Motherhood can be both joyful and painful, and full of ease and stress. Racquel Tolson knows the highs and lows of mothering well. Her first daughter, Brielle became an angel due to a rare condition at 6 months old.
Racquel used her heartache to fuel her mission-open a shop, BE love Kids, that would raise funds for the disorder and allow her the flexibility to spend more time with her second daughter, Evie.
Here she opens up to us about Brielle, what it was like becoming a mother to a healthy child, and why she chose to focus on organic kids clothing as part of the ethos behind BE love Kids.
Tell us about yourself, and your family.
I’m 35 years old, have been married for 7 years, have a very active 3 year old daughter and a 10 year old boxer/hound rescue dog. Born and raised in Wisconsin, and moved to Florida after college and shortly after that I met my husband.
Four years ago I went through the most difficult time in my life.
I gave birth to our first daughter, Brielle. To our surprise, she was born unable to breathe on her own. As soon as I delivered her, there were no cries and people came rushing into our room to help her. She was immediately transported to the NICU where she stayed for 70 days. After a few, very long weeks, the doctors were able to confirm her diagnosis, Congenital Central Hypoventilation Syndrome (CCHS).
Six months after bringing Brielle home from the hospital, she became an angel.
After this tragedy I was determined to do everything I could to bring awareness to her condition and keep her love and memory alive.
Shortly after her passing I gave birth to our second daughter, Evelyn (Evie). When Evie was about 6 months old, BE love kids started to create form. Brielle and Evelyn (BE) are the loves of my life and are the motivation behind my boutique.
Running BE love kids is a way to channel my heartache into something positive and motivating. It is hard to explain, but I feel it is a way for me to spend time with Brielle even though I can’t physically be with her.
Your business model includes giving back, tell us about the CCHS foundation. How can we help?
I am pretty confident that most people have never even heard of CCHS. I know before Brielle was born, I was clueless of all the genetic disorders that surround us.
After her birth, I basically moved into the hospital and I felt as though I was thrown into a foreign country.
I learned so much about the medical world in a very short time. I quickly learned everything there is to know about CCHS. I was shocked to find out that Brielle’s condition affects less than 2,000 people worldwide! To this day, is is crazy to think that such a rare condition could affect my daughter and turn our world upside down.
CCHS stands for Congenital Central Hypoventilation Syndrome. Congenital means that you are born with the condition. Central hypoventilation means that the hypoventilation (under breathing) is due to a disorder in the bottom of the brain. Syndrome means a group of symptoms that consistently occur together.
CCHS is a rare lifelong and life-threatening disorder, basically your brain forgets to breathe when you go to sleep.
CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more.
The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others.
The CCHS foundation focuses on funding and facilitating critical CCHS research in the US & abroad. They are driven to find better treatment options and cure for CCHS. This year they have already raised $82k of their $150k goal.
The third Annual International CCHS Day was on November 11, 2017 which is a time to raise awareness and funds. Over the past two years, they brought in enough money to fund four vital research projects, including a CCHS mouse drug intervention project. An easy way to get involved with CCHS is to follow their Facebook page.
BE love kids is so excited to be able to give back to this foundation for every piece of clothing sold!
Tell us about Brielle and your inspiration for BE love kids.
Brielle was brave, resilient, loving and just the sweetest little girl! I truly can’t imagine anything harder than to watch your baby have so many complications and not being able to help her.
For some unknown reason, Brielle was not able to smile. This broke my heart but she showed us affection in other ways. I’ll never forget how every morning after relieving the night nurse, I would walk into her room and instead of smiling, she would just kick her little legs with joy. I could tell she wanted to smile so badly.
As I write these words with tears, it is hard to believe this story happened to me and this was my daughter who was born with so many complications. Many kids with CCHS live great, healthy lives and only require breathing support at nighttime. Unfortunately Brielle was born with all the complications CCHS has to offer and then some, and her little body couldn’t keep up.
At first, I didn’t know how to cope after losing Brielle. I had to do something to honor her, to keep her memory alive. I looked into many options and nothing felt right until BE love kids started to come together.
I have definitely put a lot of pressure on myself for this company to do well. I want to be able to contribute to the foundation and help other families in need.
What do you find the most challenging aspect of being a mother?
So thinking back to when Evie was first born, I was definitely struggling with becoming a first time mother to a healthy baby. I remember getting so frustrated with Evie when she was little because she would NEVER sleep, and as many moms know everything is hard when their is lack of sleep.
I would get so mad at myself thinking how can I get frustrated when I have a healthy child. It was a very hard thing I struggled with, and still do to this day.
I am constantly reminding myself that I am only human and am doing the best I can.
When Evie was first born I struggled with my grief and trying to be present. I remember nursing and rocking Evie with tears but would always be sure to put a smile on my face for her. Even though she was just months old, I didn’t want her to know I was sad.
To this day people always remark that she is such a happy girl – she really does always have a smile on her face, it is just amazing. So I have to hope through all those tears she only saw my smile and felt my love for her.
I will never understand why God took Brielle away from me but giving me Evelyn was truly a miracle, she makes me alive. I can definitely say I would not be where I am today without her in my life!
One word comes to mind for my current struggles, BALANCE! I definitely find it difficult to balance my time between BE love, my daughter, my marriage and my own well being.
I started BE love for two reasons, to honor Brielle and give back to the CCHS foundation as well as have a future that I loved that came with flexibility to be able to spend time with Evelyn.
I wanted to be with her during all of her big life moments as much as I possibly could.
After spending many days at the hospital with Brielle and after experiencing the loss, working a full time corporate job and being away from my Evie just didn’t seem possible for me anymore.
Do you have any advice to share for mothers whose children have been diagnosed with a rare disorder or are ill ?
The best support for me was honestly a facebook group made up of parents who had children with CCHS. I think finding people who are going through, or went through a similar experience can be so helpful! I still follow this community, although at times it is hard to watch as memories become painful. I just feel a sense of connection to these people, like they are part of my family.
When you are a mom with an ill child nothing can prepare you for this, you just have to make every day you have with your child the best it can be.
It can be hard to know what to say or do for a friend who is experiencing loss and grief, do you have any suggestions? What do you wish people said or would still say to you?
There was really nothing anyone could have said to make me feel any different. Just knowing that friends and family were there for me was really all I needed. The messages, visits, calls, letters, emails of “thinking of you” helped me cope for a long time. I didn’t know what I needed but I did know a lot of people were there for me.
I would recommend to continue the support for years after the loss.
We are approaching Brielle’s 4th Birthday and it really doesn’t get easier, all the memories come back leading up to the day she was born. I am grateful for the people who remember this time and reach out to me.
I guess the worst thing to do would be nothing, I remember going back to work and there would be people who said nothing to me like I was just out for a long vacation. I remember getting so angry at those people, but I get it, it is hard for some people to talk about.
Why did you decide to focus on organic and eco-friendly clothing? Where you always into slow fashion? If not, when did this change for you?
I knew right away I wanted to run a children’s clothing boutique with unique items. I wanted to carry items that you couldn’t find at your local department store. I will admit that I was not always into slow fashion or a committed organic lifestyle. I think this is something you gradually evolve into over time.
The more articles I read on organic clothing or slow fashion the more it drives me to spread the awareness. The health benefits, quality and softness of organic clothing is amazing and knowing you are doing something good for the world is something I take pride in.
How do you curate the collection of clothes you carry? They all look wearable yet fashionable! Tell us more.
I want BE love kids to carry fun and modern items that are safe and healthy for kids. A lot of organic clothing is geared towards your baby basics and solid prints so it can be challenging at times to find fun collections and trends.
I love the search of locating these rare items for my store! I love locating unique, small brands and handmade organic clothing from stay at home moms, other countries, and grassroots efforts. I love knowing I am helping other people fulfill their dreams by carrying their items in my store.
What does it mean to you to live well in motherhood?
Living well in motherhood honestly is just doing the best you can one day at a time, being happy and finding balance!