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2015 Voices

Amanda Bernier, mom who battled ALS to breastfeed daughter, says she's still fighting

In September, Amanda Bernier took to her Facebook community — Amanda’s Angels — to write about the challenges her diagnosis of amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, brought to her efforts to breastfeed her daughter, Arabella. The touching post went viral, and Bernier inspired thousands of people both with her determination to breastfeed, and her positive outlook as she battles the fatal disease.

At the time when her story was going viral, Bernier’s goal was to live to be present at Arabella’s first birthday party. The Connecticut mom met her goal — even planning the November party herself with the help of friends and family. Here, Bernier shares the details of Arabella’s birthday, updates on her condition and her thoughts on what could be her last year with her family as a part of "2015 Voices," a special series of essays and interviews with newsmakers behind some of TODAY's biggest moments of the year.

Courtesy of Amanda Bernier
Amanda Bernier and her husband, Chris, held three birthday parties for Arabella this year, one of which was a costume party.

I am happiest when I am with Arabella. I am lucky to be able to see her grow up and meet her milestones. I always wanted to be a stay-at-home mom, and I am thankful for that opportunity.

The hardest thing for me is knowing that I will not see my precious baby grow up. Before she was born, I was OK with dying while Arabella was a baby, but now it is more difficult to accept because of how much I love her. She is such a joyous, loving and interactive baby — I love watching the beautiful person she is becoming.

Courtesy of Amanda Bernier
Since Arabella has a fall birthday, the theme Bernier chose for her parties was 'Our little pumpkin is turning one.'

I am so very grateful to still have been around to plan her birthday. Thanks to my computer, I was able to do everything for the party that I would have if I were healthy — creating the invite list, ordering invitations, finding decorations to make on Pinterest, and planning the menu.

We are so blessed because about twenty people played a role in preparing for the parties — yes, parties. Arabella is a lucky duck because she had three parties to accommodate all of the people that we love in our house at one time. It just was not logistically practical to get me out of the house to go somewhere where everyone would fit, so we held three versions of the party, all with the theme, “Our Little Pumpkin is Turning One.”

Courtesy of Amanda Bernier
Bernier and her husband, Chris, open gifts with their 'little pumpkin,' Arabella, on her first birthday.

The whole house looked perfect, and the parties were amazing — how I pictured them to be, only better. We invited everyone who was involved in our care — our families, hospital staff, friends — to show them that their hard work had paid off. You could feel the love, and I am forever grateful for all the people that made Arabella’s first birthday so special.

When I was diagnosed with ALS, I prepared birthday and Christmas cards for Arabella to open in future years when I’m no longer here. I am so thankful to have been present to give Arabella the first of those cards — her first birthday card — along with a piece of my jewelry. She cared more about the card, though.

Courtesy of Amanda Bernier
After being diagnosed with ALS, Bernier began preparing birthday cards to leave behind for Arabella's future birthdays. This year, she was present to give Arabella her first birthday card, along with a piece of her jewelry she had set aside for her daughter.

My next goal is to live until there is a cure for ALS. Thanks to everyone who has participated in the "Ice Bucket Challenge"; there is a lot of good research being done.

I did not have much function left to lose at the time that my photo went viral. However, I am in more discomfort and my eyelids have gotten weaker, so they close less. This means they are constantly blurry, making it difficult for the computer I use to communicate to track my eyes well. I get tired much easier and I drool more because I cannot swallow.

I am not sure if I will be here for another year — it depends on if God still has more plans for Him to work through me. Part of me is selfish and wants to be here with Arabella, but I also hate watching all that my husband, Chris, has to do. It kills me inside that he has so much to worry about and to see him so exhausted. It makes me sick when I think of the medical debt that I am leaving behind for him.

It is also difficult to hear your baby cry and not be able to do anything about it except watch others comfort her. But, I don’t take being here for granted — at least I can see her and make parenting choices with Chris.

I hope Arabella will know how much I love her, and that she showed love to me. I would like for someone to tell her how we defied the obstacles we overcame to breastfeed, and what a special time we shared between us.

I want her to know that she knew who I was. If someone says, “Where’s Mommy?” she points at me. Every night before her bedtime we cuddle for a bit. She snuggles calmly in my arm, and knows not to touch my tubes.

I pray that Arabella will grow up to be kind, loving, careful, joyful, intelligent and courageous. In everything I have written for her, the tone is love. When she reads my letters, I want her to feel my love emanating from the page.

Amanda Bernier
Bernier and Arabella in fire truck pajamas

In one of my letters, I wrote to her to thank her for everything that she has done for me — the joy she has brought to my life, and the way she has given me strength to wake up each day.

In other letters, I try to give her the confidence to pursue her dreams, encourage her to be kind and loving, and let her know there is always a positive side to any situation.

She also inherited my smile. I tell her how powerful it is — how she will be able to brighten someone’s day with just a simple smile.

Throughout the year, there have been many obstacles outside of our control, but our motto is "Adapt and overcome." As a family, we will get through anything.

I have learned what true, unconditional love is. I tear up every time I think about how much I love her. I am so blessed to have the opportunity to be a mom.

—As told to TODAY.com’s Terri Peters.

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