Lessons From Will: Service

Ben and I have learned a lot of lessons since we were told William had his birth defect. We learned more about each other and ourselves. But this one is one that has been a constant lesson, and one that has changed. Ben and I were good people, we served others, but it was the bare minimum. I didn’t think it was bad, I thought I was such an amazing person. It wasn’t until I was put in the place where others have served my family when I realized I wasn’t doing the absolute best I could.

Just a couple days ago Utah got a couple inches of snow, we woke up around 8 am and Ben needed to go out into the parking lot and shovel the ground to get his car our so he could get to work. I stayed inside and got William ready for the day. It was hard work, it was cold, but Ben was determined to get our car out of the snow so he wouldn’t get stuck, he also shoveled our second car so I would be able to take Will to his therapy appointments. Ben came inside after about an hour to take a break. we were upstairs I was getting Will’s food ready and our bedroom window was open. Behind our town home you see another apartment building. There was a girl, trying to shovel herself out with a broom and only getting more and more stuck in the snow. Ben, after shoveling two cars out of the snow by himself, stood up and said; “be right back, I’m going to let her borrow our shovel.” He went downstairs and handed her the shovel, then talked with her for a bit. She explained how she has never lived in snow before and really have to get to work because she missed work the day before and couldn’t afford to miss another day, or be late. After a little while I looked out the window again to see Ben deep in snow pushing this lady’s car by himself. It took almost an hour but someone else came by and helped them. Ben got that lady unstuck from the snow and then returned back to his own shoveling by himself.

I was very impressed and touched by this. Ben has always been a selfless person but it went to a new level since we had Will. Once, we were right down the street from our home, coming back from the hospital, when Ben got a message from a friend who needed someone to help with a blessing at the hospital which was 30 minutes away. Without saying anything, Ben turned around and headed back to the hospital. He never told his friend that we were close to home, but instead thanked his friend for allowing him to be apart of a wonderful blessing for his son, and thanked him for asking him to help with the blessing.

Ben and I were driving home from the hospital one night, it was when William had a 2 month hospital stay. Ben looked at me and said; “I want us to raise our kids to just serve. If they have a thought or a feeling to help someone that they will just do it and not think so much about it that they end up not doing anything. I want our kids to stop asking if someone needs something but to pray and let the spirit guide them in what they should do. And I want our kids to know that they should never post-pone a prompting.” I agreed, and we decided that later down the road we were going to do more service projects, visit hospitals, and do more good for people. Buying someone dinner out of the blue, giving someone a present, visiting someone in the hospital.

Many of our church leaders have addressed many times the importance of listing to the spirit and making sure we act on it. One of my favorite quotes is from Elder Rasband;

“Paxton’s family has learned they are surrounded by countless heavenly and earthly ministering angels. Some have quietly slipped in when needed and silently slipped out. Others have been at the door with food, doing the laundry, picking up the siblings, calling with encouragement, and especially praying for Paxton. Thus another special lesson learned: If you come upon a person who is drowning, would you ask if they need help—or would it be better to just jump in and save them from the deepening waters? The offer, while well meaning and often given, “Let me know if I can help” is really no help at all.”

Dallin H. Oaks talks about the concept of good, better, and best.

“We should begin by recognizing the reality that just because something is good is not a sufficient reason for doing it. The number of good things we can do far exceeds the time available to accomplish them. Some things are better than good, and these are the things that should command priority attention in our lives.”

It is good to pray for someone, it is good to let them know you are thinking of them, it is good to like a picture or comment on facebook. It is better to offer to help, it is better to ask if someone needs help, it is better to comment and call frequently. It is best to visit, it is best to listen to the spirit, it is better to act, it is better to do some service to help them without asking or without them expecting it.

In our lives, we focus on Will. So when someone says to is; “please let me know if you need anything.” Is wonderful, but since my attention is on my son and all that he is going through I don’t often think about asking people to do things for me. That is why praying and listening to the promptings of the spirit are so important. Heavenly Father knows everything we need, and because of that he is the best source to go it when asking what someone needs. Or, if you have a random impression don’t post-pone it or shrug it off. Pay attention to it.

During our adventure with Will, we have had people who we barely know give us presents, give Will blankets, bring us dinner, and just send uplifting and happy letters of encouragement. My family lives in Texas, so Ben and I don’t have family support near-by. Its hard on us, but to meet people who are like family is wonderful. The Lord has put certain people in our lives to help us when others have fallen through. He watches over us and helps us. Our ward, the PCH branch, and many friends have stepped in where we needed help. Doing out laundry, watching our dog, doing our dishes, visiting us, or checking on us every day. It have kept our spirits, and hopes up. We are grateful for the spirit that guides us and the people who are willing to listen.


The Worst and Best Year of My Life

In January of 2016, I posted this instagram photo welcoming the new year;

20 days later, we were told the worst news of our lives. Our baby wasn’t going to live past 30 weeks of my pregnancy, and if he did live full term he would die shortly after birth.

The next four months of my pregnancy Ben and I both attended school and BYU-Idaho, we both worked, and we visited Salt Lake City for specialists appointments I think 4 times… ?

We became dog parents to the best, cutest, and most supportive dog in the world! We love you Blue, you brought to much joy into our lives during a stressful and sad time.

We moved to a new apartment just across the street from our old one. We had the most supportive friends and ward we could have ever asked for. Many times we would have blissful moments where we would forget about our bad news and we would feel like a normal couple just waiting for their baby to arrive. But many times Ben and I had to comfort each other as we were reminded of the horrible reality of our child’s low chances of survival. During these four months I fell more and more in love with Ben. Often times Ben and I would walk to class together holding hands and talking about Will, there was one day in particular where I looked around at the other many married couples also pregnant. Many would smile at me, seeing my pregnant belly and most likely thinking; “She’s pregnant! I’m so happy for her!” But not knowing that we were actually discussing our child’s predicted death. Ben was talking about something I can’t remember and I began to feel extremely depressed at our situation. I then looked at Ben and after feeling incredibly depressed I felt a feeling of love and gratitude that I didn’t have to go through this alone, and someone else was going though the same thing I was. We were a great support to each other, Ben was a wonderful husband to me, and I feel eternally grateful he is my husband.

At this point 2016 was the worst year of both Ben and I’s lives, and we both anticipated it to continue to be the worst year, ever. As many of you know, I had a planned c-section on May 17th and William was born thriving. Against all odds he was surviving and didn’t need any life support, breathing tubes, or anything. We welcomed William to the world, and found out fast that, unlike what we were expecting, he was going to stay with us for a long time.

William stayed in the Primary Children’s NICU for 2 months (where we met wonderful NICU nurses who would become wonderful friends to Ben and I and Will) and then was transferred to the Infant Unit the last two weeks of his hospital stay before be came home for the first time. During this time he had 4 surguries, 2 PICC lines, and 1 EVD. He came home for the first time when he was almost 3 months old. Ben and I, during this time, had decided to move to Utah from Idaho when William had his emergency surgery. We came to the realization that although William was thriving, this defect was so rare and needed a lot of medical care. Rexburg, Idaho was unfortunately too far away for what we felt comfortable with. We moved to Bountiful, Utah in July. We found our new home after praying in the car, we were feeling helpless and were driving around Bountiful applying to anything we could find. We came across these cute town homes, and had a contract signed the next day. Ben found a job the same time and everything fell into place. We later met our wonderful ward family who would be one of the greatest supports for us during our roller coaster ride with our new special needs son, next to the many friends we met in the Primary Children’s Hospital Branch and friends we knew before hand.

William was home for a month and then was put back into the hospital for another 2 months. He stayed in the Infant Unit where we got to know even more wonderful nurses who treated William so well. During this time our ward family would take care of our home and Blue while Ben was at work and I was at the hospital with Will. Many prayers were answered through faithful friends and ward members, which Ben and I are eternally grateful for. William came home from this hospital visit and has had two more hospital stays that have lasted for 4 days which feeling like nothing to us haha. William has had a couple ER visits but nothing major.

William had his baby blessing on December 21, 2016. We always thought we would bless him in the hospital right before he passed,  but instead we were able to bless him in our home among family. It was a beautiful and spiritual experience. We are so happy we were able to have this experience with our baby.

William had his first Thanksgiving and Christmas with us at home, which is a miracle in itself thanks to dedication to William’s wonderful surgeons and prayers from many supporters, family, and friends.

Overall, this year is summed up as the worst and best of my life. I don’t know how that is possible, but that is the only way I can explain. I have experienced my biggest fear, and my happiest moment. Ben and I have expanded our medical education which we hope to continue to learn more, we have become fierce vaccine advocates, and have developed a greater desire to serve just as the Savior has. As nike would say; JUST DO IT, JUST SERVE! We have become more aware of others and less involved with ourselves. I have developed a deeper and more loving relationship with my husband, and I have grown my faith and love for my Savior and Jesus Christ. I don’t know what it is, but there is something about trials that can either bring out the best or the worst in us. If we choose to rely on the Lord, Jesus Christ, we choose to be happy, and we choose to stay positive, amazing things can happen. 2016 and I have a love-hate relationship, but I wouldn’t change a single thing! Here is to 2017 and all the amazing events we will experience, lessons we will learn, and people we will meet. Its going to be a great year!

My Testimony

William was born May 17th 2016 at the University of Utah Hospital. I had a planned c-section that morning at 9:30 am. The night before William’s birth Ben and I met with family for Will’s anticipated death the next morning. Ben and I had a mortuary picked out, a casket and a date. We met with many people to help us create a birth plan for Will. Because of the way Will developed in the womb, doctors anticipated that William would not breathe and would immediately have to be intubated and put on life support. Ben and I decided that we wanted all intervention in order to stabilize Will until I was ready to see him and hold him. We would give him a name and a blessing and then take him off life support and be with him until he passed.

On May 17th Ben and I woke early that morning and drove to the hospital by ourselves, we talked on the way there about how peaceful we felt. We didn’t feel like Will would live, we just felt like everything would be okay, as members of the LDS church we believe that even though Will would most likely pass away that he was still ours, and we would be able to be with him forever. That truth is what got us through the terrible months of my pregnancy, the eternal truth that families are forever no matter what happens.

In the U of U hospital there is a little window in the operating room where babies that immediately need to go to the NICU are passed through. I knew I wouldn’t get to hold Will for awhile after his birth and I knew he would be sent immediately through the window. During the c-section Ben occasionally glanced over the curtain to tell me what was happening, the moment finally came when Will was born, “there he is, definitely a boy.” Ben’s comment was immediately followed by a sweet, beautiful, baby’s first cry. This was a wonderful moment for us because we were expecting Will to come out not breathing, but he was. My doctor came around the curtain to show Will to me, and then show me his head and within seconds he was transferred to the NICU. We waited for the NICU nurses to come get Ben so that he could see Will and give him a father’s blessing right after birth. When the nurse finally came she said; “We are ready for dad.” and then she came into my view and said to me; “mom, he’s breathing on his own.”

The spirit was so strong in that moment I bursted into tears, the anesthesiologist probably felt super awkward but I didn’t care. From months of thinking and anticipating our baby would die, he was alive.

This picture is me in my recovery room at the U of U hospital in Salt Lake City, Utah. It was the first time I was able to touch Will and meet him. He was transferred to Primary Children’s Hospital NICU shortly after we met.

I wanted to share William’s birth story not as a “look how everything turned out so great” thing, but to express how our faith in the Lord’s plan and in Jesus Christ is not because everything turns out great and wonderful, but because its true. No matter the outcome. We must have faith even when things are really bad, even when we may not see the end or understand whats happening. I don’t think I felt peaceful before William was born because the spirit was telling me he would live, it was because during my pregnancy Ben and I made a choice to rely on the Lord, to believe in His plan, and to rely on the Atonement of Jesus Christ.

“If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.” Daniel 3:18

If you want to know more about God’s plan and what helped Ben and I through William’s diagnosis visit www.mormon.org or www.lds.org

“ye have done it unto me.”

40 And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

Matthew 25:40

Tuesday, September 20 William’s plastic surgeon decided last minute that we wanted to operate and close Will’s head. This was a last minute operation and we were not prepared. We knew it had to happen, and we knew it was a good decision so we went forward with it anyway. Ben was nervous because he couldn’t take work off, he didn’t want me to be left alone as William’s surgery was taking place. I asked my visiting teacher that day if she would sit with me during Will’s surgery. She sat with me from 2:30 pm until 9:30 pm. Ben and I stayed the night at the hospital, and we were brought clean clothes the next morning by my visiting teacher’s husband on his way to work. Ben and I spend countless hours at the hospital with Will, and we are worried about who would take care of our dog; my visiting teacher said to me; “Take care of your baby, I can take care of your dog.” She has five children who all have medical needs and she has them come to our house and take blue on walks, they feed him and play with him so Ben and I can be at the hospital with our baby. In our ward there are people bringing us dinner while we are at the hospital, we always come home with food in our fridge. Some of them don’t even know us.

I cannot express the importance of service. Service is when we act as the Lord’s hands, when he is able to act through us to show someone how much they are loved and cared for. I have had the privilege my entire life to serve others and have others serve me. It is a witness of the love of Christ. I have had people sit with me during surgery, drive me to the hospital when I didn’t have a ride. Watch our dog while we were away, bring us food, do our dishes. The people that have made the most impact on Ben and I’s life through service were the people who didn’t think about what they were going to do, who didn’t say “you can always come over if you want.” or “let me know if I can help.” No, it was the people that did something. The people who did our dishes without us knowing, put food in our fridge when they didn’t know who we are. Who said; “go to the hospital and be with Will, I will take your dog.” Who offered to watch William so Ben and I could go to the temple. Just serve.

If you have the thought come into your head to do something, do it. Don’t make excuses because chances are its the spirit trying to have you act as the Lord’s hands. We find excuses for ourselves; “I live too far away.” or “I have children of my own,” or “well, they wouldn’t like that anyway.” The adversary will tempt us to not serve others, and we must not allow him to win. We need to act as the Lord’s hands, when we feel a prompting to call someone, bring someone flowers, watch someone’s baby, do someone’s dishes, clean someones house or whatever it may be you are doing it with the Lord right beside you. You serving someone is the Lord telling, and showing that person that he is aware of them, He loves them, and He is there. Many times I have had the opportunity to serve others and it is a blessing to see the spirit present, you realize pretty quickly while your serving that it’s not about you. When you see the gratitude and happiness in someone’s eyes when you give them a blessing, or your bring them lunch, or you sit and talk with them, that they feel the love that Christ has for them. Christ is saying; “I am here, I am aware of you, I love you.” through your acts of service.

After William’s first surgery on September 15, he had problems breathing. There were three times when William turned blue, and a nurse needed to put a breathing mask over his face and give him breaths. That night Ben and I stayed at the hospital because we were too stressed to leave, we were in the Pediatric ICU hoping that he would recover. A representative from the branch came late that night (around 11pm) to assist Ben in a blessing. In that moment I was overwhelmed with the love that my Savior not only felt for my son, but for me. I have always felt everything was about Will, and it always has been. Very little times have people asked me how I was doing, how Ben was doing, or given us a break and we didn’t think about it because we were so focused on Will. But that night, I felt a very personal love, a love for me. All because someone took 30 minutes away from their home to come bless my son. Someone took time away from their personal lives, their dinner, their family, and decided to help Heavenly Father and Jesus Christ show me how much I was loved, how much I was watched over, and how my family was watched over.

So, when you are sitting at 11pm at night with your family and you have the feeling to visit  sister in your ward, make a little extra dinner for a family member, or send a message to let someone know they are being thought of, know that the spirit is directing you and working through you. Jesus Christ loves each and every one of us more than we can comprehend. If we want to become like him, we must also live a life similar to the one he did, which was full of selfless service and sacrifice for others.

If you come upon a person who is drowning, would you ask if they need help—or would it be better to just jump in and save them from the deepening waters? The offer, while well meaning and often given, “Let me know if I can help” is really no help at all.

Elder Rasband


My New Normal

When William was first born I remember visiting him in the NICU one morning. Ben pushed me into his room and I saw what I thought was a nurse but later learned was a phlebotomist poking Will’s heel to get some blood work done. William let out a cry of pain and I began to cry myself because I couldn’t imagine him in any pain at all. It was only about a couple weeks later when I found myself holding Will down to keep his brain from falling out of his head, the day of his emergency surgery. I have found myself many times thinking I wouldn’t be able to carry on, or handle the care of Will and I have surprised myself. 

Ben and I put feeding tubes through William’s nose and down his throat. It’s uncomfortable for him, he gags and sometimes will throw up. He cries wiggles to get away. I hold him down and pat his back while Ben tries to slip the feeding tube as fast as he can down his throat. Only 2 months before this I needed to leave the room while nurses would put his feeding tube down. As I see posts of my friends about how they couldn’t handle their babies vaccinations, I thought of all the things William has had to go through, and how Ben and I have to witness and even help for William’s own benefit. Vaccinations were a piece of cake. 

I will admit I became very sad at the fact that Ben and I had to witness William in so much pain, I guess what I am trying to say is that I wish I was upset my Will’s vaccines because that would mean he wouldn’t have to go through so much. As I thought about this and began to feel disappointed and sorry for our situation the thought of Mary, the mother of Jesus came to my mind. When we were told Will would die, my mom told me about Mary, how Mary carried Jesus and gave birth to him all while knowing that he would eventually have to Atone and die. 

25 ¶Now there stood by the cross of Jesus his mother, and his mother’s sister, Mary the wife of Cleophas, and Mary Magdalene. 

26 When Jesus therefore saw his mother, and the disciple standing by, whom he loved, he saith unto his mother, Woman, behold thy son! 

27 Then saith he to the disciple, Behold thy mother! And from that hour that disciple took her unto his own home.

Mary must have had many attributes that made her strong and able to carry, raise, and watch her son die. When the Angel Gabriel appeared to her and told her what would happen that Christ was the Son of God, that he would Atone for the sins of the world, I think she knew exactly what was going to happen to Him. I think she knew that there was going to be a lot of pain, suffering, and danger if she were to be the mother of Jesus, and with that some great faith. Faith that the suffering will only be for a little while, faith that because of his suffering it will be for the good of others. Faith that this isn’t the end, but all will be made right. 

Before Will’s first surgery Ben and I were making a lot of very complicated, important, and big medical decisions in a short period of time with a lot of pressure on us from many doctors, friends, and family members. I was with my mom outside the NICU when I finally broke. I began to cry because I was so overwhelmed with the pressure put on me. My mom explained to me; “this is your new normal. This is how life is going to be. You are Will’s advocate.” She explained this from her own experience with my brother when he was diagnosed with Autism. It was true, this was our normal. But we don’t have faith in outcomes, we have faith in Jesus Christ. Just as Mary had faith even as she watched her son suffer I believe I can have faith as well. Everything will be alright in the end.

I still get upset that Will has to go through so much pain and that his life is a lot harder than many his age, I don’t understand why my neighbor or friend can have a completely healthy baby with no problems or health conditions but my baby had it. But I know Mary thought the same, why did her Son have to suffer and Atone for the very people that nailed Him to the cross? Why does William have to be fed through a tube when he wants so badly to eat by a bottle? Why do people get pregnant without trying but some people try their entire lives and never have children? I don’t know. Life is not fair, we can go to the temple, go to church, serve in our callings, keep our covenants and bad things will still happen to us, and good things will happen to other people that probably don’t deserve it. That’s a fact. But even though William’s deformity isn’t fair to him, and even though he has to go through more pain than other children do in their entire lives, even though Ben and I have gone sleepless nights, harder times than probably most of our friends and family, even with all of the misfortune, pain and suffering we can say with full confidence that because of the Atonement of Jesus Christ all will be made right. Probably not in this life, but in the next. I know without a doubt in my mind that Christ and his many helpers on both sides of the veil have assisted us when we were in need. 

After a long week and a half of crying, being pressured to make certain decisions, and having our entire world change after Will was born, it was the day of William’s surgery. We had signed consent, we have said our prayers, and there was nothing left to do but trust. As we walked with Will down to the surgery room, peace overcame both Ben and I and when we kissed Will goodbye as they took him into the surgery room I knew it was going to be okay. This was our new normal, we won’t experience what others do with a new born baby. But that doesn’t make it bad. And there is help along the way. 

“That first Easter sequence of Atonement and Resurrection constitutes the most consequential moment, the most generous gift, the most excruciating pain, and the most majestic manifestation of pure love ever to be demonstrated in the history of this world. Jesus Christ, the Only Begotten Son of God, suffered, died, and rose from death in order that He could, like lightning in a summer storm, grasp us as we fall, hold us with His might, and through our obedience to His commandments, lift us to eternal life.” -Jeffery R Holland. 

Endure it Well! 

When I was pregnant with William and we found out about his deformity, Ben and I had many decisions to make. One big decision we had to make was if Will should be delivered via c-section or a vaginal delivery. Every one of our doctors advised us to have a vaginal birth. The reason for this was because since Will’s chance for survival was extremely low me having a c-section would cause too much risk on me when Will would die anyway. We didn’t have a single doctor advise us to have a c-section even though we felt that was what we should do. Ben and I had decided to take a week to pray and converse with the Lord on what we should do. We took time to go to the temple and Ben and I both had the impression to have a c-section. We all know how William’s birth turned out. In the ultrasound doctors diagnosed him with encephalocele which wasn’t what he had, and he was rediagnosed after birth. We were even told that if we were to have a vaginal delivery William would have most likely died. 

This lesson has taught me many things, one thing it has taught me is that when we go through trials we are not alone. We are provided with help from our Father in Heaven, Jesus Christ, and from others on both sides of the veil. It has taken me a long time to realize that God won’t take my trials away, but instead he will help me to face them. In Jeffery R. Holland’s book; For Times of Trouble he says:

“Some paths we feel we just can’t walk. Some mountains seem just too high to climb. Some steps are just too difficult to take. When that is so, heaven does intervene, but often it is not to smooth out the path or remove the mountain or shorten the steps. More often than not, God sends help in a different way. He makes us stronger and more sure-footed. In effect, he gives us bigger feet, stronger legs, a firmer back, more stiffened shoulders. He deals with us rather than with the problem we face.” -Jeffery R. Holland 

I love how he says; “He deals with us rather than with the problem we face.” I was a little bitter about this idea at first. At the beginning of this trial with Will I would have done anything to take his deformity away. To have him be a “normal” baby like many of my friends. But when I look at how far I’ve come, how far Ben has come, how far our relationship has grown, and how beautiful our family is; I can’t help but be grateful for the trial I have been given. When I look at my overall goal in this life, which is to return back to my Heavenly Father and live with him, I know that everything I have gone through in my life has helped me to reach that goal. 

“The Lord works from the inside out. The world works from the outside in. The world would take people out of the slums. Christ would take the slums out of people, and then they would take themselves out of the slums. The world would mold men by changing their environment. Christ changes men, who then change their environment. The world would shape human behavior, but Christ can change human nature.” -Ezra Taft Benson

Trails and adversity as hard and painful it might be,  we can’t help but see how it has shaped us, and made us better people. Going through this trial with Will has made me more knowledgeable about the human body and special needs children, it has made me more sympathetic and empathetic for others, I have become more patient and loving towards my husband and son. I have increased my faith in Jesus Christ and have discovered my own strength. Those things I have learned and developed make me grateful for where I am and excited for where I am going. When we allow God to work on us rather than our problems, we become the best of ourselves. 

Don’t get me wrong, adversity is hard and we all have those days when we wish everything is okay. Where we break down and have bad days. That’s normal and okay, everyone does it. Don’t forget the eternal truth of Christ’s atonement where one day all will be made right and all this will be for our good. That of we endure it well we can be reunited with our families, and with our Eternal Father in Heaven. 

“Our purpose in this life is to grow in godly ways, to be enlarged in such virtues as faith, hope, and charity, patience, perseverance, and strength. If that growth must come through sorrow or distress or grief, then so be it. It will be alright in the end … We are pursuing a divine plan that will one day lift us above all distress, but it will take many prayers-and many answers to them-before we are victorious.” -Jeffery R. Holland.

My Child Isn’t Normal, and That’s Wonderful.

I wanted to write a blog post for the many different parents who have a child, or had a child, with sever health problems. Parents who lost their child to health problems, or a parent who is currently taking care of a child who requires a lot of care.

When William was born, my experience was anything but normal. I was away from my baby the whole time I recovered at the hospital. Instead of staying in my room and resting I pushed myself to visit the NICU and see how my baby was doing. I didn’t bring William home until two and a half months after he was born.  I don’t ask for parenting advice on Facebook because William is so out of the norm. Spending many days and many late nights at Primary Children’s Hospital has taught me how many people are dealing with many of the same problems as I am. It has taught me that whatever situation you are given, you can still choose to be happy and embrace positivity.

I read a friend’s blog post one day and it really made an impact on me. This couple has struggled with infertility for a long time now, and she expresses her feelings often about how she doesn’t understand why someone else can be blessed with children and she can’t. I know for a fact that we all do this. I have met many parents at Primary’s and almost all of them have mentioned to some degree of how they look at other’s are are sad that they aren’t able to do things with their child like normal people are able to. It is a completely normal thing to think this, and it is very common. I constantly write about this because I have trouble with it, I wish William could lay on his back, didn’t have to go to so many doctors appointments, didn’t have so many diagnoses or bad news. Maybe you look at your situation and think; “I wish my child could eat without a tube.” or; “I wish my child hit the normal developmental milestones like other children,” “I wish my child didn’t have to be pushed in a wheel chair.” “I wish my child could see or hear me.” “I wish my child was with me right now,” “I wish i had more than just a couple hours or days with them.”

These feelings are normal and we should embrace them. We should say to ourselves; “This is hard! This sucks! I wish things were different!” You look at others and don’t understand why you were the person who lost a child, or had a child with some rare disability. William is fed every 3 hours, and at night I wake up, walk downstairs heat up some milk, mix some formula in it, and then hook him up to the pump. Sometimes he cries a lot because he is so hungry, and I always think to myself how I wish I was able to breast feed so it didn’t take so long to get William’s milk ready. I wish i could just stop his crying immediately. But I can’t. I don’t have certain experiences with Will that I wish I did.

We look at our lives and wish things could be different. Maybe it is a child that has passed away, maybe it is a child that has been in the hospital for months. Maybe you aren’t able to have children at all. Maybe your the love of your life decided to walk out on you. Maybe you have yet to find the love of your life. Whatever your trail or burden may be people are always looking to others and wishing for something different.

So, for the parents who wish better for their children I want to express the love that an almighty Father in Heaven has for you and your child. As William spent many weeks in the PCH NICU I never went a day without feeling the love and presence of the Spirit at every single child’s bedside. When I think of that love, I know I’m not alone.

“I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child.” -James E. Faust


The Good Life: Some Updates On Us

I wanted to write to everyone about how our family has been doing since Will as been home! He ha now been home for a week and 2 days. He was discharged from the hospital on August 2nd. It has definitely been hard to adjust having Will home rather than having him at the hospital, I am way more sleep deprived that’s for sure! William is totally worth it though.

I never explain what the doctors are doing to fix William’s head because one; its super complicated and hard to explain. Two; plans are always changing because William’s body is changing so it can always change. and Three; I personally think that is too personal about William’s medical history that is not necessary for others to know. I won’t apologize for not sharing those personal details because quite frankly it’s no one else’s business #sorrynotsorry. William still has updates otherwise for those who would still like to know!

Before we were discharged William’s speech therapist at Primary’s wanted to do a swallow study to see why William can’t take all his food by mouth. A swallow study is when they do an x-ray on William’s throat and watch as he eats to see how he swallowing. After the swallow study was done William was diagnosed with Dysphashia which means he cannot coordinated his swallowing good enough for a fast flow of food. If eats like a normal baby food collects in the back of his throat and gets stuck, this can cause blockage in the airway, chocking, and most dangerous aspiration. For now, he has a occupational therapist that come to our home (we absolutely LOVE her!) who helps Ben and I know how to bottle feed William. He feeds almost all of his food through his tube, and when he is showing signs or oral readiness we will offer a bottle with only 15 mls of milk in. He have to be very careful and pace him or else it can be life threatening for him. He needs to have his milk thickened so help him pace, and use a preemie nipple. The goal is to help him have the experience and pleasure, not about food volume. That said, breast feeding is out of the question. I still pump throughout the day, and he is fed my breast milk through the tube, I don’t know what the future will bring for William being able to feed by mouth of if  will ever be able to breast feed. But Ben and I both want what is best and safest for William, so we will not force him to feed by mouth unless he wants to. If I were to force him to take more food by mouth that would not only be extremely dangerous but cause a negative eating experience for him, I would hate myself if I caused him to develop a food diversion, which is possible, and real for many children.
Also before discharge William had a hearing test which he failed. The audiologist explained to me that because of William’s head dressing and his head deformity it was hard to do the hearing test in the first place. But they did the best they could and found that he has significant hearing loss. Because they were limited in the hearing test they want to see him again in 6 weeks to do another hearing test and have better answers for us. It was not surprising to me to hear he might have significant hearing loss because he did form abnormally, I guess Ben and I might be learning sign language which will be fun! At birth, the doctors also told us he had a visual impairment, because he was so young they aren’t sure how significant it is, but they will have an eye test for him in September so we will see how that goes!

The day of discharge was very hectic, we probably didn’t leave the hospital until around 5pm! I remember driving away with William in the car and Ben saying; “I feel like we are stealing him from the hospital!” It was so true, I felt even hesitant to take him home because I was so used to him being at the hospital and not home with us. It was crazy! The first night was very hard though, Ben had to work all night so thankfully I had my sister here with us to help me. William gets fed every three hours over the pump, and since he can’t be on his back still I was waking up probably every couple minutes just checking on him to make sure he didn’t roll over on his back (which, all the people at the hospital can back be up when I say he moves A LOT so this is very possible!). William slept wonderfully the first night, but me on the other hand, not so much!


Because William can’t be on his back still, he has a special bed car seat that he uses. Here is a picture of him in the car bed, he doesn’t like it very much and he is getting so big that he is going to need something else pretty soon!

On Thursday August 4th William was visited by his OT and PT. His feeding is doing very well, and we are continuing to pace him and only feed him for experience and pleasure.His PT was concerned about his hips, knees, and neck. Since he can’t be on his back certain muscles are not being used which causes some muscles to be underdeveloped. His PT taught us some exercises to do with William to help his muscles and She came today again and said he has progressed a lot! We just got to keep working on his exercises!

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Here is a picture of Ben working with William the other day on his hips.

On Friday August 5th William had his first doctors check-up since the hospital. He is seeing a pediatrician at University of Utah Hospital and she is wonderful! We love her, we were so worried about William having a pediatrician that would understand him and have experience with how complex he is, and she was wonderful. His check-up went fantastic! He now weighs over 12 lbs, and he got his ears cleaned! It was a wonderful check up, and he is doing very well! Yesterday, August 10th William met with his plastic surgeon to check his head, and it is healing just as it should! Soon he will be able to have his second surgery on his head. At this point we are moving forward with faith in the Lord that He will continue to guide the surgeons and He will allow William’s head to heal in the best way for William. We feel confident in the abilities of his plastic surgeon, he is very knowledgeable, talented, and really cares for William. We couldn’t have asked for better doctors, surgeons, and therapists.

Ben and I moved to Bountiful, and we love our ward! We haven’t been to church yet, and we have already met almost half the ward! It has been awesome, we have felt so welcomed and so loved! We love where we are living, it is a wonderful area for sure! We are excited for this new chapter in our lives.

Right now, William is moving more and more every day! He is smiling and interacting with people. He is doing so well at home with us it was a wonderful decision to bring him home.Having Will as our baby is the most stressful, tiring, and wonderful adventure. He will always have health difficulties, and we are going to continue on this crazy roller coaster ride. As William develops we will continue to have good news, and bad news. We will have set-backs, and great victories. But we have chosen to continue to give William the best chance in this world, he deserves support and love as he develops. We have no idea what the future will bring for William, but we know that no matter what happens we will always be his parents, he will always be our son. We will always love him, take care of him, and have fun! One day, William will be resurrected and made perfect through the atonement of Jesus Christ. He will one day stand before Ben and I with a perfect head, brain, and mind. He will be able to see and hear perfectly, and his body will be made perfect and complete. I know that without a doubt in my mind. But until that day, we will enjoy every moment, embrace every set-back, and depend more fully on the Lord.

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“Come What May, and Love It!”

William has a lot of health problems, and a lot of different diagnoses. He is a complex kid. He has visual impairments, hearing impairments, he has a problem with swallowing and must eat through a feeding tube, he has many different doctors, surgeons, and therapists. Bottom line, he is different, he is a curveball. Now, being at Primary Children’s hospital has taught me to enjoy the challenges and the life I am given because I can’t change what has happened. But, this is something that wasn’t easy, and something I still struggle with.

I had a hard time not comparing myself, and I still have a hard time with it. I get jealous, self-centered, and mad at the fact that my situation sucks and someone else has his better than me. For example, I hate going to the doctor and being told more things that are wrong with William. I hate being told more and more limitations that he has. I am jealous of the friends that have healthy babies that go to the doctor and are told that there babies are healthy and strong. I once had a NICU mom explain to me how she hated being other moms out with their babies and she was unable to take her baby out because he was to fragile. It’s a normal thing to be jealous and compare your life to others, but the more people I meet the more I realize that everyone does it, and you may be jealous of one person but that same person is looking at you the same way

I know many people with many different struggles in their lives. Since I have posted and been open about my own struggles, many people have reached out to me. Health problems, unable to conceive children, divorce, death of a child, loneliness, depression, fear, and much much more. But it’s that moment when we look at our situation and we finally say; “I’m okay with what I got.” 

We can look at a situation and think about how someone has it better and be bitter or we can decide to make the most of what we got. I can either sit and cry about the fact that my baby has health problems and disabilites or I can pick him up and rea him a book and enjoy the time I have. Let’s stop comparing ourselves, stop talking about how Soninke else has it better or maybe how you’re the one who has it better. Let’s start helping each other. Serving one another, and remembering that one day everything is going to work out in perfect harmony. 

Lets Talk About Disabilities

I have been wanting to write about this topic for awhile. It’s been on my mind a lot as I have been blessed with a son who has been born with severe disabilities. I want to first point out that I write this not just as a mother, but also as a sister. I grew up with a younger brother who has autism and ADHD, and trust me it has made all the difference.

As we all know what we consider to be “normal” differs from culture to culture, family to family and person to person. What we consider normal is what the majority of the population experiences. For example; as a child develops majority of children in the world develop certain skills that are needed for survival. As we study different children we see that some will not develop in the norm or what we consider the norm. They are not like the majority of the population. As human beings, we are given the natural man and in that natural man we develop routines where we are used to a certain way things run, and when something happens outside of that routine we freak out. It’s okay to not understand things, and to be used to a certain way things are supposed to go. But it is also important to learn to adapt and educate ourselves.

When I was in young womens at church we did a service project where we went to a home for adults with disabilities. We all had a sacrament meeting with them, and sang primary songs. I remember standing in the middle of all these people, the “normal” people and the ones that were different. I remember thinking to myself how wonderful this moment was, how wonderful it was that we could all be around each other. How no one was making fun of these people, but instead it was a room full of love and acceptance. I also participated in special olympics, and have done many service projects with special needs children and adults. At every single one of these experiences a stake president, bishop, or service project leader would express their testimony of how special these people are. After these many different experiences I have come to understand how pure and perfect children and adults are who have special needs.

I feel that in the world today, because we meet someone who doesn’t fit what we consider to be the “norm” we close ourselves off to those people, we see them being bullied, avoided, looked down on. I have seen people look down on those with disabilities and think something is wrong with them, and that they are better. I have seen children express rude comments all because they are un educated in the importance of acceptance, kindness, and love. The sweetest spirits that I have ever met were given some sort of disability, abnormality, or may look different in some way. I know for myself that everyone I have come in contact with that has special needs I realize how they are better than me. At Primary Children’s hospital I was at a parent lunch when a woman walked in with her son in a wagon. He was unable to move, and control his movements. His mother explained; “He is what we all are trying to be. Pure.”

I look at William sometimes and wish his head had developed normally, that he didn’t have any other disabilities and he was like a normal baby. But as the days and months go on I realize how selfish that is of me. Children and Adults with special needs are already there, they have already achieved what the rest of us “normal” people strive a lifetime to achieve; being pure, becoming Christ-like, and becoming perfect.

“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.” Russell M. Nelson