Amanda Bernier, mom who battled ALS to breastfeed daughter, says she’s still …
December 21, 2015 - als
In September, Amanda Bernier took to her Facebook village — Amanda’s Angels — to write about a hurdles her diagnosis of amyotrophic parallel sclerosis (ALS), ordinarily famous as Lou Gehrig’s disease, brought to her efforts to breastfeed her daughter, Arabella. The touching post went viral, and Bernier desirous thousands of people both with her integrity to breastfeed, and her certain opinion as she battles a deadly disease.
At a time when her story was going viral, Bernier’s idea was to live to be benefaction during Arabella’s initial birthday party. The Connecticut mom met her idea — even formulation a Nov celebration herself with a assistance of friends and family. Here, Bernier shares a sum of Arabella’s birthday, updates on her condition and her thoughts on what could be her final year with her family as a partial of “2015 Voices,” a special array of essays and interviews with newsmakers behind some of TODAY’s biggest moments of a year.
we am happiest when we am with Arabella. we am propitious to be means to see her grow adult and accommodate her milestones. we always wanted to be a stay-at-home mom, and we am beholden for that opportunity.
The hardest thing for me is meaningful that we will not see my changed baby grow up. Before she was born, we was OK with failing while Arabella was a baby, yet now it is some-more formidable to accept since of how most we adore her. She is such a joyous, amatory and interactive baby — we adore examination a pleasing chairman she is becoming.
we am so really beholden to still have been around to devise her birthday. Thanks to my computer, we was means to do all for a celebration that we would have if we were healthy — formulating a entice list, grouping invitations, anticipating decorations to make on Pinterest, and formulation a menu.
We are so sanctified since about twenty people played a purpose in scheming for a parties — yes, parties. Arabella is a propitious steep since she had 3 parties to accommodate all of a people that we adore in a residence during one time. It usually was not logistically unsentimental to get me out of a residence to go somewhere where everybody would fit, so we hold 3 versions of a party, all with a theme, “Our Little Pumpkin is Turning One.”
The whole residence looked perfect, and a parties were extraordinary — how we graphic them to be, usually better. We invited everybody who was concerned in a caring — a families, sanatorium staff, friends — to uncover them that their tough work had paid off. You could feel a love, and we am perpetually beholden for all a people that finished Arabella’s initial birthday so special.
When we was diagnosed with ALS, we prepared birthday and Christmas cards for Arabella to open in destiny years when I’m no longer here. we am so beholden to have been benefaction to give Arabella a initial of those cards — her initial birthday label — along with a square of my jewelry. She cared some-more about a card, though.
My subsequent idea is to live until there is a heal for ALS. Thanks to everybody who has participated in a “Ice Bucket Challenge”; there is a lot of good investigate being done.
we did not have most duty left to remove during a time that my print went viral. However, we am in some-more annoy and my eyelids have gotten weaker, so they tighten less. This means they are constantly blurry, creation it formidable for a mechanism we use to promulgate to lane my eyes well. we get sleepy most easier and we drool some-more since we can't swallow.
we am not certain if we will be here for another year — it depends on if God still has some-more skeleton for Him to work by me. Part of me is greedy and wants to be here with Arabella, yet we also hatred examination all that my husband, Chris, has to do. It kills me inside that he has so most to worry about and to see him so exhausted. It creates me ill when we consider of a medical debt that we am withdrawal behind for him.
It is also formidable to hear your baby cry and not be means to do anything about it solely watch others comfort her. But, we don’t take being here for postulated — during slightest we can see her and make parenting choices with Chris.
we wish Arabella will know how most we adore her, and that she showed adore to me. we would like for someone to tell her how we defied a obstacles we overcame to breastfeed, and what a special time we common between us.
we wish her to know that she knew who we was. If someone says, “Where’s Mommy?” she points during me. Every night before her bedtime we cuddle for a bit. She snuggles quietly in my arm, and knows not to hold my tubes.
we urge that Arabella will grow adult to be kind, loving, careful, joyful, intelligent and courageous. In all we have created for her, a tinge is love. When she reads my letters, we wish her to feel my adore emanating from a page.
In one of my letters, we wrote to her to appreciate her for all that she has finished for me — a fun she has brought to my life, and a approach she has given me strength to arise adult any day.
In other letters, we try to give her a certainty to pursue her dreams, inspire her to be kind and loving, and let her know there is always a certain side to any situation.
She also hereditary my smile. we tell her how absolute it is — how she will be means to lighten someone’s day with usually a elementary smile.
Throughout a year, there have been many obstacles outward of a control, yet a sign is “Adapt and overcome.” As a family, we will get by anything.
we have schooled what true, umbrella adore is. we rip adult each time we consider about how most we adore her. we am so sanctified to have a event to be a mom.
—As told to TODAY.com’s Terri Peters.