Monthly Archives: April 2015

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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