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Emotions

It’s late and I don’t know if this will make any sense but I have so much going through my mind and I need to get it out. Another liver baby passed away. I didn’t know him or his family like I do a lot of the others that have lost their fight with liver disease, but as I lay in my bed tonight, my wall came crashing down. My tears started flowing. My heart aches for these families. Too many little ones have gone to heaven lately. I do a pretty good job of distancing myself from it all. I have to. That was almost us. We almost lost Becks. I still have nightmares that we lose him. I know that something could still happen. I treasure each moment with him because deep down I’m terrified that I will lose him. I’ve seen it happen. My heart sinks with each new post of a family who has been diagnosed, or whose fight has come to an end. I’ve even pulled away from some of the groups I’m part of because it’s too hard. How do you navigate through all the mixed emotions? The heartache that you know they are experiencing, the terror that it could be you, the relief that it isn’t, the faith that things will work out, the joy that you see in your own life, the guilt that you have something that others desperately want back. I don’t know how to feel or act. I am trying to find my place in my new life. I am trying to move forward with faith and not fear and yet not become hardened. I’m trying to not bury my emotions. I want to feel. I want to remember what we went through and remember the pain and fear and worry. I want that to help me to help others. I also want to feel the joy and happiness in my life but that means I have to feel the pain. It’s torture. The agony of seeing wonderful friends go through devastating trials; ones that would break me. The fear every time we get Beckett’s labs, worried that something might be wrong this time. It’s hard having this new level of feeling. It’s hard having it be real life and not just something that happens to other people or in stories.

I find myself clinging fiercely to those I love, my husband, my children, family and friends. I find myself praying harder than ever for miracles in the Lord’s timing, for peace in His plan and the courage to walk tall each day. I want to find my purpose in all this. Why have things turned out the way that they have? What can I do? How do I make a difference? I don’t know the answer. I’m trying to figure this out daily. So for now I will pray and weep for those around me, I will squeeze my kids a little harder, and I will turn myself over to Him to mold me and strengthen me, to show me the way I should go, to use me. And I will feel. Love, sorrow, joy, fear. I will allow myself to feel it all. And tonight it’s pain.

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Perfect Little Moments

It’s 5 pm. I’m making dinner. Music is playing loudly in the background and I can’t help but dance a little. I hear the girls playing upstairs, their laughter echoing through the house. As I stir our dinner, I feel a little tug on my pants. I glance down and see a perfect little face beaming up at me. Beckett scrunches his nose and smiles at me. I laugh and watch him as he crawls away to his high chair and pulls himself up. He looks back at me and smiles again. “Love you bubba.” I turn back to our dinner. And the tears start to fall.

I have moments like this almost daily now. Where the complete normalcy and beauty of the ordinary comes shining through. I love these moments. Moments that remind me just how far we’ve come and what we’ve learned. This week especially has been extremely emotional. On Thursday, it will have been exactly one year since B was diagnosed. One year. I remember so vividly the fear and worry that we were experiencing. And now our lives are so happy and joyful. A year makes such a difference.

Things at home are so perfect. Sure we have our ups and downs but overall life is just so wonderful. The changes that have occured over the past couple months are huge. His picc line was pulled out. No more lipids! We went from twice weekly blood draws to once a week. This has been great since we don’t have the picc line and have to poke Becks each week. We have been going to the doctor every 2-3 weeks instead of weekly. His belly has been staying stable and we introduced fats into his diet. He did great with that so we introduced milk. He hated it at first but once we introduced him to chocolate milk, he’s been doing just fine. We’ve gone from 15 meds down to 10 with a couple more looking like they will disappear soon. We’ve discontinued more than 5 but have added a couple in. It’s fine though because we discontinue heavy meds and add in simple ones like a multivitamin. So many people take multivitamins!!! I’m thrilled that some of his meds are simple ones. He has gone from barely drinking 1-2 ounces of water/apple juice to drinking 25 ounces, 20 of that is milk! Because of this we have cut back how much he gets through his feeding tube. He was getting 17 ounces but now only gets 5-7. We are hoping the feeding tube comes out soon. He eats 3 meals a day and has a couple snacks. He likes pretty much everything!! Just over a month ago I was feeling discouraged because he would barely put anything in his mouth. Our speech therapist was pretty stunned the last few times she came and he had made huge leaps. He went from not being able to sit, to sitting, army crawling, real crawling, pulling up to his knees and now pulls to standing. He is even letting go of the furniture with one hand and has rock solid balance. He is catching up so quickly. I am astonished.

One year ago, we were about to embark on the scariest journey I have ever been on. I kept thinking why us? Why Beckett? But now all I can think is Why NOT us? Why NOT Beckett? Look at how our lives have changed. Everyday is beautiful. Everyday I see the beauty in the ordinary that I never noticed before, at least not with any regularity. I see it in everything we do. I cry tears of joy almost daily thanking my Father in Heaven for his abundant blessings and his wisdom in teaching us a very valuable lesson. A painful one but one that changed my perspective and has made me a better person, wife, and mother.

And so I look forward to future little tugs on my pants, and my heart. Constant reminders of how blessed we are and how wonderful life can be if you’re willing to look for the little, ordinary, perfect moments.

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Faith of a Child

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One evening 3 months ago we had just got the girls and our man cub settled into bed. Kim and I nestled in on the couch and started our nightly routine of, “what do you want to watch?” As we were scrolling through our Netflix list trying to make a decision Kim heard the unique sounds that only a child knows how to make coming from the stairs. She turned around from the couch to face the stairs to discover which of the two mobile children it could be. It was Addie. She had tears in her eyes. Kim noticed the tears immediately.

“Addie, what’s wrong?” she asked.

“I just want Jesus to come to our house.”

“You want Jesus to come to our house?”

“I just want Jesus to come to our house.”

I chimed in, “Addie, come down and talk to me sweetheart.”

Version 2She came quickly running down the stairs as if trying to escape a fire. I pulled her onto my lap and asked why she wanted Jesus to come to our house. She replied,  “I just really love Beckett. I want Jesus to come to help Beckett and Mommy feel better. I just want him to come to our house. “As the realization struck Kim and I of what Adalyn was saying and what she had been internalizing in her little mind, our eyes welled up with tears.

I didn’t know how to respond. I was speechless and felt stumped by my 4 year old. How do you tell your child that Jesus isn’t going to come to your house? He is not going to knock on our door and we are not going to get to see him. How do I explain this to her?

I wrapped my arms around her and I thought about it for a minute. I decided a prayer would be our best course of action. I asked her if we could say a prayer and she agreed. In that prayer I asked that Mommy and Beckett would be watched over by Jesus. That seemed to do the trick and Addie went back to bed.

I have pondered this experience countless times since it has happened. I have played it back in my mind over and over again. I think sometimes as adults we over complicate the simple and easy things. We poke fun of those who are innocent. We grown ups “know” too much when in reality we forget that the beauty is in the innocence of not knowing. We over analyze rather than seeing the situation or truth for what it is. We anticipate and make plans for the outcome or future without really having a knowledge of what the future has in store. At least I do. We (big people) draw a line in the sand between faith/hope and reality of life. To children this line does not exist.

IMG_1270As much as I prayed for a miracle that Beckett would get his transplant I did not exactly feel confident that he would get one. For a while the plan that God had for Beckett seemed unclear, uncertain, and often times completely non existent. My hope was diminishing quickly. I could honestly compare myself with the father in the New Testament who took his child to Jesus and said, “Lord I believe; help thou my unbelief.”  After watching Beckett’s miracle gift come together and looking back at all the moving pieces there is no doubt in my mind that God was at the helm the whole time. He knew exactly what he was doing. It was a true miracle and nothing short of a miracle. I feel ashamed for doubting. I am embarrassed by my lack of faith. I was trying so hard to be a father, protector and a provider that I completely overlooked the fact that I needed more than ever to become as a little child.

This afternoon Adalyn and Raemee are coming to visit their brother in hospital for the first time since his liver transplant. I can’t wait to squeeze them both and tell my oldest princess, “Guess what Addie? Jesus came and Beckett’s getting better!”

 

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How foolish was I?

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Over the last 48 hours I have physically felt changes happening inside me. I have thrived off the adrenaline that can follow after receiving bad news. I can remember the moment when I felt my mind suppress my fears and true feelings and place them into a deep corner. It’s a dark corner somewhere that does not allow me to honestly process how I feel about the cards being dealt on the table. I am very aware of how I should feel but at the moment I feel hollow and empty. As the weight and pressure in my head increases I realize the adrenaline is gone. Exhaustion is setting in and it’s getting harder for me to continue to neglect my emotions. The breakdown is on the horizon.

(null) (3)I thought I was prepared. I had months to get myself ready. How foolish was I? To think I have been worried about what is on the other side of the fence when I haven’t even explored the side or area that I reside and am encompassed by. I have been so worried about the potential risks post transplant that I have completely ignored what has to happen for Beckett to receive a new liver and a second chance. Common scenario with transplants is the child listed has to decline and get worse in order to move up in priority on the transplant list. Get worse to get better. I admit to being ignorant and not worrying about Beckett getting worse. My anxiety has been focused on the small percentages of uncommon horrible things that could happen after Beckett receives his gift of life. I take it all back now.

(null) (4)I can’t explain what it’s like other than saying it is excruciating to watch my man cub transform slowly. It started with his skin and eyes changing color. I miss my pale faced and rosy cheek son. Many comment on his big blue eyes but all I see is yellow. His personality took a hit next. He stopped smiling. He became irritable. Groaning, moaning, and any other sound that he could come up with to express his dissatisfaction and discomfort. The latest changes include glazed eyes and constant desire to be sleeping. It feels like I am watching my son slip away. I am not ok with it. I am not ready for it. I want a do over. I want more time to get ready. Sadly, I now understand that no amount of time could ever prepare me.

This looks like it could be the potential of a very long road. I will wake up in the morning. I will stretch. I will tie my shoes. I will put a smile on my face for Beckett. I will keep walking down this road by his side. No matter how long it takes.

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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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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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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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