Donor Spotlight: “She’s our little miracle!”

Marissa Simon

Ashley Asti, the Secretary of Brittany’s Baskets and a close friend, recently got to talk to Marianick, one of our donors and the mom of Marissa, an adorable and smiley daughter with Down syndrome. Marissa was born earlier this year and is lovingly described by her mom as a “little munchkin” and a “miracle.” Below, we share some of our favorite excerpts from the conversation. Marianick speaks with love and wisdom and kindness and we’re so grateful that we get to share in her family’s journey.

Please, read on!

Ashley: Tell me about your journey with Marissa, from the beginning.

Marianick: She’s our little miracle! You have no idea how much excitement and joy she brings. She has four living grandparents that are just overjoyed to meet her. They waited many, many years for her. They’re just so happy that she’s in their lives. She has about 20 cousins, she has 10 aunts and uncles. I mean, she’s just surrounded by so much love.

So many people prayed for her because, you know, we didn’t have children for so many years that, when she came along, it was just amazing, exciting news. And that has not changed. Her diagnosis does not change anything about how excited we are or how excited her family is to have her. She’s a little miracle!

Ashley: Many of the parents we connect with who receive their child’s Down syndrome diagnosis before birth come to us looking for support and guidance in how to handle the possible health concerns they and their child may have to deal with. Can you speak to this, offer any advice to expectant moms and dads?

Marianick: It’s important to be well-informed, but not to let your fear overshadow everything else. Because they’re very strong, these little babies.

Marissa was born with two small holes in her heart and a leaky valve. The two holes have since closed up and the leaky valve is very minor.

But we were very confident we were in good hands. We had a lot of trust and faith in our doctors—and you just have to let go a little bit and say I have faith that this baby is strong and that we’re going to do absolutely everything we can for her. The rest you kind of have to let it go a little bit and not get so caught up in the possibilities that you miss the moments of joy along the way, even in the pregnancy when you’re stressed out. There is a lot of joy seeing the baby in the ultrasound, feeling the baby kick, meeting certain milestones.

So, don’t lose the joy in the pregnancy because you’re so worried because, thankfully, we’ve come such a long way in our medical advancements. And the babies are just so resilient, it’s amazing.

I would just say do your best to enjoy the moments in your pregnancy because the baby is no different than any other baby. She’s not very different at all.

Ashley: I think part of Brittany’s work is to show that babies with Down syndrome are, as you said, not very different at all. So can you talk about your connection with Marissa while you were pregnant? You know, tell us what it’s like, for moms of children of all abilities, to have a being growing inside you?

Marianick: Because the pregnancy was so high risk, I had the pleasure of seeing my little munchkin on the ultrasound every two weeks, so it was just amazing to see her change and her grow and, you know, she looked no different than any other baby or any other ultrasound I’ve seen. She was so cute, she had these really chubby cheeks, and very pretty little lips.

Every month, you’d just see these changes in her and she kicked all the time and she had these little hiccups, which I thought were so cute. And she responded, like, if I would drink something cold or eat something sweet. I definitely enjoyed her a lot when she was in my belly.

(Jumping ahead to Marissa’s birth story and the months that followed)

Marianick: I had a caesarean section and, when she was born, my husband was like, “She’s perfect, she’s perfect, she’s perfect.” We just sort of never looked back.Marissa Simon, birth

You know, I have nothing to compare her to because she’s my only child. So everything she does is the way it should be. I don’t compare her to anyone. I don’t expect her to do different things, but I expect her to do everything a typical baby should do. Her timeline might be different, but I don’t really know that because I haven’t been around babies all my life. I’m an only child, I really wasn’t around babies. So what she does, she just does in her own time.

She’s doing great, she’s crawling like a little caterpillar.

So my advice is don’t get caught up, don’t compare, like, ‘That baby is going faster, standing sooner.’ Just enjoy them. She’s very smiley, she’s very loud. She’s very feisty.

She has my husband’s hair. She has my little nose, and she loves music like I do. So, of course, she’s like us. But sometimes you forget, you think she’s going to be different from us. But, no, she’s not. She’s just like us.

The connection is truly the same as a typical baby. I never had any doubt that she was mine, that she’s just like me.

Ashley: What has Marissa taught you?

Marianick: She’s fierce. She’s very fierce. I didn’t necessarily expect that. I thought maybe she’d be quiet, sleepy. But, then, I get this baby and she’s like fierce and feisty and she yells and, just, she’s not exactly what I expected!

Ashley: Fierce! I love that.

Marianick: Yes! She is fierce and she’s just not like me in that respect. I’m very laid back and, so, she’s taught me—I think she knows that she might have some challenges ahead and she’s telling me that we’re in this together and I have to be fierce, just like her, because we’re going to get some stuff done in her life. And that mama has to step up and really be fierce like her because we’re going to have to fight for some things she’s going to want eventually, maybe some opportunities that she’s not necessarily going to get if I don’t step up and fight for them, so she’s really taught me to be fierce. You wouldn’t believe how much energy she has!

Ashley: What do you wish for her?

Marianick: “I always pray that she lives a healthy, happy, and holy life, holy being spiritual. Whatever journey she’s on, I just want her to be a kind person, to have compassion, to love others. If she wants to be religious, that’s wonderful, but whatever holy means in her life, that she feels peace, that she really appreciates the universe—just everything. And happy, whatever makes her happy. I want her to do whatever makes her happy.

And to live a healthy life. I strive to keep her really active and give her a lot of motivation to keep moving, keep exploring, keep a healthy attitude.

So, yes, a healthy, happy, and holy life in whatever form she chooses to make that, and I will be thrilled.

Ashley: I know that you received a basket from your local Down syndrome organization when Marissa was born. Can you tell us how that made you feel or why it matters?

Marianick: We got a basket from our local Down syndrome organization when we joined when Marissa was, maybe, three months old . . .

I said to myself, I definitely want to pay this forward because another family will be in my position and they’ll want to know how much the community is there for each other. It is scary at the beginning, it may be scary again . . . but I know that other people have walked this road and I’m going to lean on them and look to them for advice. I think the basket is just letting people know, “We’re here, we welcome you and your baby to this amazing community, and we’re ready to support you today and in nine months or in nine years. Whenever you have the need, we’ll be here.” And I love it.

Ashley: Mmm, yes. I’m going to pass that along to Brittany. And, I guess, since she’s not here, I can brag about her a little! What I would like you to know, as a mother of a daughter with Down syndrome, is that Brittany came up with this nonprofit herself. It was her own idea and vision and she brought it to her family—and she has a support staff, so at one of what we call her “circle meetings,” she brought it up and this is how it started.

But what I also want to say, on a personal note, is that Brittany and I are a year apart in age and she has been such a joy in my life. She has shown me what true friendship is and I’m so incredibly grateful for her. I wish that level of friendship for Marissa because I feel like our friendship is mutual, it goes both ways between me and Brittany and it’s a true pleasure. I just wanted you to know that.

Marianick: That’s so great! And I’m so glad you two have found each other. I hope Marissa will have a great friend like you and like Brittany and that they’ll do fun, girly things together.

That’s what I hope for Marissa—happiness—and friendship has a lot to do with that. A happy life filled with friends and great experiences. You two give me a lot of encouragement and hope for her future. You know, just good girlfriends—you can’t go through life without them!

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