and has been putting himself to sleep.

9:15-11:00- The girls and I play, I clean, they play and make messes, we work on potty training Rae, I stop fights, we snuggle.

11:00- Beckett wakes. He is hungry again. He takes 2.5 ounces. It’s amazing. He used to only take 1 ounce every 4 hours. So this is huge for him. He now gets excited to see the bottle. We are making progress!!

Noon- I feed the girls and myself. Usually something easy like sandwiches or soup but sometimes I feel ambitious and make spaghetti or stir fry.

12:30- Nap time/Quiet time. Oh I love this time. It’s crazy getting the girls situated in their beds. And we just switched Rae to a big girl bed so it’ll be interesting to see if this time exists anymore. Once the girls are down Becks and I get a little time to ourselves before I put him in bed.

1:00- Beckett goes down for another nap. I head downstairs and clean up the kitchen. Straighten up the house a little and then I get to sit down. I either nap a little or I watch a show.

2:00- Addie’s done. She comes down to get a snack and watch a show while her siblings sleep. I clean some more or read a little.

3:00- Beckett and Rae get up. (Oh please Rae! Please take a nap in your big girl bed today!!) I feed Beckett again.

3:00-5:00- This is the time I usually get a lot of phone calls. The liver clinic will call, or home health. We change his meds every few days based on his labs. And home health is constantly talking to me about bringing me deliveries of NG tube supplies, or picc line supplies or the pharmacist calls to discuss his TPN and lipids. I also get calls from the home health nurses checking in and seeing if his picc dressing needs to be changed. Then I get calls from the delivery drivers letting me know when they will be coming by. The girls and Beckett just play and make messes. I love hearing the laughter and coos.

4:30/5:00- I put Becks down for a mini nap. And then I finally start thinking about dinner. Sometimes I make something nice. Sometimes I’m super prepared and throw something in the crockpot around 3. Other times we just make grilled cheese. Or grab take out.

5:30-7:30-  Shawn gets home from work, we eat, we clean up, we play, we dance, we feed Beckett. Then we like to watch a movie together and eat popcorn or ice cream.

7:30- The utter chaos starts. I head to the fridge and pull out Becks TPN, lipids and vitamins. I head upstairs to get it all ready and Shawn starts working with the girls to get them ready for bed. I’ve gotten pretty quick with setting up the TPN and lipids. I have to set the pumps up, prime the tubing, infuse the vitamins into the TPN bag, connect all the tubing, and change the end of his picc line. All while keeping everything sterile and clean. If I touch things, I have to start all over again. IMG_7622It’s quite the process. Meanwhile Shawn is battling the girls, getting jammies on, getting them to go potty, cleaning their rooms. Finally we reach a point where we all gather together, sing songs and say prayers. Then we put all three kids down. And then battle them to actually go to sleep. Becks is the easiest. He crashes and lately has been sleeping much better. The girls are a different story. Addie gets out several times, to tell us she loves us, to go potty, to get a drink. Then she goes right to sleep. With the introduction of the big girl bed, we are working on Rae staying in bed. We put up a baby gate so she can’t leave the room. Last night she yelled for Addie to save her. She also likes to strip naked at night. So it’s a work in progress.

Usually by 9:00, it’s quieter and we get a chance to relax a little. Talk about our days, watch some shows together. Then we head to bed around 10;30 and pray that all the kids sleep fairly well so that we get some rest.

My life is chaotic. My life is messy. My kids probably watch more tv than they should. We don’t always eat healthy. I get stressed and short tempered sometimes. My house is cluttered a lot. Things get neglected. I forget a lot. And guess what?

I ABSOLUTELY LOVE IT.

I love that we are all together. No one is in the hospital. Beckett is rolling over and has become a tummy sleeper (which is terrifying with all the cords). He is laughing. My girls are BEST friends. They love each other so much and are closer than I ever thought possible. They giggle and play pretend. They get to be kids and make messes. Shawn and I get to spend time together. We aren’t trying to keep our marriage strong from two different places. We are in the same house, the same room. We are happy. We are finally feeling a break from all the massive stress and fear. We are closer than ever. As much as I wish that Beckett didn’t have to go through this, that my girls wouldn’t tell people that their brother has a broken liver, that I hadn’t had to cry and worry as much as I have, I would never NEVER trade my life now. I love our new normal.

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Light

“We see no reason not to move forward and list Beckett.”

Oh the words that I’ve known were coming. It came out of the blue though. We have been in limbo for quite some time. Beckett’s liver labs and bilirubin levels keep going down and yet we’ve been in the hospital almost weekly dealing with massive amounts of belly fluid (ascites). Nothing works and yet they kept telling us that he was fine. It was so hard. How can he be fine when we are here all the time getting his belly drained? So when we found that there was a potential clot in his portal vein the doctors made the decision to move forward with listing Becks for transplant.

I saw the light. Finally. Instead of drifting around aimlessly, I finally felt like we could see the lighthouse. Our little boat had direction. We could now navigate through the big waves and stormy seas because there was the light. Even though I knew the light was still far away, I could see it! And then our week exploded.

We met with countless doctors, kidney doctors, surgeons, infectious disease doctors. Beckett had a cat scan, more ultrasounds and he had an incredible amount of blood drawn. We knew that we would still need to meet with social workers, financial aid people, and our liver team for a day of education. Holly, our liver transplant coordinator, brought by an entire binder of information for us. In the meantime, we were trying to get Beckett’s ascites under control. They drained his belly twice. They left the drain in. We tried IV diuretics. We tried multiple new diuretics. He started getting fevers. He wasn’t eating much. But as stressed as I felt, I could still see that light. He was being listed. The end was coming. Eventually.

We solved some of the problems. The drain was taken out and the fevers went away. We started TPN (total parenteral nutrition) and lipids (fats) which is a boost of nutrients, proteins etc to give him the calories and nutrition he needs so that he starts gaining good weight. We started him on a blood pressure med and several new diuretics in “industrial sized doses”. And suddenly his belly stopped growing as quickly. We were finding answers. Because of the cat scan we found that his portal vein was not clotted but instead it is incredibly narrow causing the same effect.

“Because we have things under control and his vein is not clotted, we are going to hold off with the listing.”

Just like that the light was snuffed out. We were adrift in the ocean, being tossed about, lost. No direction. This has happened before. We find a solution. It works for a couple days and then we are right back in the hospital. I don’t think I can do this. There is no ending. Will we spend days in the hospital? Months? Years? How do I raise my children when we have no security? When our lives are constantly tossed to and fro?

I was devastated. Don’t get me wrong. I was thrilled that he was doing well. But I have a hard time trusting that these solutions will work when they never have previously. It’s not that I want him to have a transplant at 6 months. I would love for him to be big and strong before he needs it. But I don’t know how to survive for a long time when we spend so much time in the hospital trying to get him to be ok and he’s not even listed. Mentally those hospital stays are easier when I know that transplant is coming. Now I just feel plunged into the darkness and the despair.

Then my baby boy laughed for the first time and a light appeared. He rolled over for the first time. Another light. His belly stayed small for 4 consecutive days. It did not slowly grow bigger, but it stayed small and soft. Light. We had friends and family reach out and bless our family. More lights. We came home and I watched my children together. Saying sweet things. Watched as Beckett couldn’t stop staring and touching Addie. Watched his smile. More lights appeared. In my mind I looked around and realized that I am in a dark field looking to the sky. And it is full of stars. As my world gets darker and scarier, more lights appear in my sky. Some are little, others are large. But they are my hope. That this will end. That things will get better and brighter.

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