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.