When Jennifer reached out to me about being featured in Living With Kids, she had such a compelling story to tell. Jennifer’s youngest has Spina Bifida and her family had the unique experience of having someone hold a fundraiser in their honor, to help them get a service dog for their son, to help manage his frequent seizures. It’s so great to be reminded that there is goodness and kindness in the world when everything else feels so difficult.

Jennifer also has a lovely home in Connecticut that she graciously wanted to share, and I think you’re really going to love taking a peek. Welcome, Jennifer!

I am a lucky girl living with 3 handsome men……..my husband Rich and our two boys. I also have a little bit of girl power in the form of our fluffy feline Ebby. Rich and I met as teenagers. Our introduction was completely sweet and uncomplicated. One of our mutual friends was coming to my house and Rich tagged along. All I did to meet my soul mate was literally open my front door. If there is a such thing as love at first sight it was so for me.  I told my mother that very night I was going to marry him. She, of course, laughed at me! He claims now (26 years later) that he also knew that he loved me. What I remember is a lot of making up and breaking up very dramatically in the way only teenagers can do. 

We got back together for good in college and got married soon after. We’ve been married for 16 years. I could never have imagined then all we would go through together. Things that could and should cause division in a marriage, and we have emerged even stronger.

We both have a very bizarre sense of humor that keeps us laughing. I remember being in the hospital and Rich helping clean my bed pan. He looked at me and said “I thought we would be in our 80s before I did this”. That’s my Romeo and I would have it no other way. 

I work as a School Psychologist and Rich works in the Finance department in a Union. I love my job. Nevertheless, it can be emotionally draining. Rich is one of those people who could be happy doing just about anything; although I think back in his college football days, knowing he’d be sitting in an office for work would be quite surprising. 

At 8 years old Trey reminds me of a puppy whose paws are a bit too big for his body. He has somehow managed to be sweet and wonderfully naïve despite a lot of upheaval in his young life (more on that later). He still likes to sit in my lap, rub my arm and put his hand on my cheek. Trey talks like a mini scientist and rather than asking for a drink he may say something like “I’d like a drink of water. Don’t worry I’m not dehydrated, just thirsty.” Or instead of saying we’ll be there soon he’ll say, “We’re soon going to arrive.”

Andrew has been through more in his 5 years on this earth than most have in a lifetime. It has contributed to him being smart, observant, resilient, fiery, independent and wise beyond his years. He really is an old soul.   

December 9, 2014 is a date that I don’t just remember, I feel in my heart. It’s the date all of my little families’ lives changed. I went to my 20 week ultrasound and learned that Andrew had myelomeningocele, the most severe form of Spina Bifida. I could still visualize the bright light as I laid on the bed, the ultrasound technician’s sudden change in tone as she began to look more intently at her screen, the smell of the ultrasound jelly on my belly and more than anything else the look in my husband’s eyes as he held my hand and listened when the Doctor came in and told us something was very wrong. So began the adventure of a lifetime. We temporarily left our condo in Connecticut behind with our 2 year old in tow, to stay with my parents in New Jersey, to be near Children’s Hospital of Philadelphia (CHOP) for Andrew’s birth.   

After going into pre term labor at 28 weeks I was put on strict bed rest and CHOP wanted us to move closer. For 4 months we lived in the hospital, hotels and short-term rentals. After Andrew’s three surgeries at CHOP we made it back to Connecticut. It was 8 months later and it was surreal coming home when everyone and everything were the same but we had changed forever. When Andrew was 2.5 years old he had his first seizure. He was well controlled for about a year but the seizure activity has become more frequent. Now in 2020 he is on 4 anticonvulsant medications and goes through good and bad periods. All of this has given us the gift of perspective. We try not to sweat the small stuff and I remind myself of this every day if I start to focus on the negative. Andrew has grown into such an amazing, charming little boy and has been a blessing to this family. Though some days are hard, it makes the good days that much better. 

We live in Trumbull, Connecticut in a neighborhood called Daniels Farm. Our ranch is unusual in a sea of center hall colonials. Our neighborhood has the small-town New England charm that I love. Although Trumbull is not a small town, its neighborhoods feel very small and intimate. Our block is an idyllic, tree lined suburban street where neighbors know each other and at any given time neighborhood kids are riding by on their bikes. 

Our house is set back from the street on a hill and we have about one acre of land with woods in our backyard. Coming from Manhattan, maintaining the land was overwhelming! We traded in worry about roaches for worry about ticks. 

The school system in Trumbull is excellent and draws a lot of young families. Rich works in Manhattan and when Trey was starting Preschool we began looking for a town to really settle down. We were priced out of what they call the “Gold Coast” of Fairfield County, CT and decided to sacrifice commuting convenience to prioritize parks and great schools. 

Although Trumbull’s home prices are higher than many of its neighboring towns and the taxes are high, it is still affordable by the standards we were used to in Manhattan! The average home is under $500,000. 

The town is a bit sleepy in terms of restaurants and nightlife, but is a close enough drive to these things. We love going to Plasko’s Farm next to the kids school to get homemade ice cream, and going through the corn maze in the fall. We go almost every weekend to the school parking lot and meet a bunch of friends for bike rides. The friends we’ve made here have become family.     

We had a lot of priorities for a home to meet Andrew’s needs. It needed to be all on one level including minimal stairs to the entrances. This was no easy feat. The market at the time was and continues to be hot — multiple bids on houses the first day on the market. 

By the time we found this house we had already bid on 4 other homes. Each time I was so upset thinking we would never find what we needed. The morning this house went on sale it didn’t even have a picture up yet. I drove past on my way to work and fell in love before we even went inside.

The house was built in the 70s and had all the accompanying 70s features — laminate floors in the kitchen, an avocado green bathroom, dark brown wood paneling and a red brick fireplace in the great room but none of that mattered. We knew we would not have the money to do any sort of renovation for many years to come but I was smitten.

It’s amazing what paint and some imagination can do. The bigger things can wait and I couldn’t be happier the other houses fell through. Since we moved in we have had 3 letters in our mailbox from people looking to buy in the area asking if we would consider selling. The answer is a resounding “no”. I could honestly say if I were to win the lottery tomorrow I would do all the projects we’re saving up for but I would stay right here.

Because we left for those 8 months for Andrew’s birth I tease that we left in a car and returned in a UHaul. My entire life I’ve been a minimalist – long before it became in fashion. My mother tells stories how as a kid, I would round up garbage bags full of stuff in my room and leave them outside my door insisting that she take them away because I felt too crowded. By the time we moved to this house we had way too much stuff for my liking. It took months but I completed the KonMari method and have felt so much lighter and calmer because of it. Now each area has a purpose. 

I have a reading corner and a yoga corner all set when the mood strikes me. The yoga area also doubles as Andrew’s Physical Therapy spot. I’m surrounded by things that are personalized to this house such as custom saloon doors to the playroom we had made, a watercolor painting of our family and the vintage wallpaper silhouettes Rich painstakingly removed from the wall of Trey’s first nursery. 

I love decorating but don’t let it overwhelm me. I think if you surround yourself with the things you truly love there’s no going wrong (my love for Foxes and Harry Potter are in the forefront). I think functionality is so important when decorating with kids but you don’t have to compromise on aesthetics.   

As Andrew’s seizure activity began to increase I joined an online Epilepsy support group. I immediately felt a connection to a young woman named Paige. The group consisted of both parents of children with Epilepsy and those with Epilepsy themselves. During one of those meetings another parent discussed his daughter’s service dog.

Because Andrew’s seizures are at night it’s not safe for him to sleep on his own. In a recent appointment with his Neurologist we discussed how Andrew was getting older and how we want him to become more independent with both his mobility and being able to sleep on his own. The Neurologist had suggested a service dog but they are not covered by insurance and it just seemed so out of reach for us. 

A week later I received a phone call from Paige. She explained that she wanted to climb Mount Washington in Andrew’s honor to raise funds for a service dog. 

What came next was a complete whirlwind. We put together a campaign video and I was so nervous we wouldn’t raise enough money and how disappointing that would be. When word got out we were on the news a day later. We raised the entire amount in 3 days time. This affected us on so many levels. It solidified a lifelong friendship with an Angel named Paige. It gave our neighbors who wanted to help for years a way to do so and they were thankful for it. At times our situation feels isolating. It made us realize that we had an entire community behind us further demonstrating Trumbull is where we were meant to be.

Prior to the pandemic we were never home. Rich and I both worked full time and between physical therapy, karate, baseball, baseball clinic, soccer and friends we were completely over-scheduled. The initial months of quarantine were simultaneously refreshing and beyond boring. 

What I took away from it is that I need balance in my life. While I don’t love sitting home we have to be more selective in our activities. Eating dinner while driving from one activity to another 4 out of 5 nights per week is beneficial for no one. 

As of a few weeks ago I am back at work full time. It’s nice to have a schedule again but bringing home the virus is a big concern. The boys are back at school 2 days a week and doing virtual learning the other 3. Rich is working from home the 3 days the boys are home and with the help of a babysitter/tutor trying to teach both boys. To be honest, I think I have the easier job and feel a bit guilty! 

Being home so much has made me appreciate the house even more. We made some small changes like setting up a desk area in the playroom for Andrew to do his work and put a desk in Trey’s room for his virtual learning set up. Otherwise the house has served us well dealing with our “new normal.” 

Being home so much with the boys I have learned that Trey can talk about Legend of Zelda, Breath of the Wild for approximately 2 days straight and that Andrew is a bit diabolical and laughs really hard when someone falls or drops something. I also learned I’m not as patient as I thought I was and it’s something I really have to work on. Their entire demeanor changes based on how we as parents conduct ourselves and we’re the ones who need to set the example. This is certainly easier said than done but it’s a work in progress. 

I hope the boys remember all of us piling into bed on a Saturday morning for a snuggle. I hope they remember pulling our chairs around the fireplace and drinking hot chocolate in the winter. I hope they remember me singing (very poorly) in the car and all of our laughing fits. I hope they know that they are and will always be our number one priorities, even above ourselves. I hope they forget the times I ask them to watch some television so I could get chores done and that they believe me when I say sorry because I know I was wrong. 

My favorite thing about living with my kids is that they teach me as much as I teach them. In so many ways for better or for worse they’re like little mirrors reflecting the good and the bad. It’s an inspiration to try harder.

I already miss those late nights when they were babies, snuggling and feeling like we were the only people in the world. I wish there was fairy dust somewhere to keep them little forever. 

I wish someone had told me that the concept of normality is nonsense  Normal for us is completely different than for someone else. This idea has also helped in how I set up my home. Our families’ priorities helped guide how the house is set up. For example, we sacrificed an eat in kitchen to create the “command center” and the front room became the playroom.  I don’t like a lot of toys in the bedroom because we’re all troubled sleepers.  Who wants to be normal anyway?  Our house is full of love and that’s what matters to me. 

——

Thank you, Jennifer! I loved peeking around this home. You really could tell that someone lives here and that they had made the house work for them. The spaces all felt warm, and intimate and personal. I appreciate the idea of not getting hung up on what a space is “supposed” to be and making it into whatever makes sense for your family.

I also really loved what Jennifer said about “normalcy.” There is so much talk lately of when things will get “back to normal” or what the “new normal” will look like. And it’s a good reminder that normal doesn’t really mean anything. Our lives get to be what we make them to be, and they don’t have to fit anyone else’s ideas or mold. There is some real comfort in that. Normal for a family is whatever they choose it to be.

What’s “normal” in your family that might not seem normal in another family? What changes and adaptations have you made to make things work for your family as you deal with a pandemic?

SOURCES

Fox bowl 

Fox wallpaper 

Playgroom animal hooks 

Ottoman 

Living room chairs


If you want to see the video that helped Jennifer get a service dog, check it out here. Living With Kids is edited by Josh Bingham — you can follow him on Instagram too.

Would you like to share your home in our Living With Kids series? It’s lots of fun, I promise! (And we are always looking for more diversity in the families we feature here. Single parents, non-traditional parents, families of color, LGBT parents, multi-generational families. Reach out! We’d love to hear your stories!!) Email us at features@designmom.com