"Who knows why Down syndrome occurs? It can be compared to what happens in nature to a field of clover. Usually, we see 3 leaves on each clover. Once in a while, however, we find a clover that has an extra leaf– making it a four-leaf clover. There is no obvious explanation– all of the clover plants grew in the same soil, were exposed to the same sun and rain, etc. Mother Nature just decided to add an extra leaf to one of the clover in the clover patch. This doesn’t make it better or not as good as the other clover. It just makes it different. Mother nature decided to add another chromosome to that baby’s cells. It doesn’t make the baby better or not as good as the other babies– it just makes him or her different. And if you find one of those babies, you are truly lucky for they are very special babies – who grow in to very special people."
Photo Credit: Dina Godzik
I want you to picture an apartment decked out with the color pink, barbies, music, and the comfiest couches - where snacks seem endless, and there is always a dance party or laugh. Sounds good right?
Well that is exactly what it is like visiting Courtney and Lucy’s apartment. I was just there a few weeks ago to hang out for a while and chat with Courtney during this interview, and I immediately felt welcome by them both. Their house is warm because the two of them live in it together.
Our guests today are two people who I absolutely adore; two people that have definitely touched my soul in a special way, even in the short amount of time that I have known them, and for that I am very grateful! I am also grateful that Courtney was so open to meeting with me to chat about her story and all that she and Lucy have gone through, because I just know how much you all will enjoy it and be inspired by what they have to say.
A Dynamic Duo
A: For those reading who may not know you, who are you? What do you want people to know/what should they know about you before we get started?
C: (Courtney hesitated answering this first question) Well... I’m Lucy’s Mom! Honestly I have such a hard time identifying as anything outside of that. Everything from the time Lucy was born to now has been so fast and so full of big changes, and I feel like sometimes it takes a long time for any Mom to get themselves back if that makes sense!
I started doing hair and make up in 2002, but it had taken me a long time to figure out what I wanted to do. I was always an artist though, and loved design; fashion, make-up etc. At the time that I started, I was working customer service, but I had a good friend of mine who pushed me to try something different, and though I was grateful to have had that experience within a corporate business setting, this pushed me in a different way and I have done it ever since!
A: And for those who unfortunately do not know Lucy yet, who is Lucy and what should people know about her before we get started?
C: Lucy is bright. I actually didn’t know this until after she was born, but Lucy means light. She is like a little force... she is happy, loving, empathetic, and all of that comes so naturally to her. And I would also call her rare; she doesn’t doubt herself, she sees no limitations.
She wakes up every morning, looks in the mirror and says “Wow... I am so beautiful!” Most adults don’t even know how to show themselves that kind of self-love because we are so weathered by the world. We are consumed by that... Lucy is not.
She also has tons of friends! She definitely breaks the ice and always says hello first, and people find it hard to forget her once they have met her. Even as a baby, she would seem to almost seek out the people that looked like they were upset or having a bad day; she would run over to them waving her arms and smiling and it would make them smile. People are truly drawn to her and her personality - they don’t even know they need that until it happens.
Surprise after Surprise
A: How old were you when you became Lucy’s Mom?
C: I was 34.
A: Did you struggle at all medically throughout your pregnancy? Were there any signs prior to Lucy’s birth that spoke to the idea that she would be born with Down Syndrome?
C: I was actually 8 months pregnant when I found out I was pregnant with Lucy. I had suffered from PCOS and Endometriosis for years, so the idea of me getting pregnant at all was almost non-existent, and not getting my period on time was nothing new for me, so at first I didn’t think anything of it.
Lucy was born in February, but the year before that, in March, I had been diagnosed with gall stones. I didn’t have health insurance at the time, so I had to wait a while to get the surgery done to get them removed; over all I was just feeling super sick.
I experienced the opposite of what most women experience! I wasn’t eating much at all, didn't even feel hungry, and I didnt gain any weight. There weren’t many changes to my body at all pregnancy-wise.
So yeah, needless to say there was a lot going on before she was born; surgery, my Mom passed away, I moved to Worcester, and was just exhausted.
When I did find out, I was getting an ultrasound to find out if maybe there was a duct left behind during the surgery I had just had because I had been in so much pain that I literally couldn’t do anything. During the ultrasound in when they found a baby instead!
Finding out I was having a baby was incredible, but also super shocking. I was always told that conceiving was going to be extremely difficult, but it was what I had always wanted. And because I had just lost my Mom, I just felt it was a huge gift. Me and her Dad found out her due date was Valentine’s Day, which was my due date when my Mom was pregnant - it all felt surreal.
A: Did you know she was a girl before she was born, or was her gender a surprise?
C: We did find out she was a girl and I was so excited. Friends and colleagues threw me three surprise baby showers in order for us to get ready for he arrival, and I still had no idea that anything that came after was going to happen.
A: If you don’t mind, give us a brief walk through of what Lucy’s Birthday looked like. When did you go into labor, and what happened once you arrived at the hospital?
C: Tons of women come up with a birth plan before they have their baby, and I know it sounds weird, but I sort of always knew that I would have a C-Section. I just had that gut feeling. Not to mention she was breech, and then flipped head down, and then was back breech before I went into labor; all folded up like a taco with her ankles behind her ears.
I woke up that morning thinking that my water broke, but it ended up not being that in that moment. We were close to her due date though, so I called the doctor and they told me not to rush, but to get in the shower, have some breakfast and get as much sleep and rest as I could before going in at 5pm for the surgery. I did end up falling asleep for like three hours.
Though all the craziness that day, I just remember thinking... my baby is going to be absolutely perfect.
A: How did you find out that Lucy had Down Syndrome? Were you scared?
C: A doctor that I had never met before told me in the middle of my C-Section. I was still cut open and laying out on the table. I felt really robbed of the joy that you feel when your baby is first born, but now I don’t blame the doctor. He was doing his best in that moment, but it still feels like a double edged sword when I get to thinking about it.
I was able to see her for a quick second (see the first photo below) and I remember her cries sounding like our cat Jasmine.
After diagnosis I had so much going on in my head. Not only was I just adjusting to having a baby like all new parents do, I was now also dealing with an overwhelming amount of information. I wouldn’t say I was scared though. Not really.
I didn’t have anyone to talk to who had been through anything like this before, but eventually got connected to a women who lived up state who had a nine year old at the same time. She set me straight and told me that we were going to be okay.
"In the moments after she was born, I remember feeling completely alone. I remember getting on the phone with my friends, Shane and saying “Shane they told me that Lucy has Down syndrome,” and him saying to me “that’s awesome.” He was the first one to really talk with me and lay out all the positives... like the idea that Lucy was never going to grow up to be an asshole, or that she was always going to love me and always be my best friend no matter what, and that the chances I would struggle later with her experimenting with things like drugs, or her feeling hate for me or others was almost non-existent."
Although Lucy was born at a healthy weight (8 pounds), she was losing more weight than normal after birth and was fatiguing and not eating right. We spent eight weeks in the NICU, and during that time they did tests and found out that Lucy had three different heart defect and hypothyroidism on top of other complications.
They were going to send her home at around two weeks in, but then thought she had RSV; she spiked a fever and we found out soon after that she had an extremely rare form of Leukemia. This was really the only moment since finding out her diagnosis that I really thought “how am I going to do this?” It was the most devastating part for me.
Out of 1 in 600 babies, this cancer only affects 10% of those babies, and it just happened to be Lucy on top of everything else. Most of the time it goes undetected, but luckily this type of cancer resolves itself.
At 7 1/2 weeks old, doctors told me that the only way my baby was coming home, was if they put in a feeding tube; that she was failing to thrive, but I don’t believe that was really the case, even now.
I wish now that I had been strong enough or educated enough to go with my gut and fight that a bit more. As her Mom, I knew that her and I could figure feeding out out and that she could do it. I felt like I was arm wrestling with them, and eventually they went through with the procedure. Soon after I brought her home, she weened off of the tube and was eating on her own. A mother’s intuition.
A: How were things after you came home?
C: I definitely suffered through some postpartum depression. I was mentally and physically tired and on top of everything, I believe I was still really grieving my Mom’s passing. Not having her here with me was very hard.
A: What is the number one thing you want people to know about Down Syndrome?
C: One thing would be that I don’t like the term “special needs,” and I believe that anyone that uses it, is using a limiting term. Everyone’s needs are special in their own way, even you and me. Everyone has strengths and weaknesses so we shouldn’t put the label on it. I once had an eye doctor tell me that Lucy had great eyesight “for a girl with down syndrome.” What she really could have said was she had good eyes. Period.
How you deal with parents and children asking questions, or even more so, the ones that don’t ask questions? Do you run into judgment a lot? Do you feel as though people are hesitant to approach you at all?
C: We had a hard time at the store this past weekend honestly. Lucy can’t really sit in a normal shopping cart anymore because she is seven and takes up the whole inside so there is no place to put groceries! We go shopping at Wegman’s though because they actually have special carts made for smaller adults or larger children. It has a full seat cut off in the front so that she can sit and face me. They also have a 5 point harness; she sits lower in it and the chaos of the store like screeching carts, kids yelling, etc. doesn’t bother her as much. It allows for Lucy to be more comfortable when we shop in a big place like that.
With the cart comes a lot of stares and kids asking questions, and in those cases I am glad that they ask, but it is the afterward that is entirely up to their parents.
I know that they are either embarrassed for me, or don’t want us to feel offended, but sometimes I just wish they would let me explain a bit more; maybe I should take the initiative more often, you just always want to be aware of that other parent’s boundaries as well, so I never really know when is a good time vs. not.
It definitely affects me more than it affects Lucy though and I am grateful for that; she is seven years old and I am still trying to figure out which of those conversations with others are worth my time, and which are a lost cause.
A: If a parent did let you explain, what would you say?
C: I want people to know that they don’t have to quiet their kids, and that I am more than happy to explain! I would tell them that it just gets a little loud and a little bit too much for Lucy in the big store, and sitting in the cart makes her feel a lot better and less overstimulated!
A: Where would you send people if they wanted to read more or get more information on Down Syndrome?
C: I usually point people in the direction of medical journals. They are so much more updated now than even back when Lucy was born. The number one geneticist for down syndrome patients actually works at Mass General, and started his practice because his sister has down syndrome. We are so lucky that everything we knew before is being re-written in a way that is educational for everyone who wants to know more, not just parents etc.
I see organizations like DSDN trying to make these changes. I see them working so hard, so I know it is getting out there!
A: How is school for Lucy? Does she have support when she is there?
C: Lucy loves school!
She has been taking the bus since she was three years old! My sister has a son with autism and when I had struggled with the idea, she assured me that getting her on the bus was the best thing I could do for her independence.
It is great because nowadays all children with “special needs” (if we want to use that term) are in full inclusion classes instead of being separated from their peers which used to be the norm in public schools especially.
I do struggle as a parent in working with the school to make sure that Lucy has support though. It can be difficult for her, and she had to repeat kindergarten because they wouldn’t assign someone to work with her academically.
When we started this year I told myself we were NOT doing that again, and I did whatever I could to make sure someone would be there to work with her; I’ll continue to fight for her in that way!
A Giant Support System
A: Where have you found other parents to connect with? Where does your support system live?
C: Down Syndrome Diagnosis Network (DSDN) has been HUGE for me as a Mom. They work on things like gift baskets for new parents and resources for them after they receive their child’s diagnosis, and they put on retreats for the Moms.
It is set up like a “make your own adventure weekend” where you are there to connect with others and they do have programming and amazing keynote speakers, but if it means you need to re-charge by the pool and read in the sun for 4 days straight and not attend those, you can do that too. It is whatever re-charge means for you!
Another part of what they do is raising money to contribute to scholarships for Mom’s who can’t afford to come otherwise. This allows everyone to have the experience which is incredible. The first time I went I think I cried for three weeks straight! I was so inspired.
It has become a place of sanctuary for all of us moms, really. You make friends
with people who otherwise, you never would think you would be friends with!
Last year. our group alone raised over $600,000. While you raise funds, part of that money at a certain level goes toward your trip to the retreat! This means everything.
Fun Fact: There is actually a Courtney Mourse with a daughter named Lucy who also has down syndrome, that live in NY!
A: Are there groups like this for Lucy where she gets to play with other kids her age that also have down syndrome?
C: There is! The Down Syndrome Congress of Massachusetts also does a lot for the community; things like buddy walks, and play groups that allow her to socialize with other kids! They also host parents nights.
A: Does Lucy understand what down syndrome means?
C: I dont think so, no.
The Future is Bright
A: What does the future look like for you and your daughter?
C: I mean I picture her living with me for forever, but on the other hand I feel like she is far to independent for that. She reminds me most of myself in that sense. I feel like she will eventually want to go off on her own and give it a try.
I also know that eventually we will start asking me the harder questions like why she is different.
A: How prepared do you feel to have those conversations with her in the present?
C: I feel pretty prepared.
A: Lucy takes dance classes right? Does she like going?
C: She does! She does tap and ballet. They have a class for other kids with Down syndrome at the studio we go to, and that was where we started, but most of the girls in that class are quite a bit older and the teacher thought Lucy’s skills would be a perfect match for a normal class with other girls her age, so she does that now instead.
Photo Credit: Dina Godzik
A: What is one of your favorite parts about being Lucy’s Mom?
C: I love when she comes into my room in the morning, hugs my face with her hands and tells me that she missed me. We also love to dance together, do each others hair and makeup, and shop... obviously!
A: What characteristics do you see in Lucy that you also see in yourself? Does she remind you of YOU in any ways?
C: She definitely has my personality. She has some spunk in her, and she always wants to have fun doing everything. Her fashion sense too. Definitely me.
A: What has Lucy taught you since she came into your life?
C: Oh god, I am a totally different person. I view the world completely different now. Typical Mom things that I thought I would be worried about, some haven’t even crossed my mind.
As you can see, I have also been able to full-fill my Barbie dreams, just having a girl in general!
Overall, I just feel lucky. For all the things that would have made me crazy...I am grateful for not knowing what that feels like. I know I would have spent so much time worrying about things that aren’t even important, and that is all because I have her.
"In most senses I feel like I was preparing to be her Mom my whole life without even knowing."
When I was little, we lived in Colorado, and I used to find pocket fulls of four leaf clovers everywhere! Even after my Mom passed away, the first time I ever visited her grave I found four leaf clovers. They even grow outside of my house now and I always keep several in my wallet.
I remember once walking around at Elm Park with Cheryl (who was our occupational therapist for Lucy) on the anniversary of my Mom’s death, and we walked past a picnic table where a group of people with Down syndrome were eating lunch. We walked over and said hi to them and not five minutes later I bent down and picked up a four leaf clover! What are the chances?! I knew it was a sign that my Mom was with us.
Everyone wants to find that clover, and most people struggle to or never do... but I have it all.
It was incredible to chat with Courtney, and to learn from her, and to get a glimpse into what every day looks like for her and her daughter. I honestly don’t think there could have been a better match for either of them; they were meant for each other 100%.
It was also awesome to spend some time with Lucy; to learn about what she loves to eat for snacks, to listen to her sing, to watch her dance with her shadow, and to see her play out scenes with her barbies. Within the hour she had told me about her dance classes, told me she loved me, told me I was beautiful and asked if I wanted to stay and play for a while. How can you say no?! I left with heart smiles.
I urge you all to follow the links that Courtney has given me if you want to learn more about DSDN and her fundraising, as well as other organizations that are doing their part to raise money and to raise more awareness and acceptance for families like Courtney and Lucy! It is SO important, and truly, you will do nothing but gain from spending time with Lucy and all of the other lucky four leaf clovers out there! There is no doubt in my mind!
Massachusetts Down Syndrome Congress: https://mdsc.org/?fbclid=IwAR3bXPSAYB_zey6fNWghgYRlLhCLIRjF-18wdOWiMeqkBYmRd6lgTbq5a3Q
Down Syndrome Diagnosis Network: https://www.dsdiagnosisnetwork.org/?fbclid=IwAR2Xj5AW_xDUqLXgeJNcxLiZQKxHZzT175k6hoqmockBk3fy8YTP46unAr4
In the words of my girl Lucy, “see you later hunny buns!” I’ll talk to you all later!