Who are you? I’m Mary, 37. I’ve been married to Phil, 35, for 11 years and we live in Malta with our two children and our dog. Ella is 6 and in 1st grade, Evan is 2 and in “baby preschool” (as Ella calls it), and Jonah, the wonder-dog, is 17! Who are your kids? When Ella was born, we had a surprise diagnosis at birth of cleft lip and palate and, 3 days later, of a congenital heart defect. Her clefts were repaired in 3 surgeries by the time she turned one. Her heart defect required regular visits to a pediatric cardiologist but, overall, she developed “typically”, meeting all of her milestones on time or early.
She started speech therapy at 10 months old and still receives speech services through the school district. She also received special instruction services once she entered preschool to help with facilitating social interactions. Both her speech therapist and special instructor now work with her brother! We found out that Ella would need open heart surgery to repair her defect when she was 4 years old, just a month after her brother was diagnosed with Down syndrome. Talk about putting things into perspective! She had that surgery at NYU Medical Center when she was 4.5 and, 6 weeks later, started kindergarten on time with her class! Add in a couple of surgeries for ear tubes, and she’s had 6 surgeries in 6 years. She inspires me every single day and is truly my hero. A few months ago, she was also diagnosed with ADHD – the diagnosis was not a surprise, but it is one more thing to keep us on our toes, that’s for sure!
When I was pregnant with Evan, my husband and I frequently joked about whether we'd have too much time on our hands with this "healthy" child. When he was 4 months old, we found out that Evan had torticollis (basically a weak neck), so he started physical therapy. And he had some issues with silent reflux, so there were specialists for that. So much for this "time on our hands"! He started in the Early Intervention program at 6 months old. They, as a matter of course, made an appointment for him with a developmental pediatrician. He was concerned and sent us for blood work. The blood work came back in just over a week and, at almost 10 months old, he was diagnosed with Down syndrome. Believe me when I say, Down syndrome hadn’t even been on our radar! Nobody, including his pediatrician at the time or the specialists he had seen, had even suggested it as a possibility. I had had very little experience with Down syndrome prior to his diagnosis and I was scared and, yes, I grieved. But the wonderful thing about his late diagnosis was that, when I was done feeling sorry for myself, I had this awesome little boy looking up at me as if to say “why are you crying, mommy? Nothing’s changed!” For sure, I had already known and loved Evan for 10 months – I knew his personality and his spirit and exactly what he was capable of. Today, he is a running, climbing, funny, into everything, very demanding, typical 2 year old!
I’m not a huge phrase of the phrase “special needs” because don’t all children have their own special needs? I won’t say that parenting my kids is “challenging” because I really don’t feel that it is. I will say that I feel an extra responsibility to set things up for them to be successful – whether that be through IEP meetings, or trips to out of town specialists (Ella sees specialists in NYC and Evan sees some in Boston), or just through arranging more play dates and encouraging those friendships. But, more importantly, life with my two children – whatever their needs – is, much more often than not, just plain FUN!
What is their relationship like? Amazing. Very typical. They do fight, especially now that Evan is 2 and getting in to all of Ella’s stuff. But, she just adores him and he absolutely thinks the sun rises and sets with her. The day he was diagnosed, we sat down with Ella and explained to her that Evan had something called Down syndrome and that it just meant that he might learn to do things like talk and walk slower than other children, but that he absolutely WOULD be able to do anything that other children do eventually. We told her that she would be his biggest teacher … and she takes that responsibility very seriously!
What do you want people to know about Down syndrome? Most importantly, I want people to know that it is NOT scary or something to be sad about! Two years ago, I had no clue. If I had received a prenatal diagnosis, I would have been devastated. But, the reality is, I was raising a beautiful baby boy for almost 10 months and nobody even suspected that he had Down syndrome. It was just that “normal”. I am truly nobody special and raising Evan is definitely not a challenge – it’s a joy and a privilege.
And the future is so bright! Thanks to advances in Early Intervention and, perhaps more importantly, higher expectations, children with Down syndrome are growing up today included in regular ed classrooms, graduating high school, going to college, having jobs, living independently, getting married, etc, etc.
When you decide to have children, you’re always taking chances … never knowing what the future will bring. I can say with confidence that, for my children, the sky is truly the limit!
Do you have time for yourself? What do you do during that time? Not really … but I’m ok with that! I guess the biggest thing I do when I have “me” time is take a nap! Oh, wait, I do have about 90 minutes of “me” time when Evan is in school now. On Tuesdays, I volunteer with a choir for people with memory impairments and their care partners called Joytones. And on Thursdays, I usually wind up wandering aimlessly around Target … with no kids? Pure bliss!
What advice would you give to other moms about how to balance work and life? I think that women just need to be honest with themselves and do what’s best for them and their families. When I was a working mom, I was SO lucky because I did something that I loved to do and was passionate about … still am! Before I had kids, you couldn’t hand me enough money to make me stop working. After Ella was born, for me, that all changed. I still loved my work and was as dedicated as they come, but my heart was at home. It wasn’t until after Evan was born and, 10 months later, diagnosed with Down syndrome that the decision was made for me to stay home. I’m also lucky in that I’ve been able to start my own business, Memory Notes, which provides music therapy services to people living with Alzheimer’s. I work a couple of hours a week doing that and it’s truly the best of both worlds.
Do you ever wonder how other women manage the juggle? Do you think people are open about it? Not really … I mean, everyone is different. In my experience, people have been open about it – either needing to work (for financial or personal reasons), wanting to be home, etc. There’s no “shame” in any of it!
What do you find tricky about your current set-up/schedule? What would you change if you could? Juggling all of Evan’s therapies, for sure! We truly have the best of the best, and Saratoga County Early Intervention has been amazing to us since my daughter started utilizing them 5 years ago. But four therapists providing nine hours a week can get a bit chaotic sometimes! Luckily, our team is amazing and understanding … we all just go with the flow. And, most importantly, Evan absolutely ADORES them. And they love him right back. I’ve always said that you can never go wrong with having more people around to love your kid.
If I could change one thing, it would probably be that he wouldn’t need so many therapies, but then we wouldn’t have these amazing people in our lives. Developmentally, he’s also pretty on par with your average 2 year old, so we’re all doing something right!
What do you like best about your current set-up/schedule? I LOVE that I’m able to be home with Evan most of the time. And that I’m able to be involved with Ella’s school – I didn’t get this time with her when she was Evan’s age, so I try to make up for it now.
What is your typical schedule like during the week? None of us are “morning people”. Evan is usually the first one up at around 7:00. My husband or I will go get him while the other one showers. And then we tend to Ella – we’re usually getting her dressed while she’s still asleep! Once we’re all downstairs, we try to get some breakfast in the kids. Hubby leaves for work by 8:15 and Ella’s at the bus stop by 8:25 (hopefully!) Once she’s safely on the bus, Evan and I come back inside … I usually bribe him with Barney (his favorite!) while I try to pick up what’s left of the tornado that comes through my house every morning. Ella gets home from school at 3:45 – when she gets home, we usually have a snack and hang out until it’s time to start making dinner. Daddy arrives around 6:30 – then it’s dinner, homework, playtime, and winding down for the day. Both kids are usually in bed (and asleep) between 9:00-10:00. Between the hours of 8:30-3:30, our days are all busy – but different! On Mondays, Evan has therapies (special instruction and physical therapy) from 10:30-12:30. He naps daily from about 1:00-3:00 and then has therapy again from 3:30-4:00 (speech therapy). My mother usually comes over while Evan is napping on Mondays so that I can slip away and volunteer in Ella’s classroom for the afternoon. On Tuesdays and Thursday mornings, Evan attends Academy Nursery School. It’s a program for typical developing 2 year olds, and he absolutely loves it! On Tuesday, he also has special instruction in the evening. On Wednesday, we go to a library story time in the morning and he has speech therapy in the afternoon. And on Friday, he has therapies from 9:00-12:30 (special instruction, occupational therapy, and physical therapy). I also work a couple hours a week as a music therapist, providing services to people living with Alzheimer’s in care facilities or in their homes. When I work, my mother comes over to watch Evan and I’m always home in time to get Ella off the bus. Perfect!
If you had an extra hour in the day you would spend it…? Sleeping, no doubt. I try to cram that extra hour in every morning but it never works!
Do you find it hard or difficult at all to stay connected to friends/people in your life now that you have kids? Do you find there is any gap or gulf in between you and the friends/people in your life that don’t have kids? Any tips on how to stay connected to those people? Facebook. I keep connected to so many people I might have otherwise lost touch with because of facebook. A fair number of my friends don’t have kids of their own, but they’re still interested in kids, particularly mine, which is a good thing! Not that I need to be talking about my kids non stop, but if you have *no* interest in my children, then it might be hard to stay connected. I’ve had that happen too and, when it does, I just have to move on.
Is there anything you find yourself doing as a parent that you swore you would never do before you had kids? Gaining weight. I swore it wouldn’t happen to me, but I gained more than I’d like to admit with each pregnancy. I’ve vowed to get healthy again, to set a good example for them. I’m on my way!
What is one thing you’ve realized/learned about motherhood that no one ever told you before you had kids? Gosh, probably how deeply you can love another person. I mean, people tell you, but you don’t really “get it” until you’re a mom yourself. Even now, 6 years into motherhood, I still get tears in my eyes watching my incredible children do the incredible things they do.
Many thanks to Mary for taking part in the My Mom Life Series. For more from other moms in the series, click here. If you would like to take part, email me at firstname.lastname@example.org. xoxo