“To the Individual Who is Fearful in the Heart”

I never pictured myself at 21 years old married, with a son, and making complex huge medical decisions. This entire week Ben and I have discussed with doctors over and over again on different outcomes with William surgery wise, and for his life. During these past few days I have felt myself completely dependent on the Lord, sometimes even a little annoying because I pray so much. Ben and I met with all of William’s doctors all together in one room, bad news after bad news, hard decision after hard decision. We prayed about six times on the drive back from the hospital. I have never cried more in my entire life. This is hard, this is huge, and I feel so little.

One big thing that I feel is fear. I fear about William’s surgeries, fear about his life, fear about if he were to pass away at any moment. I fear constantly, that I don’t make the right decision, that something will happen to him and he will be taken away from us. The feeling of fear is not a feeling I want to have, it takes away from my faith and hope.

True faith, it faith in the Lord Jesus Christ. It is not having faith that everything will happen the way you want it to. When I was in my YSA ward my first semester of college a girl shared her testimony on faith. She shared a story that when she was serving her mission in England her and her companion were teaching an older gentlemen who was diagnosed with cancer and given a short time to live. They asked him if he wanted to be baptized even though he would most likely pass away. He replied; “of course I want to be baptized! Sisters, I have faith that God will heal me from my sickness, but if he doesn’t, I know he will welcome me home with open arms.” He passed away shortly after he was baptized. This story stuck with me, because in life we go through things we never expect to happen and a lot of the time they are really hard things that you hate to go through. We aren’t freed from our adversities. But, we are given the greatest gift from out Heavenly Father to trust in him, and to depend on Jesus Christ.

As Ben and I continue on this path with William, we continue to keep this mindset of the “But If Not” that I wrote about before. William is Heavenly Father’s child before ours, and I know that no matter what happens God loves me, Ben, and William. He is still aware of us, he is still a loving Heavenly Father. Our lives are all different, we all go through different trials and the odds may be against us, but we must always ave faith.

This Mormon Message was really helpful for me as we come to conclusions and decisions for William and his surgeries and care.

“And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.” Doctrine and Covenants 84:88

 

It’s the Little Things

Today was supposed to be a very sad day. Today was the day we planned William’s funeral. Today we were supposed to mourn the death of our child. But instead we spent four glorious hours with him, holding him, playing with him, reading to him, and loving him. We are so blessed to have him, but sometimes I find my self getting discouraged about the future ahead. We don’t know how long William will be in the NICU and the unsureity of not knowing makes me nervous and anxious. Ben and I are going to stay in Utah until William is able to come out but I fear that we will be here for months waiting for him to be able to come home.

I am recovering from my c-section away from my own bed, my own shower, everything. Pregnancy hormones get the best of me but I find myself getting discouraged, sad, and frustrated at the fact of this.

I think I mentally prepared myself and emotionally prepared myself to get ready to let go of my baby. The fact that I don’t have to and the fact that he is okay makes me so incredibly happy beyond words that the fact that we can’t go home soon or the pain of my surgery. I think sometimes when we get stuck in situations that aren’t ideal we need to remember the wonderful positive and happy things that happen to us. And when you have a baby in the NICU the little things save your life. They keep you sane and they keep you happy.

So, today was a little hard emotionally because of the fact that I wish I could take my baby home. But today, we were able to hold William again I was able to play with him. Ben changes his diaper and changed his dressing on his head. I felt like we were parents in that moment and I was really happy. I think for myself I am going to notice those little things that make me so happy. Like Williams little squeaky noise that he makes, his big eyes, his cute little personality. When I get to hold him.

William’s Birth Story

Ben and I drove down to Salt Lake the Sunday before William was born. During this time I had many feelings of anticipation, anxiousness, sadness, and fear. I cried when we got to the hospital explaining to Ben how it shouldn’t be this way. Why couldn’t my sweet William be a normal baby? At this point I was ready to let him go. I was ready for Heavenly Father to take him home and for Ben and I to return to Rexburg in empty arms.

The night before Will was born both Ben and I had an overwhelming feeling of peace about our sweet boy. We expressed to each other how we felt excited and happy for his birth. It was a feeling of relief, a feeling that definitely came from the spirit. At this point I was ready for him to pass away, because I knew he would be okay and he would be with my grandma and grandpa and most importantly his Heavenly Father.

I had a planned c-section, being prepped for surgery was hard, I had many different injections, IV’, and the worst part was the epidural. I remember feeling overwhelmed and scared, only for myself. I was nervous for surgery, but not for Will. The placed me on the operating table, and put a big sheet up. I stared right at the sheet, not able to move anything from the chest down. The nurse said; “who do you want back here with you?” I replied; “Ben, my husband.” and waited anxiously for his arrival and a hand to hold as the surgery took place. When I saw him I began to cry, I expressed to him how scared I was. He was a huge support to me explaining to me how proud he was of me, and how much he loved me. During the surgery Ben stayed with me only peaking over the curtain every so often to explain to me what was happening. It was quick when they got to the baby, Ben said to me; “they are cutting the uterus.” and seconds later I heard a sweet cry. That sweet cry declaring new life was the most spiritual experience of my life. I cried as I heard him, Ben looked at me and said; “he is beautiful.” My doctor came around the sheet and held him for me to see, she then turned him around so I could see the back of his head. “That’s a good sign! That he’s crying!” The doctor explained. William was then passed through a small window entering the NICU where Ben and I waited for the nurses to call Ben back to see Will.

Before William’s birth this was the time we expected him to be hooked up to life support. From many different doctors we expected him to not be able to breathe at all on his own and would need a breathing tube. Ben would give him a blessing, He would continue on life support until I was able to see him and we were able to give him his baby blessing, then he would pass away.

I thought about this plan as I waited for the NICU nurses to call Ben back. I looked up at Ben and said; “They are taking awhile to call you back. That’s not a good sign.” At that moment the OR door opened and I heard a women’s voice say; “We are ready for dad.” Ben then looked at me and said “Okay, I love you.” and I replied saying I love you too. The Nurse then came into my view and explained to me; “Mom, baby is doing just fine he is breathing on his own.” That’s when I lost it. I was crying like ugly cry. The feeling of relief that came over me in that moment was one of the best feelings I ever felt. In that moment I felt a complete calmness that just overcame me, peace and happiness.

Since then Will has done extremely well despite the odds he has been given. Because of this I was humbled to understand that Heavenly Father is William’s Father before Ben and I are his parents. And Doctors, and people, and even my own thoughts and my own words lost hope in his survival. I don’t know what the rest of his life will be like. Because of the development of his brain he will be a special needs child, and he is at a high risk for seizures. At this point I feel that our journey with William is not over, and Ben and I have a lot more ahead of us that is going to make us better people, more understanding people, and more dependent on the Lord, Jesus Christ than anyone else. I have learned so much so far and I feel that I have a lot more to learn. I am extremely humbled to be his mother, and to have the privilege of taking care of this sweet spirit.

Take life one day at a time. Today, I am going to enjoy the fact that my sweet baby is alive and with me. This moment, I am going to rest from my surgery and spend time with my husband. This second I am going to thank God and Jesus Christ for their everlasting love. and Forever I am going to be grateful for the fact that Families are Forever, that I get to have William and Ben with me for all eternity. That William’s deformities will not last, that he is beautiful to me, and that the love that God has for his children.

The Atonement of Jesus Christ is real. It is eternal. No matter your situation, no matter the odds that are put against you, or the sadness and mourning you feel. Christ’s Atonement is there for everyone. Even those who doubt it. I know Christ was with Ben and I every step on the way with William and he continues to be with us every step of the way. I love my Savior, and I am forever in debt to him for his loving Atonement that allows me to be with my family forever.

Here are some pictures of William from his birth to just tonight! He is an active little guy that just loves to move around. He loves his binky and sucking on his hand, he has a tight grip and a sweet little face. His personality hasn’t changed since I was pregnant with him, he continues to move around and now he is so vocal! More updates to come. Ben and I will probably be staying in Salt Lake for awhile so the surgeons can come up with a temporary fix to protect his skull. We are praying that we will be able to hold him soon and be able to take him home.

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This picture above was when the were on their way to transport Will over from the U of U hospital to Primary Children’s. They brought him over to my room so I could see him, this was the second time seeing him, the first time was when he was first born and only for a second before he was taken to the NICU. This is my expression when they came through the door into my room. The picture below is them entering the room with him. He is not hooked up to anything, just strapped down in order to keep him from moving around and hurting his head.

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One Day at a Time

I took a Family Stress and Coping class a couple semesters ago. It is a required class for my major, in this class we discuss coping strategies for families who go through hard times, or events in their lives. Something we learned in that class that was very valuable to me was the importance of taking it one day at a time.

In Genesis it says; “And God said, Let there be light: and there was light. And God saw the light, that it was good: and God divided the light from the darkness. And God called the light Day, and the darkness he called Night. And the evening and the morning were the first day.” When God created the earth he created day and night, where each day ends with night, but then starts again. This to me is a powerful truth that every day must end, and sleep must come where we take a break and worry about the next day when it comes.

Ever since Will was diagnosed with encephalocele I will sometimes get caught up in the future. I picture how Will’s death will happen, how his funeral will happen, how i will react, how he will look. Some nights I don’t fall asleep for hours. When my mind gets caught up in these made up scenarios of William’s death I feel hopeless, depressed, and exhausted. During these times I have had to work hard to only take as much as I can handle, take breaks, and embrace the moment rather than the future. My best friend Claire said to me when we first found out about Will; “You can’t mourn someone who isn’t gone.” When she told me this, that was when I decided that William was still here, still with us, and we needed to embrace the time we have with him. When I changed my mindset to focus more on the present, I found that the future wasn’t so scary. I found that I had time to plan.

The hardest thing Ben and I have had to do is plan for William’s funeral. I hope none of you ever have to discuss with your spouse which casket to pick out, where to bury your child, what to dress him in before he is buried. Looking at funeral homes, picking out possible locations of where you want to bury your child is exhausting and depressing. What has been getting us through it is the support of friends, family, and the Lord. When Ben and I can’t handle plans of Will’s birth and possible death, we take a break and give it to the Lord.

Although we sometimes feel we can do it all, we are all mortal, we need help, and we need rest. Along with taking a break, we find strength in the Lord each day. In D. Todd Christofferson’s BYU devotional talk; “Give Us This Day Our Daily Bread” he says;

“Included in the Lord’s Prayer is the petition “Give us this day our daily bread” (Matthew 6:11) or “Give us day by day our daily bread” (Luke 11:3). I believe that we would all readily acknowledge that we have needs each day that we want our Heavenly Father’s help in dealing with. For some, on some days, it is quite literally bread—that is, the food needed to sustain life that day. It could also be spiritual and physical strength to deal with one more day of chronic illness or a painfully slow rehabilitation. In other cases it may be less tangible needs, such as things related to one’s obligations or activities in that day—teaching a lesson or taking a test, for example. Jesus is teaching us, His disciples, that we should look to God each day for the bread—the help and sustenance—we require in that particular day. This is consistent with the counsel to pray always, and not faint; that ye must not perform any thing unto the Lord save in the first place ye shall pray unto the Father in the name of Christ, that he will consecrate thy performance unto thee, that thy performance may be for the welfare of thy soul. [2 Nephi 32:9]”

I have a testimony of the Atonement, that Christ not only repented of our sins but has felt exactly what we felt in order to help lift us and sustain us in time of need, when we can no longer carry ourselves. It is always okay to ask for help and to admit that we cannot do it ourselves. Prayer is much needed when asking for daily help. I pray constantly for the smallest things to the biggest things. I even find myself praying to God to allow me to sleep when my mind gets the better of me. So please, when you feel overwhelmed with the great tasks that God has asked you to do, or with the situations that have been given you by others, turn off your phone and go for a walk. Make some lemonade and sit on the porch with your dog. Make dinner with your husband, watch a funny movie. Pray for the daily bread that is needed for your tasks, but understand that not only did God create night and day, but he also rested. Rest, pray, read, and take time to take care of your body. You can do it, with help and strength from the Lord.