Mother’s Day has always been about love. Unconditional love. Can you think of any other instance where someone can fall head over heel in love with a person they have yet to meet, talk to, see, touch?

I remember thinking while I was pregnant that I couldn’t wait to teach my daughter all the things. I very quickly learned that on Mother’s Day us moms should be thanking our children; they made us mothers. They are also the ones who do the teaching.

When I first met Kristen, I fell in love with her. She radiates with joy. She always has a beautiful smile on her face. Basically, she’s a great, happy person. Kristen’s birth was one where as a doula, I had to do one of the harder, and more important roles as a doula; advocate. There were times where I fiercely protected her, John, and their (nearly born) daughter’s rights, and did all I could to ensure they were informed and indeed consenting. The combination of her warmness, and that experience could only lead to a forever friendship.

Then one day after Laila was born, I spoke to Kristen and decided based on the call we should get together in person. I’ll never forget sitting on my living room floor while Kristen held Laila, and my daughter tried to love on her. Gentle, gentle with baby Laila we said to Ingrid. But that wasn’t what touched my heart. It was the tears pouring down her face while she told the beginning of the story she shares below. I hurt because I didn't know how to fight for her or advocate for her in this circumstance. I couldn’t doula Kristen this time. I simply sat there with her in it, and offered my unwavering support and friendship.

Now, it’s this incredible mom doing the advocating and protecting. She does it all with love. I’ve always believed that we are meant to be our children’s mothers. Laila was meant to have the incredible parents she has. She was meant to make Kristen into the mother that she is.

I am so honored to be your friend, Kristen. I am so honored to have been your doula. I am so grateful for your love and bravery to share your story with us today.

I want to wish you Happy Mother’s day.

Kristen is the kind of mother, and person the world needs.

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you are lucky, she just might be the teacher who turns you into the person you are supposed to be.”
- The Water Giver

My name is Kristen Cagadas and I am the proud and absolutely smitten mom of Laila, our 16 month old daughter. Desirae came into our lives as our Doula and quickly became a dear friend. The past 16 months have been a rollercoaster ride for our family. We’ve learned how to operate off little sleep, how to make the quickest pot of coffee, how to change diapers on every surface and how to navigate being parents of a child with special needs. This is our raw and real story.

On January 10th, 2019 at 10:00AM, I became a mother. With a thick head of black hair and just under 6 pounds, I fell head over heels in love with my daughter Laila. The first time I held her I felt the greatest joy I’ve ever known and in that moment, her life instantly became the focus and the most important part of mine.
As a first time mother, I was not naïve to the fact that it would be tough. There would be days that I would question if I was doing enough or if I was good enough. There would be days that showers were impossible and I could count on one hand the hours of sleep I had gotten throughout the night. Nursing wouldn’t be flawless or seamless or easy. All of these things I learned, but also had a heads up they were coming. They were on my radar; I was somewhat prepared. They came as words of wisdom and tips from all types of mothers and books.

What I wasn’t prepared for, nor could have ever imagined, was receiving the diagnosis that my daughter had a rare chromosome disorder when she was just under two months of age.

There was no preparation for this. No heads up. No signs. No warning. I had a healthy pregnancy. I had the typical genetic testing done while I was pregnant and nothing was detected. We do not have any family members on either side with genetic conditions or special needs.

This wasn’t how our journey was supposed to go. This isn’t what we had planned. This isn’t what we expected. Why us?

The Story of the Diagnosis:
Laila was born with a lower birth weight. This was surprising to my husband and I as neither of us were small babies, but nonetheless, her weight was not alarming. Laila spent a few days in the NICU for low blood sugar, but as soon as that was adjusted, we were headed home. At one of her first doctor appointments, the doctor noticed a cleft along her back. We had an ultrasound done to make sure there were no issues with her spine; we were overjoyed when we got the news that everything looked great and this marker was just on the surface. At the next appointment, the doctor heard a heart murmur. We met with a cardiologist who explained that heart murmurs were common in infants and they often mend on their own – he recommended we come back in 3 months. Some more great news! Later that week, early in the morning, I found Laila had a hernia. The nurse on the other end of the 24 hour call line tried to assure me that what I was seeing was due to infant hormones. I was unconvinced and insisted on getting in to see the doctor that morning. Surgery was scheduled for the following week.

While Laila was under anesthesia, the doctors saw that her heart condition was more severe than they originally thought. While we were waiting with our month and a half old daughter in the recovery room, the doctors expressed their concerns and recommended we follow up with them the next week. At the next appointment, the doctor suggested we had Laila tested for something called Williams Syndrome. We had never heard of it. Panic began to sink in. The cardiologist explained that the syndrome could have a variety of different medical components and that individuals with the syndrome tend to have an affinity for music. I was completely confused at what this all meant but in my head understood it to mean that this syndrome could explain the medical situations we had encountered and our daughter may be talented musically. It didn’t sound major.

Fifteen minutes later, reality set in. On the drive home from the doctor’s appointment I resorted to Google. Huge mistake.

My mind was flooded and overwhelmed as I scrolled pages and images of Williams Syndrome – learning delays, developmental delays, special needs, severe cardiac issues, an extensive list of potential medical problems affecting almost every system…. I sobbed. I remember looking over at Laila sleeping in her car seat and there was a disconnect between what I was reading and the little ball of perfection that I felt an indescribable love for. Looking at her provided the only comfort in this situation. The next week and a half we waited for the results. Somedays I felt like we were waiting on pins and needles and others I knew in my heart that a diagnosis wouldn’t change anything. Laila was Laila. The next week we received the call confirming her diagnosis. Laila had Williams Syndrome.

From the Williams Syndrome Association website: Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music. More information can be found at www.williams-syndrome.org.

It’s been over a year since we received that call. The beginning was the toughest. Adjusting expectations, finding specialists, accepting the news, sharing the news with friends and family – it’s not easy.

We worked through grief and acceptance. Yes, we encountered a period of grief. No, we did not lose our child, but what we lost were expectations. Before receiving her diagnosis, I had never questioned if our daughter would go to prom. I had never questioned if our daughter would go to college. I had never questioned if our daughter would fall in love. It’s not fair to assume these things of any individual, but I had never questioned the likelihood of these things occurring. After grief there was acceptance. I am a special needs parent. I have a child with special needs.

As I sit here, 14 months later, I could not be happier, feel more lucky or blessed to have been given Laila. She is without a doubt the definition of pure joy. I wish I could go back in time and give myself a heads up of all that I would learn in such a short amount of time.

Here are some things I’ve learned:
A diagnosis is not a definition or a life sentence. It gives us cues on what to be on the lookout for/what should be on our radar and what can help. It does not define our capabilities, outline what you are capable of or categorize who you are as a person. Your life is still a blank slate full of possibilities.

The word ‘normal’ should be stripped from our vocabulary when referring to human beings. Being described as not normal implies there is something wrong or bad about the situation. Laila is unique, beautiful and perfect. She may not fit the “typical” mold, but she was created the way she was intended to be.

The life I am currently living and the love and joy I have for my daughter far surpasses what I could have ever imagined. The plan that is in place for my life is better than what I could have planned. Trust that your path will lead you to the place you were meant to be.

My child’s health and happiness was always the priority for me (far above success, being the best…etc.) and I wake up every day to the happiest child on the planet. Her health is stable. I have everything I could have hoped for.

We celebrate ALL of her milestones. Some might take a little longer to get to, but that just means we get to celebrate a little harder. We find so much joy in all of the little moments. This is something I think everyone should do more of.

I see far more beauty and grace in the world. I have more tolerance. More appreciation. More admiration. No one is better than anyone else. No one is less. We all have our unique challenges and extraordinary gifts.

The best thing about all of this? We have the most amazing family, friends, community and support system in the world. Our daughter is SO loved by SO many people – it is absolutely beautiful. We could not have done this alone. Although we live far from our family and longtime friends, they’ve been instrumental in our journey (courtesy of endless Facetimes and lots of flights). Our New England friends (more like family) have showered us with endless love and support.

Community is a beautiful thing and Laila has brought us closer together.

…and then there’s BeanZ & Co. Where to even begin. BeanZ & Co. is an inclusive coffee café employing people with and without intellectual and developmental disabilities and demonstrates the possibilities in all of us. They are located in Avon, Connecticut, minutes from our house. We decided to pop in there one afternoon for lunch with our newborn Laila. We fell instantly in love with the environment, the coffee and the food. We knew we would be back. Flash forward a month and we had recently received Laila’s diagnosis. We went out for lunch and I remember sitting at the table choking back tears as I asked one of the staff members if they knew anyone I could speak to that had resources for special needs parents. Kim Morrison and Noelle Alix, the owners of BeanZ & Co., introduced themselves and our lives were changed.

As mothers of daughters with Down syndrome, Kim and Noelle could completely relate and understand the feelings of new parents that had recently received a diagnosis. Seeing the joy that their daughters, along with so many individuals that work at BeanZ, brought to everyone was pure comfort. Yes they brought joy, but they were also leading successful and important lives. Not only did we learn from BeanZ the endless possibilities that could be there for Laila, but also how important it is to create a world in which everyone can thrive.

We celebrated Laila’s first birthday at BeanZ & Co. and it was the BEST celebration. It was the perfect way to wrap up and commemorate a year that had brought a lot of difficult moments, a lot of growth, a lot of love and a lot of pure joy. I HIGHLY recommend making a stop – the food, coffee and people will change your life.

On occasion people will tell me they are sorry when they hear of Laila’s diagnosis. Some people have told me they give me so much credit for how I raise and parent Laila. Neither are necessary.

I am beyond thankful for Laila’s diagnosis and if I had the chance to take the syndrome away, I would take away the medical concerns. Nothing else. I do not deserve any special credit either. It is an honor to be her parent. The truth is that we are the lucky ones. She will teach us more in this life than we could ever teach her.

I am a mother. My mission in life is to make sure my child is the happiest and most loved human. A diagnosis could never change that. The first time I held her I felt the greatest joy I’ve ever known and in that moment, her life instantly became the focus and the most important part of mine. I am so blessed that this will forever be true.

I wouldn’t change you for the world but I would change the world for you.
- Anonymous

A little doula love to Laila at her first birthday party, from Desirae and her daughter Ingrid

A Mother's Day Tribute: Kristen and Laila