No matter how hard you think life with a newborn might be, it's not nearly as hard as it is for first-time mom Amanda Bernier. Former firefighter and EMT Bernier, 31, was diagnosed with ALS when she was 29 and just two weeks pregnant. While the diagnosis wasn't a shock, as both her mother and grandmother passed away from the degenerative disease, its rapid progression was a surprise.
Bernier shares in a Facebook post, "I went from running races, working in a lab and firefighting to not being able to move anything but my head and on a ventilator in 5 months. ... My neurologist did not know how my body would handle a major surgery or if I would live long enough to see [my daughter]." Bernier was admitted to the hospital ICU at 24 weeks pregnant and remained there for 4 months until her daughter Arabella was born happy and healthy via C-section.
The new mom goes on to detail how, despite being paralyzed from ALS, she really wanted to breastfeed her daughter and store up enough milk in the freezer for when she was gone. And what this amazing mama wants, she makes happen. With the support of hospital staff, friends and family helping to prop the baby up to her breasts, she was able to successfully breastfeed (painful cracked nipples and all).
Pumping was a similar challenge, but she finally concocted a way to make it work and now has a freezer full of pumped milk for her sweet little girl. She even delayed taking pain meds so she wouldn't have to "pump and dump." She recently posted a picture of her nursing on her Facebook page to help other new moms struggling to breastfeed and urged viewers to "Please share with someone who is considering to stop breastfeeding to let them know that they can overcome anything!" Seriously, if that's not motivating, we don't know what is.
While Bernier was initially concerned that Arabella wouldn't connect with her since she can't talk or move, they've found other ways to build that unspeakable bond. She shares that Arabella "sits on the end of my bed and plays. Now I know that she knows who I am and that she loves me. She waves and points to me when she is near. She will look at me when someone says 'where's mommy?' The best thing is when she gives me her huge smile when seeing me after she wakes up and any time she sees me."
Arabella is now nine months old and while Bernier is "heartbroken" than she won't be around to see her grow up, she is tirelessly working to ensure that should her daughter also get ALS when she grows up (there's a 50 percent chance), there's a cure to save her. She recently participated in her second Ice Bucket Challenge and called on "Tonight Show" host Jimmy Fallon to help spread the word. Bernier tells NBC Connecticut, "It may be too late for me, [b]ut it's not too late to find a cure for my daughter or future ALS patients."
She concludes her Facebook post by sharing, "It breaks my heart that I cant be the mother that I wanted to be. It crushes my soul that she wont have her mother for much longer and she will grow up with out me. However, everything happens for a reason, so I am glad that I will be by her side as her angel."
A mother's love is truly unending and we know Arabella will always know the incredible legacy her mom worked so hard to leave behind.