Tag Archives: family

by | June 19, 2015 · 1:43 pm

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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by | June 6, 2015 · 10:04 am

The Timing Will Be Perfect

For the past several days, Shawn and I have been sick to our stomachs. We don’t know what’s coming. We don’t know what we will have to endure. We don’t know when relief will come. I began feeling impatient and I knelt to pray. I prayed so hard that his liver would come now. That he wouldn’t have to wait anymore and that we could move on with our lives and stop feeling so scared, anxious and stressed. I then had one of the most powerful teaching moments that I can remember. I had a distinct thought come into my mind. It was so clear and it was nothing I had been praying about or thought about before. It was as if someone was counseling with me.

“You are being selfish. In your impatience wanting a liver now for Beckett, there may be another family who needs time to say good-bye. Time to grieve. Or one more happy day with their child.” My heart felt struck and I started to cry. I have tried really hard to be ok with the Lord’s timing. Most of the time I do fine. I accept that things will happen when they are supposed to. But I never gave much thought to the fact that the Lord’s timing is perfect on ALL sides. Now I’m not saying because I had this thought that he will receive a transplant in the next day or so and there is literally a family grieving right now. But I believe I had this thought for a reason. So I can greater grasp the magnitude of the Lord’s love for all his children. That when a family is grieving their loss, they will have adequate time to do so. He sees all sides of the picture where my view is limited.

We have always prayed for our donor family. But our prayers were so focused on the peace for them after their loss. My prayers have changed. Of course, I want Beckett to receive his second chance at life soon. I want him to be ok. I want him to be safe. I want him to live. But I now see there truly is a much bigger side to this. And I pray the timing will be perfect. That his donor family will have time. Time to enjoy, to love, to say good-bye. I will never be able to thank them adequately enough for the way they will change my family’s lives. The least I can do is be patient and give them the time they need. I now pray for them in a much deeper way than I have before.

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by | February 21, 2015 · 8:30 am

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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by | January 14, 2015 · 3:27 pm

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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by | November 27, 2014 · 9:07 am

My 2014 Twenty & 14 Grateful List

In the spirit of Thanksgiving I decided to take a step back and make a list of the top Twenty and 14 things that I am grateful for. I have decided to leave them in random order because putting a numerical or symbolic meaning next to each of them is ridiculous.

  1. Beckett is on a medication that helps him pee the extra fluid in his abdomen out and he doesn’t need to have to carry his yellow accessory (drain) with him.
  2. Beckett’s poop has dark colors. Light/white poop is a sign of liver failure. The color of poop has never meant so much to me.
  3. That  “Number 1” and “Number 2” on my Twenty & 14 Grateful List both have double meanings. Do you get it? Number 1 and number 2. Seriously can’t stop laughing right now.
  4. We will be spending Thanksgiving at home and not at the hospital. Kim and I were worried for a while that this years feast would be taking place in the Primary Children’s cafeteria. May God bless those families who will be there in our place.
  5. Adalyn June. Addie is our oldest child. She is the symbol of love in our family. There is nothing that she wouldn’t do for her brother or sister. The sacrifices she has made during Beckett’s battle have been just as hard as any sacrifice that Kimmie and I have made and it doesn’t go unnoticed. There isn’t a day that passes that I don’t thank God for this princess being my first born. Love you June!
  6. Dr. Weston Spencer at Alpine Pediatrics in American Fork. The man gave us a chance by recognizing Beckett’s rare disease immediately and running the right blood tests. I will be forever grateful for him!
  7. The best neighbors. Seriously the best. We thought we were loved and cared for before but we had no idea what a neighborhood could do. Now it’s our turn to pay it forward.
  8. Subway sandwiches. You can’t beat the Spicy Italian. Lettuce, tomatoes, pickles, olives, mayo, mustard, and black pepper over pepperoni, salami, and some sort of processed white cheese.
  9. Our “primary” nurses. You know who you are. These nurses aren’t just employees of a hospital. They are family. We are so grateful for their willingness to accept our request. They take care of our son and watch over Kim and I. The weight they carry is just as heavy as ours as they counsel with our doctors. With tears in my eyes, we love you and are so grateful to have you angels apart of our battle.
  10. B E C K E T T. When Kim informed me that she was pregnant with Beckett, it took me several months to get on board with the idea of having another child. I wasn’t ready and was perfectly happy with my two sweeties. Becks, one day you will read this and I want you to know that you mean more to me than life itself. I would give everything I have up for you to live the life that you deserve son and to carry your BA torch. I am proud of you and will fight every day with you in battle.
  11. High by Young Rising Sons. I came across this song when Kim was in the last weeks of her pregnancy with Beckett and it became the theme song of her pregnancy. It has now turned into the theme song of Beckett’s life. Touches my core every time I give it a listen.
  12. Technology. How blessed are we to live at a time when medicine practices have never been better? Not to mention that when my family needs the prayers of others I can Tweet, Facebook, and Instagram a request to hundreds of people. There is nothing I can’t do from a smartphone/tablet. Working has never been easier in this time of needing to balance life and work.
  13. Family. What a beautiful thing family is. There is no better way to understand how our Heavenly Father feels than being a parent. I am grateful for my parents, in-laws, and the many other individuals who have acted as parents in my life. I am grateful for my siblings and the strength that we draw from each other.
  14. Domo, Inc. This company takes care of their own and I am proud to be a Domosapien. By the way, we’re hiring.
  15. Raemee Kay. This peach leaves me speechless on a daily basis. From the beginning she has been my stress ball. She is the most physically dirty kid I have ever known. She is the instigator of mischief and she is more gifted than most. There is not a thing my Mimi girl can’t do. I am willing to bet that she can make anyone smile. Rae, don’t change because you are perfect sweetheart. Saying I love you is an understatement.
  16. Snow capped mountains. Let’s be honest with ourselves for a minute and admit that it’s breathtaking and a scenic view doesn’t get much better than snow capped mountains. If you want to argue with me than take a look at this picture by my friend Br1dger and sit back down.
  17. Our home. It’s cozy. It’s warm. It’s located in a city that I swore I would never live and now love. It’s perfectly located for our little world where we live our life.
  18. My Father in Heaven. We have had some words lately. Despite my frustrations and pains he has always listened to me. However many times I fall he sends me help. He loves me and shows me so I don’t forget it.
  19. Freshly shaved legs. You’d think I’d be meaning Kimmie’s legs. Don’t get me wrong, those are hot, but I am talking about my own. Oh, daddy. There is nothing like getting in bed or putting on a pair of pants over freshly shaved legs. Try it for yourself if you don’t believe me.
  20. Kimmie. She is my world and my strength. She is my best friend and my eternal love. She is compassionate and forgiving. Kim has a way with our kids that amazes me. Since day 1 she has been my living example of the Savior and has continued to be my example since then. I would be lost without her and am so grateful she is my companion in this life and the lives to come.

And

  1. Sound of water. Now I am not talking about from your sink. I mean from a river, stream, or waterfall. The sound of constant crashing and flexible adjustments that water makes as it gets tossed, turned, and dropped by running it’s course. I find the sound soothing and peaceful. I think there is a deeper definition of “going with the flow” that we often glaze over.
  2. Organ donors. These individuals are true life savers. These selfless individuals understand what life is about and want everyone to live life to the fullest. If you’re not a donor, you should be. A wise woman that I greatly respect once said, “if your child needed an organ to save his/her life, would you take it? If yes, then it’s reasonably expected that you’d be willing to donate.” Click here to register today.
  3. My sister. This woman keeps going. She inspires me. I hope to be more selfless like her.
  4. Nacho cheese. So freaking good! Right?!?
  5. Cycling. It’s freedom on two wheels. It’s my pain playground. It’s the time where I channel my heart, mind, and muscle to move as one. On the bike I learn the power that my body has and how all of the moving pieces inside God’s beautiful creation come together to take me to my desired destination.
  6. Our Liver Family. These liver families have brought Kim and I so much peace and have helped fortify Kim and I. It’s a family that focuses on love and support rather than judgement. The circumstances of our association are not ideal but we are better people now that we are rubbing shoulders with them.
  7. Sunshine. Ahhh! Let’s face it, there are no words to describe it’s beauty.
  8. Car sunroofs. What a brilliant idea! It’s a perfect place to let the fresh air flow into the car while letting the sunshine in from above. It doesn’t matter where you are when your sunroof is open you feel like you are vacation. You feel cool and on top of the world. Everyone deserves to feel that way. If your car doesn’t have a sunroof. Sell it. Get a car that does and soak up the rays.
  9. Life Trees. You’re probably like “Whhhat?!?!” A life tree is a tree that has equal or more years of life than you do. They are tall, strong and have deep stubborn roots. However, no matter how big they are, no matter how strong, nor how deep their roots run, they find new ways and areas to grow.
  10. Dreyers Mint and Peppermint ice cream. #numnum
  11. Mexican food. Doesn’t matter what it is. Taco Bell, Del Taco, Taco Time, El Azteca, Maria Bonita, Mama Chu’s, La Costa or Red Iguana. I’ll eat it. Tacos, burritos, quesadillas, taquitos, tamales, enchiladas, or tostadas. I’ll eat ’em.
  12. Our liver team. Dr. Book, Barbie, Holly, Brook just to name a few know exactly what they are doing. It’s not their first rodeo and we feel so blessed to be with one of the greatest doctors and teams in the country.
  13. Jesus Christ, my Savior. When it comes to the sacrifice of The Redeemer of mankind, I have always focused on the repentance aspect and being cleansed from my sins. I am learning now what people mean when they say “by His grace we are saved.” His grace saves me when I am feeling discouraged, tired, and scared. I am saved by the strength that he provides me. I am saved because he gives me hope.
  14. You. If you are reading this it means you care. I am grateful for your support. I know you want to help our family. One day, I will ask you to. Today isn’t that day and it’s not the right time. Until then, please stay curious. Please stay involved. Please keep praying that Beckett gets stronger and don’t ever hesitate to ask Kim and I for anything.

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by | November 21, 2014 · 8:15 am

Dru

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It’s been a few days since Dru left. It just doesn’t seem real. I replay the night and the moment so vividly. Kim was laying on our bed looking at Instagram and I was trying to get Beckett asleep. I could hear the shock, fear, and pain as the words came out of Kimmie’s mouth.

“Shawn, Dru died!”

Tears. Shock. Lots and lots of tears. Followed by fear and pain.

Since that moment I have mostly been numb. There is just too much to really feel and comprehend all of my emotions.

I have wanted so badly in her memory to post the perfect picture with the most perfect caption. Many times I have opened up Facebook to write Dru’s parents a note to bring them comfort and to tell them how much we love them. How much we admire them. How knowing them has eternally impacted our lives. Or even to simply say, we are praying for you and hope that you find some sort of peace through this hellish and nightmare of a situation. But every time I have tried coming up with the right thing to say I have actually ended up closing my app/browser with no words on the screen.

What do you say? What could I say that would make any difference? How could I possibly help at all? I think everyone has probably felt the same way at some point with some sort of experience.

imageDru was the first BA baby that we met. I remember, like it was yesterday the morning that we met Andy, Dru’s mom at the hospitality cart down the hall from our rooms at Primary Children’s Hospital. She gave Kim a hug and was so kind to us both. Dru and Andy have been the light and strength to our family. Bill, Dru’s father became my role model. He is my example of how to be a supportive husband, and how to manage your hospital child with your children at home, while managing work all at the same time. 

I only got to see Dru a few times during our hospital stays. However, it didn’t take more than 5 minutes till I fell in love with her fierce and sassy personality. She was referred to by everyone who knew her as Miss Magic. I’ve never had a chance to ask who came up with her nickname but it defines Dru in every sense. The lil lady was magical. She put a smile on everyone’s face. She changed communities of people. She impacted my family and changed me personally. Have I mentioned that she was only a year old?

Dru was one of two liver kids that we were aware of who needed a liver transplant and was a permanent resident at Primary’s while waiting for her gift of life. One received her liver on Sunday. Dru passed away on Monday and today will be laid to rest. I will never forget Dru. When I tie my running shoes I will think of #movingformissmagic. She certainly moved me. I can keep moving for her. When Kim wears her necklace that says “I can do hard things” I will think of Dru and her family and how they have gone through the hardest trial. When I pray at night, I will remember Dru and ask God to send her to watch over Beckett as he fights his liver battle. I can’t think of a more valiant warrior than Dru to protect my son.

Love you Dru. Thank you for being a light in my life during the darkest days I have lived. You made me a believer. I believe in magic.

Click here to read more about Dru and her amazing family. Please pray for them and honor her by becoming an organ donor.

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by | November 14, 2014 · 8:50 pm

I Can Do Hard Things

When Beckett was diagnosed with Biliary Atresia we were put in touch with Andy, a mom of a little girl who also has BA. This woman has become a very, very dear friend and someone who I completely admire. Through all the crap that they are going through with their daughter she is always positive and willing to lift others up. The other day, I received a gift from her. It was a cute onesie for Beckett and also a necklace that says “I can do hard things.”

IMG_7012I’ve been wearing the necklace for the last week to give me courage as we heard difficult news from doctors and now deal with stressful situations with our little warrior. And that sentence has been in my mind constantly: I can do hard things. I’ve reflected over the past weeks that we have been dealing with everything with Beckett. And I have come to the realization….

I CAN do hard things.

I can administer 6 different meds, two times a day to my baby without him spitting it out. Some of the nurses were having a hard time and it was getting everywhere. But I was able to do it. And then he started throwing up the meds. One night, we spent 30 minutes giving him meds. We finished and he threw them all up and the doctors decided that we needed to re-administer them. We took our time so he wouldn’t throw up. After we were done, I looked at the clock. Meds had taken us two hours from start to finish. That was hard. But I did it. And I’ll do it everyday for the rest of his life.

I can watch as the IV team inserts IV after IV after IV. Five in fact, all in the span of five days. One head IV, two in his left foot and two in his right. It was hard to see him like that. It was hard to see the nurses flush his IV and realize it went bad. I cringed every time I heard a nurse say his IV was sluggish. It was so hard to see him bleeding from blown veins. It was hard hearing him cry so much. But I did it. And I was there to comfort him after.

As hard as it was hearing bad news about his liver and belly, I went in prepared to hear bad news about that. I did not expect to hear that I had to stop nursing. That was a hard pill to swallow. Even once we realized it would most likely be temporary, it was still hard. It was and still is hard to pump every three hours just to turn around and feed Beckett a bottle of special formula. It takes a lot of time and that’s hard. But as hard as that is, it’s much harder to know that I can’t hold Beckett when he’s hungry. I tried. He nuzzles and tries to nurse and cries so much. It’s hard to not be able to comfort and feed him. But I can do it. I can make it through.

It’s hard knowing that I have two precious girls who need me at home and a little warrior who is sick and needs me at the hospital. I can’t be in two places at once. It’s hard having my mother heart split in two. It’s hard knowing that others are taking care of them when I so fervently wish that I was the one home with them. But we made it work. We survived. And we are closer than ever. It’s hard to know that in the future we will be apart for much longer periods of time. That thought breaks my heart. But we will do it. I can do it.

It’s hard being at home all by myself trying to juggle everything. Trying to do our everyday things like breakfast, lunch, and dinner; getting the girls ready for the day, naps, laundry, dishes and even preschool. Then adding in pumping and Beckett’s meds. And on top of all that trying to take care of myself and giving the girls enough time with me and giving them my undivided attention. The attention they desperately need. I struggle finding enough time during the day to do EVERYTHING. It’s a battle. A hard one that I seem to be losing. But I can do it. It may take me time and I may need help for awhile but I will figure it out and it will become our new normal.

If I have learned nothing else through the past two difficult weeks, the one thing I have learned is that I CAN DO HARD THINGS. I am strong. I am stronger than I ever knew. And it’s empowering. I got this.

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by | November 2, 2014 · 7:30 am

Opportunities to Do Good

Shortly after discovering Beckett’s diagnosis of BA (Biliary Atresia) Kim was introduced to Michelle Rowan by a neighbor of ours. Our neighbor had a feeling that Michelle could help us since Annie, Michelle’s daughter, received a liver transplant a few years back. Michelle welcomed us with open arms and provided us with introductions to our new liver family. These amazing liver people are so accepting and understanding of the situation we found ourselves in. We were the lone deer in the headlights and these people slowed down from their busy emotional lives and helped us find our way to a safe place.

Without fail, every time I watch the video of Annie and the experience of the Rowan family my emotions get stirred. First, I can’t imagine being in their shoes knowing that my child only has 48 hours to live without a transplant. Second, our neighborhood and friends have rallied around our family in very similar ways that Annie’s did at the time of her diagnosis and transplant. We have been drowning in the kind acts of others. The toys have been played with, the meals and goodies have been tasty, the conversations/letters and messages have brought tears to our eyes, and the many prayers in our behalf have been felt. As strange as it sounds, my faith in humanity has been restored. There are so many good people living among us. I feel the love of my brothers and sisters and am beginning to understand what it means to be a child of God and a part of a heavenly family living on the earth.

I now have a weight on my shoulders. A weight that I don’t know how to repay. There have been so many people that we know and don’t know who have helped our family. How could I ever repay all these people? How could I ever truly express all of the gratitude that I have for them? The worst part is, I know I have more to ask of these individuals. It’s painful. I’m not accustomed to asking for help. It’s humbling to realize that I can’t do this by myself.

What I have learned through all this is that because of others I will look for opportunities to do good, to show people I care, and to jump in on big or small acts of kindness. There is a fire burning inside to pay it forward. It’s because of others that I now know more than ever that one prayer, one thoughtful message, one hug, or one single smile can make all the difference. I hope that one day I can be the difference that others have been for Kim and I.

Please share with us an act of service that others have provided for you that you are grateful for. We would love to hear your stories.

Written by: Shawn

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by | October 31, 2014 · 2:39 am

11 Days of Dishonesty

It’s dark. It’s late. I’m tired. I can’t fall asleep because I can finally feel. In this moment my net is wide open and vulnerability is scoring. It’s been 11 days since I subconsciously put the wall up. 11 days since a tear was shed. It’s been 11 days since I have felt honest with myself and my emotions.

It’s a necessary evil to make the decision not to feel. It seems to make talking to others about Beckett’s liver disease more comfortable. It makes it easier to play the situation off as a natural part of life. It also shows I am strong and faithful. Or does it? Does it really do all of those things when deep down inside I am scared shitless? When every single time I change my sons diaper and see his giant scar across his ever expanding abdomen. Or when he smiles at me and I look him in the eyes to smile back and all I can think of is, “agh, his eyes still look yellow.” What about when others kindly ask, “how is Beckett doing?” and I have to sheepishly admit that I have no idea. As his father, I have no idea how Beckett is doing. What I can tell you is that he is still yellow and he blows out of 3 outfits everyday because we are forced to use a bigger size of diaper than a kid with his weight would traditionally use because his stomach is huge.

Ask me about one of my other kids, I will tell you exactly how they are doing because they are healthy and they are living their lives the way they should be. Or are they? Is it normal for your four year old (Adalyn) to ask you every morning if Beckett is going to see the doctor that day? Which we have learned is her way of asking if Grandma is coming over so Mom and Dad can go stay at the hospital for days. She also thinks that it’s now perfectly normal for people to show up at dinner time with bowls of food for us to eat. Is it normal for your two year old (Raemee) to walk through every room in the house screaming your name and crying because she didn’t see you walk downstairs to change the wash? No, it’s not. Why? Because the first two years of her life she didn’t care what part of the house you were in because she wanted you out of her business. Nowadays all she seems to care about is my approval of her.

So here I am finally being honest for the first time in 11 days. I’m scared. I’m terrified that I may lose my son someday because he won’t get the liver that he needs. I’m nervous that a transplant will have complications and he rejects the new liver or that his body makes him pay the price for having a transplant. The unknown date of this future event seems to haunt me. I’m not just scared for Beckett. I’m worried about Kim and the burden that she has to carry as the mother of our home. I’m sensitive to her emotions and feeling but don’t know how to help her. I’m worried about Adalyn and Raemee and the lives they will have to live now that their brother has freakin’ Biliary Atresia. The mysterious disease with an unknown cause that can only be cured by receiving someone else’s liver. You want honesty, ok. It hurts. It sucks… And I feel like as the provider of my home I am failing to provide my family with what they need. I can’t just go to the shopping mall and pick up a liver for my son. I can’t stay home from the hospital with the girls and leave Kimmie by herself in that depressing building of pediatric medical miracles. Which means I can’t stay home to provide my girlies with the parental love and comfort that they have grown accustom to their whole lives and deserve.

So now what? I guess I hit the lights and rebuild the wall in my sleep. When I wake up in the morning I guess I will be feeling, OK.

Written by: Shawn

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by | October 26, 2014 · 8:30 am

Little Warrior

IMG_6708When we first started figuring out what was going on with Beckett, I posted a picture to Instagram about what we had experienced. I mentioned that Beckett was going about everything with such a happy demeanor and I called him my little warrior. I don’t know why that word popped in my head specifically instead of a more common word like fighter. But it came so clearly. He was a warrior. I’ve pondered a lot lately trying to figure out why that word was so important. As I was thinking about it last Wednesday, a story in The Book of Mormon: Another Testament of Jesus Christ about the 2,000 stripling warriors came to mind. I decided to make that the object of my scripture study the next day.

It just so happened that Thursday, Shawn took Addie to preschool and Beckett took a long nap. We had a very quiet morning and I was able to spend some good time with my scriptures reading the story of the 2,000 stripling warriors and thinking about it. This story is about a group of people who after repenting of their wickedness, made a covenant with God that they would never take up arms again. Well war came upon them. Their brethren were fighting for them and they felt bad because they weren’t helping. They were about to take up arms and fight when their sons (who had NOT made the covenant) said that they would go to war for their fathers. As they fought, they were injured but NOT ONE of the 2,000 sons was killed in battle. What I learned from reading this story was amazing. It has changed the way I view our situation.

I started in Alma Chapter 53 and got to verses 20-21.

20 And they were all young men, and they were exceedingly valiant for courage, and also for strength and activity; but behold, this was not all—they were men who were true at all times in whatsoever thing they were entrusted…

21 Yea, they were men of truth and soberness, for they had been taught to keep the commandments of God and to walk uprightly before him.

Then I moved to Alma Chapter 56:46

46 For as I had ever called them my sons (for they were all of them very young) even so they said unto me: Father, behold our God is with us, and he will not suffer that we should fall; then let us go forth…

Here Helaman (their commander) is describing these young men. I felt so strongly in my core that this is Beckett. I believe that my little man is so courageous and is doing much better with this situation than either Shawn or I. It doesn’t matter that he is a two month old baby. I remember when he first smiled at us after his surgery. There was a look in his eyes. He had this. He was ok. It was like he was telling us that he was fine. His courage strengthens mine. And then I read that last line again, “Behold our God is with us, and he will not suffer that we should fall; then let us go forth.” How true this is. Our God is behind us. He will watch over us and protect us. Those 2,000 warriors knew that and they went forward in faith. Beckett is the same. He is so happy and trusting, even with the scary things that have happened to him.

I then moved on to Alma 56:47-48.

47 Now they never had fought, yet they did not fear death… yea, they had been taught by their mothers, that if they did not doubt, God would deliver them.

 48 And they rehearsed unto me the words of their mothers, saying: We do not doubt our mothers knew it.

Now I have read this story many times in my life. I have always thought of how amazing those mothers were. But reading it this time with Beckett in mind, it struck me so differently. I am now the mom of a warrior. This is me. This is my responsibility. And in order for me to teach my son, I need to believe this. And live it. Faith. It all comes down to faith. Their mothers instilled such faith in them that they were willing to go into battle. I want my son to be strong. I want him to be able to handle things with courage and with happiness no matter how bad things get. And in order for that to happen, I need to be the example. By this point I was in tears. I felt such a greater love for those mothers. I knew that I wanted to be just like them.

At this point in the story, these young men went to war. Alma 56:56 reads:

56 But behold, to my great joy, there had not one soul of them fallen to the earth; yea, and they had fought as if with the strength of God; yea, never were men known to have fought with such miraculous strength; and with such mighty power…

And then moved to Alma Chapter 57:21, 26-27.

21 Yea, and they did obey and observe to perform every word of command with exactness; yea, and even according to their faith it was done unto them; and I did remember the words which they said unto me that their mothers had taught them.

26 And now, their preservation was astonishing to our whole army, yea, that they should be spared while there was a thousand of our brethren who were slain. And we do justly ascribe it to the miraculous power of God, because of their exceeding faith in that which they had been taught to believe—that there was a just God, and whosoever did not doubt, that they should be preserved by his marvelous power.

27 Now this was the faith of these of whom I have spoken; they are young, and their minds are firm, and they do put their trust in God continually.

I started to think of Beckett’s future. Oh how I wish this for him. He has already proved to be so strong but I pray that he can fight with the strength of God as he undergoes many challenges in his life. I know that he can have a wonderful life despite the health issues. I love that last verse because I can see my son in it. He is young. His mind is firm. And I can see him putting his trust in God for the rest of his life. I know God is there for him. Christ knows exactly what Beckett has been through and what he will endure. He knows it perfectly and is the perfect person to rely on through all this.

That’s not to say that we aren’t going to have hard days. We will. Probably a lot of them. We are going to struggle at times. But if we will trust, if we have faith in our Savior, we will conquer whatever comes our way.

I love my son. I love him so deeply that I will be strong for him. I will teach him what I know. I will teach him faith. We will make it through this together.

Written by: Kimber

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