Life As We Know It

Lately I have noticed that my "good days" are more frequent and my "bad days" come less and less. I attribute those good days to several things:

1. Our sweet baby girl. She is a glorious distraction from all the overwhelming aspects of SMA. She fills our days with things to do, so that my mind doesn't do to the dark place (the funeral planning-losing our son, heart wrenching place). Before she was born, I would be playing with Nicholas and have to leave the room because I would get so overwhelmed with emotion and start crying. Now I am able to maintain my composure in front of my son and focus on other things. Ella is one of those wonderful distractions. Nicholas loves to play with his sister and the bond they share between them helps to alleviate some of that constant worry about Nicholas's health for I know that each joyful moment Nicholas experiences is making him so happy. At this moment they are playing together on the floor and Nicholas is trying to get Ella's attention and laughing at her as she smiles and coos at him.




2. Faith. Recently I read a truly amazing book that I would recommend to anyone. It's called Heaven is For Real and is written by Todd Burpo about his son's near-death experience in which he visited Heaven. I was raised Catholic so my faith has always been a huge part of my life. Faith has taken an even larger role for me in the last eight years as my career and my faith have over-lapped. I taught first & second grades for five years in a local private, Catholic school, and now I work as a Pastoral Assistant in a local Catholic parish. I have always known about Heaven and that I hope to be there someday when my time on this Earth comes to an end. However, there have been doubts about whether or not this glorious place really, truly exists. After all, we don't often have loved ones coming back to tell us that they made it there. After reading about four-year-old Colton Burpo's experiences in Heaven, I can say with confidence that when the day comes for our sweet son to leave us, there is no other place I would want him to be. I also always think about the first chapter in my students' religion book. It was called Heaven Is Our Home and it prompted the children to close their eyes and imagine their best vacation, their most wonderful birthday party, a place filled with family & friends, where no one gets hurt and everyone feels constant love and happiness. These images are confirmed in Heaven is For Real which explains a utopia of holiness for all who enter. I no longer fear death for my son or anyone else I love for the place they will go to live all of eternity is better than anything they could ever experience here on Earth.




3. Nicholas's good health. Since December of last year when we switched Nicholas to the amino acid diet + breast milk + fresh fruits/veggies he has become a new kid. He is so full of life! He feels fantastic everyday and is so happy all the time. He no longer has digestive issues and the pain that accompanied them. After watching a couple of documentaries on food: Food Matters & Food, Inc. I can see how a healthy diet can contribute to one's overall health so I have made some changes in the way our whole family eats as well. As Nicholas nears his third birthday, he has become more verbal, more engaged in activities, more assertive about activities he would like to participate in. Before when he wasn't feeling good, he didn't want to do anything except lie on the sofa and watch movies, so we are thrilled that he is so eager to try new things now that his tummy issues are resolved. This new diet means that Nicholas has been feeling great pretty much everyday for over four months. It also means he has regained a minimal amount of strength in his arms, legs, and head control which is a huge accomplishment for a child with SMA.




4. Time. Sunday, April 17th marks the two-year point for Nicholas's diagnosis. On that day in 2009 when we received Nicholas's diagnosis, our hearts were completely broken. We feared that everyday might be our son's last. We were unsure about what to expect, what to do, how to live a life with a child experiencing a terminal illness. Time truly does heal. In the past two years, we have realized that SMA doesn't define our son. It is a part of who he is, and yes, it does limit him in terms of physical movement, but we have learned to make accommodations in everything we do to help meet his physical needs. It has also healed our constant fear that everyday with Nicholas might be our last. We realize now that Nicholas most likely will not die a sudden death which was our fear for a long time. We realize that as the end of his life nears, there will be signs (breathing problems, desaturations, lethargy, etc.) that will help to recognize that his time is on Earth is coming to an end. So we live each day with fervor, realizing that while Nicholas's time will most likely be much shorter than we hope, we try to treasure the time we do have together and try to keep faith that there might someday be a cure for SMA in Nicholas's lifetime. It also helps to read stories of inspiration people living with SMA who have beat the odds and are living adult lives with this disease.




5. A wealth of information. Because we live in a time of easily accessible technology, sites like Facebook, SMA Space, Families of SMA, and the Gwendolyn Strong Foundation (among others) help us to keep connected and stay on top of the most recent information regarding SMA. I find that other parents are the best resource for learning about SMA and all that comes along with it. Reading parents questions and responses on SMA Space helps to know what we should be doing for Nicholas, what to ask his doctors about, and what to be aware of as his disease progresses. Seeing photos posted on Facebook of children overcoming the odds and celebrating their third, fourth, and fifth birthdays gives us so much hope. It also creates a community where we celebrate accomplishments no matter how small. Reading about new research studies and break-throughs on Families of SMA helps give us hope that a cure might be found soon. FSMA is also a great resource for getting equipment for Nicholas. They were so wonderful in loaning us a car travel system for Nicholas. The Gwendolyn Strong Foundation is particularly close to my heart, as Victoria Strong was one of the first SMA parents to reach out to me after Nicholas's diagnosis. Their site helps to provide up-to-date information regarding SMA and also highlights their daughter, Gwendolyn, for which the site is named. I have never had the pleasure of meeting Bill or Victoria Strong, but they have always been available via email to offer helpful suggestions and resources for our son. We are also fortunate to have another family, the VanderZandens, who have a daughter the same age as Nicholas with SMA. Our families run a similar parallel in that they have Kayla with SMA, and another daughter (close in age to Ella) who is SMA-free. They live in Oregon so we have seen them several times and Shawna and I keep in touch via phone at least once a month. We share information about SMA, new things we are trying with our kids, their struggles & triumphs, all which help me feel not so alone in parenting a child with a progressive disease.

At this point, in terms of life and all that it has thrown at us, I would say, it's pretty darn good right now. I love my little family of four and treasure every moment we have together as a family.