My son Dylan had his first seizure when he was 4 years old. Admittedly, I panicked. Our oldest son ran from the room, frightened, while I cried and tried to talk to Dylan as he was seizing. I think I remember saying “what do I do?”, over and over, while my dear husband remained calm. Looking back now to this life changing event nearly 11 years ago and knowing what I know now, it was a small seizure that only lasted maybe a minute. But when it’s happening to your sweet baby boy, as all parents know, it might as well have been forever. After a few doctor appointments and many tests, we came to discover that he had something called Tuberous Sclerosis Complex, a rare disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
Shock and disbelief. And heartache. Oh, the heartache!
I clearly remember sitting in the doctor’s office, staring at the neurologist after hearing the diagnosis. What was this disease I had never heard of? I felt like I should cry, but the tears didn’t come. I was in more than a little denial. I remember thinking, I can’t do this! This is one trial that I just cannot bear. I’m not patient enough, I’m not strong enough, and I’m not the mother he needs. In the months that followed I could barely let him out of my sight without a feeling of panic. I got up several times in the night to check on him, afraid that he would have a seizure while sleeping. I remember once standing at the kitchen sink in the middle of the day and finally just sobbing, praying, pleading with the Lord for help and strength, to help me know what to do, how to help my son. This was the beginning of my journey to learning to ask for and accept the gift of grace from Heavenly Father through His son, Jesus Christ.
More than 40 years ago, President Ezra Taft Benson said, “Nothing is going to startle us more than when we pass through the veil to the other side than to realize how well we know our Father and how familiar his face is to us.” This quote has given me great comfort over the years and I have read it many times. Can you imagine the joy of recognizing the Savior’s face and feeling His embrace? We are promised “Draw near unto me and I will draw near unto you” (D&C 88:63).
When we are weak, we draw near unto him and when we do, He will show His grace and mercy to us. When we come to Him it is as though we are throwing our hands up and saying “I give! I am yours. Here I am, here is my heart, take it all and let everything else fall away.”
Learning to accept that I couldn’t control Dylan’s situation or “fix” it has been one of the hardest parts of learning to deal with his seizures and the effects of TSC. If you have ever experienced your child having a seizure, you know that it is just about the most helpless feeling you can imagine. There is almost nothing that you can do. Ask anyone who knows me – I like to be in charge! Over the years there has been a change in me as I have accepted that there are many things about Dylan’s challenges that I cannot control and that I just have to do all I can do and put it in the Lord’s hands. I spend a lot of time on my knees praying for Dylan and my other two children. The grace of God helps me every single day! It strengthens me to do the things I couldn’t do on my own. I have learned, and continue to re-learn throughout my life, that the Lord knows me. He knows my name. He knows my struggles and weaknesses. When we recognize His hand in every small detail of our lives, it is just like hearing Him call to us personally. The Lord said to Emma Smith, “Thou art an elect lady, whom I have called” (D&C 25:3). I believe he has the same message for you, for me and for all his sons and daughters.
Dylan, Age 6
We need the Atonement in our lives! Elder Quentin L. Cook said, “It seems to be part of your special nature to feel that, no matter how hard you work and what you do, it is never enough. Sometimes, despite the fact that everyone else feels you have been spectacular, you may feel inadequate and ineffective. Yet the excellent work you do, the kindness you show, and the love you exhibit are blessings beyond measure to those who have the privilege of associating with you. And it is enough!”
I love the quote above because I often have feelings of inadequacy, like I am not doing enough or not working hard enough or being awesome enough. That is what women tend to do. We are so hard on ourselves. You know what? Sometimes we are going to come up short, even when we have the very best intentions and try our hardest. Thank goodness that the Savior’s “grace is sufficient for all men that humble themselves before [Him]” (Ether 12:27). It comforts me to know that my shortcomings won’t completely ruin my children; they will receive understanding, love, and grace from our Savior. He wants me and my family to succeed!
Being a mom is so hard! When my children are happy, I feel happy, but when they are struggling or suffering, I would do just about anything, sacrifice anything to help them. That day years ago standing over the sink, praying and finally weeping, I felt peace rush over me and I knew for sure that my Savior would help me love and care for Dylan and all my children with every part of me, and no matter what came our way or how hard it would be, we would get through it. I trusted that God gave Dylan (and our family) this trial for a purpose. With His grace and strength and love, it was certainly something I could bear.
Dylan is now 15 years old. Life for him can be pretty hard. Even with medication and a surgical implant he still has seizures just about every week. Even as I am typing this, he is asleep in his room upstairs instead of being at school after having 3 seizures in a row in the early morning hours. Life is hard, yes, but we find plenty of joy in our family and the Atonement of Jesus Christ and His mercy and grace! I am simply trying to live the gospel the very best I can. Looking for and recognizing the Savior’s hand in my life has helped my love for Him increase. I still have weak moments all the time, but I know that if I stand with Christ and pray for His grace each day, He will show me the way through. And that is good enough.
Nicole grew up in beautiful southern Utah and now is raising her family in Clovis, California. She is a photographer, singer, missionary mom, wife to her college sweetheart Matt, and mother to three really cool kids. She’s a firm believer in belting out at least one Broadway show tune per day and embarrasses her kids pretty much every day by singing along top-volume to all the “cool” songs on the radio. You can connect with Nicole on Instagram @clicklikemad