Contributor: Amber-Joi

Amber-Joi

Empowered by possibility

When I tell people that Céline has SMA, they often say things like, "I'm so sorry, that must be so hard for you." But for me, the truth is that I'm comfortable and happy with the busy life that comes along with being an SMA mom. Of course, when I first got the news, it was an extremely difficult time, to say the least. However, at this point, I have completely accepted Céline's diagnosis and have adjusted.

“SMA is a part of who Céline is. It will always be a part of her and I love everything about her.”

I don't think about her diagnosis much from day to day. We've made many modifications to our everyday life, but it's second nature at this point. Céline does just about everything a typical child would do (albeit differently), and she fully enjoys life. I love my life as her mom. She is happy, and that makes me happy.

With that said, she does have limitations due to her disability. For the most part, she seems completely unbothered by her constraints, but there are some days that are hard for us. There are days when she falls a lot, and I constantly have to pick her up because she can't get up on her own yet. There are activities that she simply can not do, no matter how much I try to make them accessible. There are times when she is frustrated. And I get frustrated too.

There are also times when I worry about her future. But these are feelings that every parent feels, whether their child has SMA or not. Frustration, confusion and fear are part of parenting. That's the first thing I remind myself when I feel down - that these feelings are a natural part of life that I should not focus on because there is no room in my day, and they do not serve me. Those negative feelings make my job as a mom even harder, and I simply don't have time for them.

I choose to focus on the positive and the possibilities. Usually, I can will my thoughts into a positive space on my own. But sometimes, that's just not enough, and the negative thoughts loom. In those moments, I lean on my support system. For instance, my husband reminds me that we are fortunate enough to be facing SMA in a time where so much more is known about how to manage the disease than in the past. My best friend also assures me that I'm doing a great job and that Céline has come a long way. At times, I turn to my iPhone, where I have an album of Céline's milestones since her diagnosis.

When you're in this journey day in and day out, as I am, it can be hard to see all that we have overcome, and how much has changed. But when I am able to see pictures and videos of Céline through the months and years, it reminds me that she is remarkable.

“Nothing motivates me and lifts my spirits more than my daughter. I get my inspiration from her. She helps me focus on the possibilities.”

Amber-Joi

Advocating for your child

When my daughter Céline ("jelly bean") was diagnosed with SMA, I was warned that I should not expect her to crawl. She wasn't likely to develop the strength for that particular skill within the age-appropriate timeframe. I made it my goal anyway.

Crawling in an essential building block for advancing gross motor skills, especially for a hypotonic (low muscle tone) child, like Céline. I was (and still am) doing physical therapy with her every single day and, while I don't have a degree in physical therapy, I know my child. I felt crawling was within Céline's reach. I could see her slowly but surely gaining the strengh to crawl, so I continued to push her. Even though I knew it was possible that she might not achieve our goal, I knew that doing the work toward the goal could only benefit her.

We worked specifically toward crawling for a year and a half. I challenged Céline daily, but tried not to overdo it to the point of failure or frustration. I also tried to make the process as fun as possible - because, let's be honest, that's the only way to get a toddler to do physical therapy. We found a therapist whose visions aligned with my goals and six months after working together, Céline was crawling.

We parents know our children best! And if there is something that can be done to help them reach a goal, or to make life more accessible, then as parents, we should do our best to support them.

In conjunction with Céline's medical team and my husband, we make decisions that we feel are best for her, even if they do not fit the mold. I cannot stress enough that I take into account Céline's doctors opinions and hold them at a very high regard since they are the experts. But there are certain decisions that only a parent can make.

Now that Céline is three, she is starting to set her own goals, regardless of what ANYONE says.

“Recently, she told me that when she gets older, she is going to run and jump. So, I’m adding that to my list of goals for her future - and I will be advocating for whatever tools we need to fulfill that goal when the time is right.”

We are currently working on standing up without support from the floor and walking up the stairs. I'm also learning what it means to have a special needs child in school and that has opened up a whole new door of excitement, fear, uncertainty and, most importantly, advocacy for me.

“I did not wake up one morning and say to myself, 'I’m going to become an SMA advocate.' But the job comes with the territory and I’m content to do the work. The rewards are endless.”