One of our favorite things about Mommy Mailbox is getting to know our subscribers. This month, we celebrate with Caitlin and are incredibly inspired by her story of perseverance and gratitude. Read more of her story below.
When Caitlin Naulu’s daughter, Auni, was only three months old, Caitlin received news most of us can hardly imagine. Auni, was diagnosed with Spinal Muscular Atrophy, which meant she would never crawl, walk or clamber up on her daddy’s knee and eventually would lose the ability to even smile. Yet despite steep odds, Auni reached her first birthday this past week and remains encircled by her loving family who treasure each moment.
Give us a little background about yourself. Where are you from, schooling, how did you meet your husband?
We both grew up in Spanish Fork, Utah and we still currently live here (I wouldn’t be surprised if that’s the case for the rest of our lives.) We love it here and both of our families live here. The only other thing I would ask for is a beach! I currently put my schooling on hold to care for Auni but I was in the special education program at Utah State University. They have a distance education program, making it possible to stay close to family and friends. I have grown up with a special needs younger sister, so my love of special education has stemmed from there. I plan to be a special education teacher and cannot wait for that dream to come true! Dallin has one more semester left until he receives a bachelor degree in plant science. He is planning to be a superintendent of a golf course (the person who takes care of the actual landscape of the course). As for Auni, she still hasn’t decided what career path she wants to take yet… How did I meet my husband? I was your average star-struck freshman in high school (with braces might I add, how attractive) drooling over the star basketball player two years older than me, the one and only, Dallin Naulu. After the drooling stopped, my best friend and I became really close with Dallin and his friends. From there, he dated my best friend and I dated one of his friends. I know, right? We remained good friends through the whole thing but things didn’t spice up until after he returned home from serving a 2-year LDS mission in India. Once he got home, he didn’t waste any time! He kissed me within 2 weeks (talk about dragging me out of the friend zone), proposed to me 4 months later, and we got married 3 months after that! We don’t mess around.
Tell us about your journey to motherhood…
With Dallin and I being so young when we got married, we planned to wait awhile until we started a family. With us both working and attending school full-time, it just made sense to wait. I mean, my 19-year-old uterus had at least another solid 20 years of being in working order. So, wait we did….until about a year later. I just couldn’t fight the baby hunger anymore, so we prayed about starting our family. With the help of Heavenly Father, we knew it was the right time to start popping out children (If only it was that easy to get them out). We tried for 9 months before I got pregnant with Auni. It was the most thrilling, scary, exciting, moment of our lives reading the positive test. My pregnancy was normal and everything went as expected. About half way through my pregnancy, I was told the baby would have to be delivered by C-section. I have some issues with my insides, which prevents me from delivering the baby vaginally without harming the baby or myself. Other than that, everything went smoothly. Although, I was technically a mother before Auni was delivered, there is no other moment that tops hearing her cry for the first time! Even though I was a temporarily paralyzed, beached whale on the operating table and couldn’t hold Auni girl, it was by far, the greatest moment of my life! And motherhood has been a glorious roller coaster ever since.
Your baby was recently diagnosed with SMA (Spinal Muscular Atrophy). Tell us a little about this.
Spinal Muscular Atrophy is a genetic disease, which negatively affects the muscles. The gene affected by the disease is called the survival motor neuron 1. In a healthy person, there are two copies of this gene present. In a person with SMA, there are zero copies present. When this happens, the nerves that connect the spine and muscles deteriorate; therefore, all the muscles deteriorate with them. This gene is a recessive gene so both parents have to be carriers. Dallin and I were both unaware that we were carriers until Auni was diagnosed, which is the classic SMA story. 1 in every 6,000 babies is born with SMA while 1 in 40 people unknowingly carry the gene responsible for SMA. There are different types of the disease depending on when symptoms start occurring. With Auni, we started noticing her lack of movement around three months of age. While she did learn to hold her head up, she was never able to sit up, crawl, walk, etc. Auni not reaching these milestones led to her diagnosis while she was an infant, which classifies her as a type 1. As for Auni’s future with this disease, it’s unfortunately pretty grim. Her muscles will continue to weaken. She will lose the ability to swallow and breathe on her own and will require a lot of medical assistance to keep her alive. She will also lose the ability to smile, which is one of the most heart breaking things of all. The statistics for this devastating disease are pretty harsh. SMA is the #1 genetic killer of children. 50% of children with SMA type 1 don’t make it to their first birthday. 90% of them don’t make it to their second birthday. While the statistics are heartbreaking, we don’t let them define the way we live our day-to-day lives. We appreciate every single day we get to spend with our Auni girl. We try our best to do normal things and to help Auni have as normal of a life as possible. While there are very difficult days/weeks (as with any family), we soak in all of the good times and enjoy every last second!
How has your daughter’s diagnosis impacted who you are as a mother?
I know Auni’s diagnosis has impacted me in more ways than one. I’m probably not even aware of half of them because Auni is my first child, so I have nothing else to compare it to. One major way I know it has impacted my life, is that it has helped me keep things in perspective. Her diagnosis has helped me see what is truly important in life and has reminded me to not stress over the small things. Anyone that knows me can tell you that I excessively stress over unnecessary things all the time! It’s a curse, really. After learning of Auni’s diagnosis, and continually learning to care for her medical needs, I have quickly come to find out that those are the type of things that are worthy of my stress/worrying. There is no time or energy to worry about small, unnecessary things. The best way my time can be spent is making sure I am doing everything in my power to take care of Auni’s needs, making sure she is happy, and making sure we are having fun along the way! Motherhood is an absolute blessing with all of the good and bad moments wrapped up in it. I had no idea such a life-altering trial was heading our way, but I am thankful for it every single day. I have learned more in these last few months than I ever thought was possible. I notice and more greatly appreciate the beauty that surrounds us in this world. I love nothing more than slowing down to enjoy the tender, irreplaceable moments spent with those I love most. Those small moments are at times what get me through a hard day. One pro to Auni’s diagnosis is that I can cuddle her anytime I want! She can’t get away from me even if she wants to, so I take full advantage! There have been situations out in public where Dallin or myself have viewed children interacting with their parents and we can’t help but notice that Auni won’t be able to do those things. There was the cutest little girl hugging and kissing her dad and you could tell he had just about had enough. It was completely understandable considering she had been doing this for over 20 minutes; but I couldn’t help but imagine Auni doing this to Dallin. The thought made me so happy. There are a lot of small things that I think a lot parents take for granted or even view as a nuisance that we only wish Auni could do. There are days that Dallin and I would give anything to have Auni hanging all over us, making messes around the house, getting into everything, and running around so much we can barely keep up with her!
What is one of the most important lessons you have learned as a mother?
Motherhood has taught me the importance of service and has shown me a love I never knew existed. After having a baby, you quickly learn that your own needs and wants come after your child’s. That’s how it should be. While they are young, they need our love, support, and guidance, to teach them how to survive in this crazy world of ours. As a mother, you give everything to your children and you put yourself last. Although we still need to take care of ourselves (if not, who is going to take care of our children?), the majority of our time and energy is given to our children. We do this because we love our children more than words can describe! I never knew I could love another human being so much (sorry, Dall)! Don’t get me wrong, I love Dallin more than I could ever express, but the love you have for your children is just a different kind of love. I think it comes from being responsible for them, and being their protector. I would do absolutely anything for Auni in order to make sure she feels safe, happy, and loved.
What advice would you give your 22-year-old self?
I would tell myself to keep pushing forward and let myself know that I’m doing a great job! More times than not, I am a stress case and worry about everything (here we are again), including thinking I’m coming up short. I’m sure a lot of us mothers can relate. We are constantly beating ourselves up and dreadfully comparing ourselves to the other moms out there that appear to “have it all together”. In most cases of comparison, we are comparing our weaknesses to other’s strengths. That just doesn’t make any sense. Why do we do this to ourselves? We are all doing the best we can and that is enough. I would also keep reminding myself to slow and down and enjoy all of the little moments. Many times, the never-ending to-do list takes over and time spent with our family is sacrificed. I need to constantly keep in mind that the basket full of dirty laundry, the unmade bed, and the dishes in the sink can wait. But Auni can’t. Whether I like it or not, she is going to keep growing up! I never want to look back and regret not clearing my schedule to spend more time with her. Putting school on hold for now was the best decision I could have made! There is no place I would rather be than home with my Auni girl!