To the exhausted and scared parent: you’re not alone. 

Since Will was born I feel like I live in the hospital. My daily routine consists of waking up, getting ready going to the hospital until around 10:00pm at night, going back to the RMH doing homework or laundry or anything else I needed to do that day and then go to bed. Most of my time in the hospital I spend with Will, and since the bed spaces are so small in the NICU we sometimes have interactions with other parents. Some of it is from introducing ourselves and other times it is just seeing a sad, depressed look just a few feet away. 

Just recently in by Will’s bedside a new baby was admitted to the NICU. Ben and I were changing Will’s diaper, taking his temperature, fixing chords and such as a nurse approached our bedside and said; “there is going to be a bedside surgery so you two will have to step out.” I knew it was for the baby across from Will’s  bed and I couldn’t help but looked at the parents. Ben responded to the nurse; “a bed side surgery? They do that?” The nurse replied; “yes, when it is an emergency.” Ben and I then walked out of the NICU to wait for the end of the surgery and as I passed the parents were talking with the surgeon, their faces drained with fatigue I could tell they haven’t slept in a long time. 

The sad part is, I see it all the time. It’s a constant battle, trying to find the balance between trying to make a good medical decision and trying not to cry and completely loose it. Your emotionally drained, physically drained, and completely exhausted. But you don’t care, because it’s your child. You’re okay not sleeping, crying your eyes out, or not eating because all you want is for them to be safe, happy, comfortable, and okay. 

In Elder Rundlund’s talk, Through God’s Eyes, he says; “My associates and I worked for a long time to restore his circulation. Finally, it became clear that Chad could not be revived. We stopped our futile efforts, and I declared him dead. Although sad and disappointed, I maintained a professional attitude. I thought to myself, “Chad has had good care. He has had many more years of life than he otherwise would have had.” That emotional distance soon shattered as his parents came into the emergency room bay and saw their deceased son lying on a stretcher. In that moment, I saw Chad through his mother’s and father’s eyes. I saw the great hopes and expectations they had had for him, the desire they had had that he would live just a little bit longer and a little bit better. With this realization, I began to weep. In an ironic reversal of roles and in an act of kindness I will never forget, Chad’s parents comforted me.”

I have never felt more stressed, sad, frustrated, or upset in my entire life than I have the past six weeks. But I can’t help and imagine the feelings that Heavenly Father feels for every one of us as we struggle, and we hurt and have our own limitations. For most of the day when I am with Will, I pull his crib side down and I find a short chair where I can lay my head next to him in his crib. Since Ben and I are not able to hold him, or see his face most of the day I feel that is the closest I can be to Will. When I watch him, every time he has trouble I am immediately at his side ready to help in anyway I can. I know that Heavenly Father is the same way with us. That he watches us and is there at any time we need help or are in need. He helps us through his son, Jesus Christ who understands out pains perfectly. 

So, to the exhausted and scared parent I want to say; you’re not alone. Whether your child is perfectly healthy at home, sick in a hospital bed, away from home with his/her own family or whatever the situation may be; I tell you that not only are there other parents going through hard times too, there are people to help you. I think the most beautiful love is the love of a parent for their child. 

And to the parent whose child is not healthy and at home; you’re not alone. You’re devotion and efforts to help your child are not over-looked. Everything will be okay in the end because of the Atonement. Children are protected, loved, and cared for. It’s hard, and you can’t understand why you’re child has to go through this while others don’t. You would do anything for your child just to take that pain away. I have a testimony that Heavenly Father feels the exact same way about your child and you.  

My Family isn’t Perfect 

There is this cliché I’ve been seeing around that says; “happiness is a choice.” And I usually just ignore it but lately I’ve noticed that it is so true. I think part of overcoming the natural man is overcoming our instinct to feel sorry for ourselves and to immediately feel depressed or sad in situations that we can’t control. Many times during our adventure and journey with William, Ben and I were put in situations beyond our control. Recently, Will had an emergency surgery that was the most stressful day of both Ben and I’s life. I remember watching the surgrgeons taking Will down to the operating room with Ben right behind them, and I was feeling completely, and utterly useless. There was absolutely nothing I could do but sit and watch. In that moment I felt sad, depressed, useless, and angry that there was nothing I could do for my baby. For a while after this experience I remember trying to think of ways that I was the cause or things I could’ve done to prevent his emergency surgery from happening. Then one day I just looked at my situation; I was far from home, from my own bed, from my dog. I wasn’t able to hold my baby whenever I wanted to. I had no idea when I would be able to take Will home. But as I looked at my situation and looked at myself I realized that staying mad, staying upset, trying to find out why everything happened wouldn’t help me at all. 

Yesterday Ben and I attended church in the hospital. They hold a short 30 minute sacrament meeting in a little auditorium room. Some people dress up, some people don’t, some are staff from the hospital others are parents. Children who are staying in the hospital sit with their IV poles and wheel chairs and wait for the sacrament. It was the most spiritual sacrament meeting I have ever attended, and couldn’t help but be overwhelmed with gratitude toward my Savior and my Heavenly Father for the very imperfect, but very beautiful and wonderful family I had been given. The branch president spoke to the children about the atonement and how the Lord has atoned not only to save us from sin but to help us in times of need, in pain, and sickness. He also explained how Heavenly Father administers Angels to us in times of need, now some are seen and some are unseen. I thought of Will’s nurses, doctors, and surgeons who care for him and watch over him with such dedication and love for him. I thought about many of my family members who have passed away that also watch and care for Will. Most of all, I remembered the love that God has for Will and the Love our savior has for him too. 

So, when I feel useless, and stressed about the situation that I am in and how I cannot control it, I have to remind myself that here is good. Life is okay. “Come what may, and love it.” Because of the Atonement of Jesus Christ all will be made perfect again. But for now, it’s okay. Don’t stress about things we cannot control, but instead think of things you can control and focus on that. 

11 And he shall go forth, suffering pains and afflictions and temptations of every kind and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people. 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. Alma 7: 11-12

Faith in the Lord Jesus Christ

Yesterday was the scariest moment of my life, so far. I say so far because I’m only 21 years old, Will is my first child, and I have a long life ahead of me. I don’t doubt that there is more in store for our little family.

Ben and I had taken a trip to Rexburg on Friday in order to see our dog, and drop some things off, and pick up some things that we needed from our apartment. We were nervous to leave Will but my sister was able to stay with him for the day. We didn’t get back home until late Friday night, probably around midnight. We stopped by the hospital, said prayer and read scriptures with Will before we left. We said to each other “we are going to sleep in tomorrow and try to get some rest.” because this is the most sleep deprived we have ever been. We didn’t go to bed until late around 2am because we stayed with Will, talked with some nurses, and honestly didn’t want to leave him. 7am the next morning we got a call from Primary Children’s saying; “Will’s surgeons are concerned about his head and are wanting to take him down to the OR.” Ben and I haven’t showered in 2 days, we quickly grabbed some clothes we found off the floor and were at the hospital in a couple minutes. He was taken to the OR shortly after, the only reassuring thing helping me was the words from the anesthesiologist after I had asked him how they planned on putting the breathing tube in for Will. He said; “I will figure it out, that’s my job.” Ben walked with the doctors and Will down to the OR while I sat outside the NICU doors waiting for Ben to come back. As I sat there I remembered once when I was younger, I had meningitis and my parents rushed me to the ER. They had to do a spinal tab, which they put me to sleep for. My mom told me later how she needed to leave the room because she couldn’t see me the way I was in that hospital room.

Not many parents go through what Ben and I have from the moment Will was diagnosed at 23 weeks in my pregnancy. But that’s just it, this is our new normal. I didn’t wake up one day, look at Ben and say; “Let’s have a baby with medical problems.” of course not. This wasn’t something we chose, this is something that happened. Nothing caused this, it was no one’s fault. This is life, this is what we need to do, and we can’t compare our situation because its not like anyone else’s.

Ben and I are staying at the Ronald McDonald House (RMH) in Salt Lake. People donated money and built this house for families that go through many different things. A lot of families in this particular RMH have children at Primary Children’s Hospital, but they live far away like us. One morning I remember getting overwhelmed by the children I had seen. They have a community kitchen, and I was sitting at one table as Ben was getting our breakfast. I saw a mother grabbing some toast while her daughter sat in her stroller with a feeding tube down her nose. I saw a father helping his son play a game while his daughter sat in a wheel chair unable to control her movements with casts on both arms. I saw a mother sitting next to her son who sat in a wheelchair, a blanket draped over his legs, his head had no hair from his cancer treatments and I hear the mother say; “We are so excited for his bone marrow appointment next week!” If you never have to see your child in any kind of distress like this, get on your needs right now and thank Heavenly Father for the healthy child you have. I don’t know how many times I thanked Heavenly Father that Will is as healthy as he is.

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him.” -Elder Russell M. Nelson. Quoted from Ronald A. Rasband’s talk “Special Lessons.”

I have a personal belief that there isn’t always a cause for everything. I believe that William had the abnormality that he does simply because we live in an imperfect world, and have imperfect bodies. I know that Ben and I did nothing to cause this impairment to our son’s head. And because of this I ask myself why it had to be him, why we had to watch our baby suffer from an imperfect mind and body. And the answer I get every time I ask myself this is simply because this is an imperfect world, and we are all imperfect. As I watch Will battle the struggles and trails that his body gives him, I ask myself what an extraordinary, strong, wonderful spirit he is to push through his imperfections. He is only almost a month old, and he is the strongest person I know. My testimony of Christ has been strengthened every single day as I watch William overcome every single obstacle that is in his way. My testimony of the Atonement has never been stronger, as I am strengthened myself by Christ and many angels He sends our way. Jefferey R. Holland says; “there is help from both sides of the veil.” This is not the end! This is not what forever will be like.

“I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord Jesus Christ! With the Apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last.”12 Until that hour when Christ’s consummate gift is evident to us all, may we live by faith, hold fast to hope, and show “compassion one of another,” I pray, in the name of Jesus Christ, amen.” – Jeffery R. Holland, Like a Broken Vessel.

I also testify of the wonderful Atonement that has been made available to all of us from the selfless love of our Savior Jesus Christ. I know that Christ atoned for our sins, our afflictions and our sufferings. I know that as I stared at my son in fear, scared for him and what could happen to him Ben and I were not alone in that room. Christ was there and he was with us from the beginning. I know the love that God and Christ have for both Ben, me, and Will. I know that this is not the end, that we will one day be freed from heartache, suffering and pain. I know that faith in the Lord Jesus Christ as saved me, has helped me, and has continued to strengthen me even when I feel there is nothing else I can do. Life is not easy, not for anyone, but continued faith in the Lord is what keeps us going to bigger and better things.

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Lessons From Will: What I Learned In Two Weeks

Will is now two weeks old today! It was so surreal and amazing to me that just two weeks ago Ben and I were expecting the worst, we were even expecting that if Will did survive we would only be able to be with him for a short period of time but not only is he alive, but he is thriving! He is seriously is the strongest little person I have ever met. Here are some lessons that I’ve learned from Mr. Will!

Gratitude
I don’t think it’s a secret that life throws curve balls at us, and sometimes we want to just lay in bed asking God, or the universe; “Why Me?” We’ve all been there. I usually grab myself some ice cream or cheesecake and watch some netflix in bed. One little thing happens to me and I just want to give up! I’m done. But as I have watched Will day after day continue to fight for his life, I become humbled and thankful for my life, my body, and my family. I remember the day William was born, I was recovering in the maternal unit, where women had just come from having their own babies. These women had their babies in their rooms with them, they were able to breastfeed, spend the night with their baby, hold their baby whenever they wanted. I wasn’t able to even get out of bed to see Will until the day after my c-section because he was across the bridge at Primary Children’s Hospital. But I was so happy. I didn’t care that I was the only women in that unit with my baby at the Primary Children’s NICU, I didn’t care that I couldn’t breastfeed, and I didn’t care that I wasn’t able to hold William whenever I wanted because he was alive, and I was all that mattered. I think in that moment I understood what true gratitude meant. Because it’s not about looking around at others and saying; “well, at least I have it better than them.” But looking at yourself and saying; “Life is great, I got it pretty good.”

Resilience
From the day Ben and I found out about Will’s brain deformity, he has proven doctors wrong. He has been given every tool to not be able to move, eat, crawl, cry, or even be alive, but he has tried his hardest to overcome the obstacles in his way. There is a quote that says; “It’s not about how many times to get knocked down, but how many times you get back up.” I look at Will and think about that every time I see him. He continues every day to surprise doctors, nurses, family, and even his own parents at what he can do because with his brain abnormalities, he shouldn’t be this strong, this interactive, or this capable of so many things. I see him every day defy the odds, and see how resilient he is. When life takes a turn, and knocks us down sometimes we use the excuse of our adversity to not do the things that can actually help us to overcome and succeed. Sometimes we get knocked down, and we stay down because, well, who can blame you? But if we want to change ourselves, become stronger, or change the situation that we are in, we need to continue no matter how much we continue to get knocked down.

Trusting In the Lord
I have a big problem with this, because I like to plan things. I am a big planner, and I can’t not know what is going to happen or it stresses me out. During this trial, it was hard to find a balance between having faith, but not getting our hopes up too high and expecting Will to survive. I remember praying to God asking him to please tell me what was going to happen, and instead I got a feeling that everything was going to be okay. This made me so mad! But, I guess the whole point of faith is to trust that everything is going to go the way it is supposed to. Ben and I have had to constantly rely on trusting the Lord every hour and every second that Will has been in the NICU. When Will had his surgery, Ben and I had big decisions to make concerning what his doctors would do concerning his head. Many prayers were said, many sleepless nights of worry that we would make the wrong decision. The day of his surgery we felt good about the choices that were made, and we prepared for the worst case scenario. Literally minutes before surgery doctors had already told us that certain procedures that we chose to do were not needed because of how well he has been doing. This to me was a testimony of trusting in the Lord, until the very end. Things may not make sense in the moment, you may ask and plead for something to happen but all that is given to you is a feeling that everything is going to be alright. Sometimes, we won’t know until the next life how everything is going to work out. But we must trust in the Lord Jesus Christ, he is the only way to true happiness, peace, and comfort. Because of him, everything will be made right in the end.

Don’t Compare Your Situation to Other’s
During my pregnancy I had a hard time not comparing my situation to my friend’s situations. I was the only person among my friends that had a serious medical problem with my baby, and everyone else around me was having a grand time with their pregnancies and healthy babies. It was easy for me to become depressed, upset, jealous, sad, and bitter about my situation. It wasn’t until I got out of Rexburg and around other families that had babies in the NICU. When Will survived, and was doing so well I stopped caring about other’s situations. I was around many mother’s in the recovery unit who had their babies with them and all I could think about was how happy and excited I was to go down to the NICU to see my baby. Ben and I have made many friends from other parents who have babies in the NICU and we are very supportive of each other. I never compare my baby’s problem to someone else’s instead we express our excitement or our disappointment and we exchange words of encouragement to each other. I have found myself a lot happier, and more aware of Ben and Will when I stop comparing myself and focus on my life and the task that I have.

Will is a remarkable baby, and person, I am so grateful to have him as my son and to be with him through this journey in his life. I have learned so much from this experience and will continue to learn more as the days, months, and years go by. I would like to share my testimony of the eternal truth of God’s love for us. He is aware of us, he knows who we are, and he is always there for us. No matter our situation, even if we are healthy or sick, sad or happy, alone or surrounded by people the love God has for us is always there and always real. The Atonement of Jesus Christ is the only way to true happiness, and the only way for us to return back to our Father in Heaven, which is our ultimate goal. Just like it is our goal to get William home, it is Heavenly Father’s goal to get us home as well.

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