photos by Suzzane Brown – Simply By Suzy, interview by Monica Royer

Amanda Santoro is the President and Co-Founder of Little Giraffe Foundation, created in honor of her daughter Cheyenne Elise, who was born 3 1/2 months prematurely and lived only 6 weeks. Amanda and her husband wanted a way to offer support to others living through the NICU experience and also to work toward improving the life of preemies through neonatal research funding. Amanda resides in Mount Prospect, IL with her husband Mike and their two children, Nathan (5) and Evan, Cheyenne’s twin brother (4).

Tell us a little bit about the journey that led you to Co-Found the Little Giraffe Foundation.

In February 2011 I gave birth to micro preemie twins, Cheyenne and Evan, who were born 3 ½ months early (25 weeks 6 days). Before the birth we had understood our babies, born this early, would face many tough weeks and months ahead. However, nothing can truly prepare you for everything the NICU experience brings.  Immediately after birth, Cheyenne and Evan were intubated, loaded with IV’s, and swiftly swept away to the NICU with us barely getting a look at them. The hours that followed were full of shock, fear, and the unknown. The weeks that followed were a flurry of operations, medications, procedures, and countless heel sticks. The NICU was a terrifying place where a foreign medical language was spoken, monitors were constantly alarming, and we could not hold or help our babies – it was heartbreaking.

The ups and downs of the NICU journey are no joke. At first there were no “good” days, only “better” days and “not so good” days. Even on the days that seemed to be going better could very quickly make a downturn. And that is how we lived for the first few weeks, watching our babies fight to stay alive. Shortly thereafter we learned that Evan needed heart surgery and that Cheyenne’s kidneys were having difficulties. Our one pound Evan recovered well from surgery, however Cheyenne’s condition was not improving. In the end, we were only able to bring home one of our babies, Evan, who is amazingly a happy and healthy 4 ½ year old today. In honor and in memory of our daughter, Cheyenne, my husband and I started Little Giraffe Foundation (LGF).  The organization’s missions are to support NICU families to provide hope and let them know they are not forgotten and to fund neonatal research to improve the quality of life of premature babies.

Walk us through a typical day for you, as the President + Co-Founder of the Little Giraffe Foundation and as a mom to two young boys.

By day I work for a pharmaceutical company and by evening (and weekend) I work as a mom and Little Giraffe Foundation President.

My hours at LGF are mostly spent working with hospitals to organize NICU donations, managing fundraising events, and talking with NICU parents. Around this time of year, I also spend much of my time reviewing proposals for our annual NICU Support Grants and Neonatal Research Grants, which will be awarded in July/August.

My boys and I love to spend our time after dinner taking walks and bike rides to the park and on rainy or cold days, having our own private dance parties. The crazier the better. As Nathan (5) and Evan (4) have gotten older, helping the “sick kids” has become part of them. They pack NICU gift bags, volunteer at events and are always pointing out things that we could give to the “sick kids” to make them feel better. I have been so humbled by the empathy they have shown at such a young age!

How are you finding a work/life balance?

I am lucky enough to have a wonderful network around me whenever I need them. I have my amazingly supportive husband, Mike, my encouraging mother and mother-in-law, and my LGF board members I turn to for ideas and sanity checks.

Although there is little downtime in our lives, the work we do for Little Giraffe Foundation is taken on by everyone in the family. I consider the time that I spend building and carrying out the missions of LGF as time spent with my daughter and the perfect tool for showing my boys love and compassion for others.

What's the best part of being a mom so far? Hardest part?

Since becoming a mom I have been able to relive the simple joys of childhood and to revel in the pure curiosity and amazement as the world is experienced and explored by little ones. As my boys have grown, so has my love for them, more than I could have ever imagined. I also cannot contain the pride I have when I see them learning or figuring out a problem, but even more so when I see them helping one another along the way. Nathan and Evan have reminded me to celebrate puddles to splash in and appreciate the rain boots that keep us dry!

The hardest part of motherhood for me is probably an obvious answer. Finding ways to connect to my sweet angel daughter Cheyenne is something that I never, ever thought I would have to face in my life. As I watch my boys make their way through the adventures of life, I celebrate along with them, and some of the time thoughts of Cheyenne drift in as well and I wonder how the current moment would be different with her in it. Although I can imagine her in a soft pink dress (likely full of mud if she takes after me), I likely would not appreciate the moment as I should. Losing my daughter has been the most difficult thing I have ever faced and continue to face every day. Through the years since, however, I have become more reassured that although my life has been altered dramatically and tragically, that my life trajectory has changed for the better. I have my daughter to thank for this, for teaching me early in my life to appreciate everything and to experience life as fully as possible and to give back often.

What has surprised you most about becoming a mother?

Shortly after the birth of my oldest, I quickly realized that my life would never be the same. I know that this is what everyone says, but it hit me like a ton of bricks.  Suddenly getting a shower was a luxury good and a trip to the grocery store was an epic journey (that may end before it began). It was so much harder than I ever expected. Nearly 5 ½ year later I am astonished by what my boys know and what they can do. Nathan plays games with Evan to test his knowledge of letters (granted if Evan gets it wrong, the foam letter is thrown in his direction), but nevertheless it is wonderful to see. I am proud that the sibling love is outweighing the sibling rivalry, at least for the time being.

What are some of your favorite things to do with your sons, in and around Chicago?

We started exploring the Peggy Norbert Nature Museum a few years ago and recently the Museum of Science and Industry has become a front-runner. Now that the weather has turned nicer, we spend time outdoors whenever possible. One of our favorite spots is the Morton Arboretum with its endless trails and exciting hedge maze! We are also looking forward to visiting Millennium Park and exploring the new Maggie Daley Park.

What are you most looking forward to in the coming months as your sons continue to grow?

Last summer Nathan learned to ride a 2-wheeler and I am excited to see Evan try this year! The main excitement that the whole family is looking forward to is our trip to North Captiva, FL. We discovered this tiny island last year and it is perfect for us and our boys. There are no cars as the island is only accessible by boat, the beaches are beautiful and never crowded, and it is teaming with wildlife! It is the perfect place to find relaxation and spend time with my family.

How do you relax when you find a moment to yourself?

I love to run. I run whenever I can get outside for an hour and go. I also practice yoga. It helps me collect my thoughts and helps keep stress levels manageable! I also love a great cup of green tea!

What's the best advice you've received from another mother?

Live in the moment and enjoy the moments while they last. I often found myself cleaning the house when I should have been crawling on the floor racing Matchbox cars with my boys. Some of the best moments I spend with my boys are after bath time when we lay on their bedroom floor and I listen to their little minds racing with ideas, “what ifs” and grand plans for the future!

Your work at the Little Giraffe Foundation is inspirational. What can people do if they want to learn more + help?

We are always looking for people to get involved with Little Giraffe Foundation! We regularly provide NICU gifts to 11 hospitals in Chicagoland and are always looking for opportunities to expand our reach and find volunteers to help make deliveries.  We also welcome people to attend our fundraising events throughout the year, volunteer, and of course donate to our cause! To learn what we are up to, you can visit our website or follow us on our Facebook page.