Our journey has been filled with many detours. Just as it seems the road is clear and you’re moving along an unexpected detour pops up right in front of you. We have faced many detours along the way and no matter how hard they were to navigate we always made it through.

This new detour; the breast cancer detour, has been a hard one. Originally I was going to say the hardest but thinking back it really isn’t. The hardest was the detour that took us down the road of seizures. My daughter was 11 months old when the first one occurred. At the time I honestly thought my baby girl had died in my arms. It was a day I’ll never forget. Many more seizures were to follow in the months and years ahead but no matter how bad they were we kept moving ahead and made it through each one.

My current battle with breast cancer has been an especially difficult detour for my daughter. Routines and days that were once predictable are no longer. Instead there are doctors appointments, infusions, and many nights when Mom goes to bed too early.

At first there was the diagnosis and finding the right words to explain it. Then there was the surgery and the fear of the unknown. Next came the chemo and the loss of my hair. When I first told her that I was going to have to take medicine that was going to make my hair fall out she screamed in my face and said she couldn’t touch me or come near me. We left it like that. A few days later I told her I was going to the hairdresser to get a new haircut. I came home with a shaved head and a wig. She never knew. The wig however was becoming very uncomfortable to wear until I was able to take it off when she went to bed. Gradually I started wearing beanies over the wig. Then one day I finally told her my hair had fallen out and I was wearing a wig. She accepted the truth and I am now free to wear the beanie hats at home. She refuses however to see what’s underneath.

Our newest hurdle to overcome is empathy. My daughter becomes very jealous when someone asks me, not her, how I’m doing or gives me a card or gift, and not her. Up until now she has always been the one who came first, the one people catered to. I’m sure though this too she will eventually accept. Changes don’t come easy to her. Changes may have slowed us down but they never stopped us from moving ahead.

My daughter’s obsession is Disney princesses. As we make our way around our newest detour I’m beginning to understand more why the obsession. First, Disney princesses are always predictable. Second, they always make it through in the end. She knows her princesses and her princess parties will always be there. It doesn’t matter if she’s facing good days or bad they will always be consistent.

As I make my way through this cancer battle I myself have become connected to one of these princesses. It’s hard to imagine that a grown woman is relating to a make believe princess to make it through some days. My princess is Princess Anna (now Queen Anna) from the movie Frozen. Anna symbolizes a woman of courage that believes in hope, optimism, and doing the next right thing. These are the beliefs enabling me to keep moving forward.

Never doubt your child’s interests. Embrace them. Understand why that’s their focus. Take the happiness they gain from it and carry it with you. Learn how they keep moving forward. You never know when you’ll be needing to do the next right thing.

This is a story about my diagnosis; not hers. In May of 2023 I was diagnosed with breast cancer; a diagnosis that would quickly disrupt the predictability that we always try so hard to keep. At the same time however, it would deepen even further our princess connections.

After I took hold of my diagnosis I waited for the right day to tell my daughter. I expected her to break down in tears and become hysterical. Instead she paused for a minute and asked if I would still be able to take her to princess events. I promised her that she would get there if not by me but by someone else. That was that and she went on with her day. As for myself it was rather hard to take in. Here I was with cancer roaming inside my body and my child didn’t understand.

The next few months were full of doctors appointments, stress and fear. A decision to have a double mastectomy did not come lightly. My daughter held it together well during this time as well as the day of my surgery. Her daily schedule had suddenly become different than what she was used to but she was content to be home while I recovered. Just recently it finally all caught up to her and she realized this was going to be the new normal and she did not like it one bit. She spent three days crying in her bedroom refusing to eat. It was with the help of our village of princesses and princess parties that she was able to come out of her funk. Through all the mixed up crazy days that were happening at home the princess entertainment companies remained consistent and she clung to them.

My daughter doesn’t realize that no matter what changes happen or where her journey takes her she has a village of family, friends and princesses behind her. I am however, overwhelmed with the amount of support our village has given us these past few months. In particular I’m taken aback at the special education program that Kelsey aged out of a few years ago. Although she is no longer a student in “the system”, “the system” and the teachers, staff and therapists that guided us on our journey for many many years still to this day remain connected to our family. All of those people that worked with my daughter and that we sat around the table with for endless IEP meetings somewhere along the line became deeply connected to us. We are fortunate to still include them in our village. I really can’t say that enough.

As I continue to fight this cancer I find it only fitting to follow the wisdom and courage of a Disney princess. My daughter has been obsessed with the characters in the Frozen Movie since it came out several years ago. The two princesses in the movie, Elsa and Anna, are discussed daily in our house. In one scene as Princess Anna ventures into the unknown she convinces herself not to give up and “do the next right thing.” I’m going to use that line, “do the next right thing” as a self reminder to keep moving forward day after day. My surgery is over but there is more to be done to win this battle. Chemotherapy is the next right thing to do and that is just what I’ll do.

My daughter’s journey has been long. For years we searched to find the right school, the right program, the right medications. I’ve said this before and I’ll say it again; when she was really little it was like hell on earth. Over time, over years it got better. Eventually we did find the right schools, programs, incredible teachers, therapists, doctors, and village of people to carry her through.

Today she is on a journey I never could have imagined; her journey has become mine. Turning 22 and aging out of the public school system at the onset of COVID brought her journey to a dead end. After sitting in her bedroom for 2 years, with the help of some very amazing people, I figured a way to continue her journey and get not only her but others in her same situation back out into the community. We created our own coffee cart business. Chapters Coffee Carts is a nonprofit business located in the Medford Public Library with a mission to set up supported worksites for individuals with disabilities. My daughter and her coworkers are provided a paycheck, meaningful work experience and most importantly a place in the community.

My days, my journey, is now filled with not only accommodating my daughter’s needs but our other staff as well. Between accommodating each of their specific individual needs, ordering supplies, searching out grants, advertising, as well as juggling my family at home I’ve quickly come to realize that this new journey of mine is not going to be easy. Like every new journey some days leave me frazzled and exhausted. Like my daughter’s journey as she was just starting out, this is an unfamiliar road; a road that I need to learn to navigate with all of its twists and turns.

Raising a daughter with special needs has taught me many things; optimism, patience, and gratitude to name a few. At the start of my new journey, my journey as a nonprofit business owner, I’m fortunate to be able to take the things I’ve learned with me. Optimism f dictates me to forge ahead day after day. I know this road isn’t going to be an easy one but I’m sure it will lead to many great things along the way. Patience enables me to never give up, to hold on and wait to become well established. Gratitude leads me to wake up every day thankful for the support that so many people have given us every step of the way. My daughter’s next part of her journey, my new journey, is going to be a great ride that we’ll travel together.

Six months later and it’s still hard to believe. Never would I have thought this is where my daughter’s journey would take us. We’re now considered small business owners and with it comes every triumph, struggle, worry, and happiness you can imagine.

What sets us apart from other businesses is that our employees all have disabilities, different needs, and unique talents that we diligently try to accommodate for so that they can be successful. Let me honestly say however, that as the “manager in charge” it is exhausting. My staff have become my family and I’ll support each of them all that I can. If you are reading this and have a child with a disability you know how hard it is. I have six; six amazing individuals to care for. Six that keep me awake some nights trying to figure out how to ensure their success. Six amazing individuals that are all so different but share one thing in common; they all thrive being a part of their community.

I’ve witnessed it firsthand not only with my daughter but with the rest of our staff as well; being actively involved in the community is a great gift. Oftentimes we take for granted the priveledge of being able to get up in the morning and go to work. To interact with others, to feel appreciated, to be involved is something that has made a huge impact on the lives of all of our staff.

Most of us by now are familiar with the phrase, “it takes a village.” I personally have been able to see for myself these past six months the impact that a village can make. Chapters Coffee Carts honestly would not be able to exist without you, our village. To everyone that has contributed to our Amazon wishlists, thank you, you’ve made a difference. To our “regular” customers that stop by our cart, thank you, you’ve made a difference. To our passerby’s that stop by and drop something in our donation box, thank you, you’ve made a difference. To our social media followers always sending us positive thoughts, thank you, you’ve made a difference. To our donors, your contributions have made a difference, thank you. Finally, to the community of Medford, supporting us, embracing us and welcoming us to be actively involved in our own hometown, thank you, you’ve made a difference.

These past six months have been like none other. I’ve never worked so hard in my life. I’m exhausted but determined to make this work. Seeing the difference it has made not only in my daughter’s life but in the live’s of our other staff make me determined to push ahead. Times are tough for us all but as a small business owner just getting started, it’s to say the least, beyond challenging. “Never ever give up,” is what I have told myself throughout the journey with my daughter. No matter how hard things got we kept pushing for what we believed in. Our journey has now led us to our own company, Chapters Coffee Carts, and after being open for six months we’re determined to keep moving ahead. These next six months are going to be even more amazing; just wait and see.

By the time my daughter was about to turn 22 and age out of the public school system I had become confident in navigating the special education maze and finally realized what our number one priority was. After many many years of grief, anger, and frustration I came to realize that happiness for my daughter was all that I wanted. The vision statement on her last IEP said, “To truly be successful one must be happy. As Kelsey transitions into adulthood we would like to provide a path for her on which we think she will obtain that happiness. Attaining happiness however, is something different for all of us and something we each must achieve independently and at our own will.”
Kelsey was supposed to “age out” and transition into an adult program that we thought she would enjoy in May of 2020. The COVID pandemic shut everything down two months earlier in March of 2020. My daughter never was able to make the transition that we had carefully planned and more than 2 years later still hasn’t been able to attend a program “in person”. While many of us have been able to move on, our young adults with disabilities are still suffering greatly. There are not enough day programs out there and the ones operating are understaffed causing our children to sit at home with no where to go. “Transitioning into adulthood” in Massachusetts is at least in my opinion, and I’ll be kind, unacceptable.

In the meantime I was able to take advantage of an opportunity that would benefit not only my daughter but other young adults with disabilities as well. Our city was building a new $300 million+ library with a cafe space. I knew that the cafe in our new library was an ideal location for some of our young adults with disabilities in the community to be able to bring their unique talents and gifts to work every day. With enough finances, determination, and connections we created a non profit business to do just that. Chapters Coffee Carts was created with a mission to set up supported worksites for individuals with disabilities( learn more about us at www. Chapterscoffeecarts.com). It took us nearly two years and hundreds upon hundreds of hours of paperwork but we did it! Our first cart (Chapter One) has been set up in the new library in Medford MA and we currently have employed 6 individuals(my daughter included).

Kelsey comes with me every day to the library.
We have the same routine in the morning and follow the same routines throughout the day. At last she is out of the house and interacting with other people in the community. On her final Transition Planning Form under the Post- Secondary Vision a part reads, “Kelsey’s school Team would like to see Kelsey as an active and contributing member of society. The Team would like to see Kelsey possess the skills and confidence that will enable her to access and participate in the local community.” Finally that has begun to happen and she has been able to make that “transition into adulthood” and begin the next phase of her journey. A transition we never planned but one that all the same makes her happy. Out of the blue she recently told me that she doesn’t want to go to a program, she is happy where she is working at the coffee cart.

At last my daughter has “transitioned.” A transition none of us could have imagined when we began the process so many years ago. A path we created, a path that she chooses to follow and makes her happy. She is an active and contributing member of society and ready to continue the first chapter of her journey through adulthood. I don’t know where the second and third chapters will take her but for now, this first chapter, is going to be a good one.

Finally after all of these years she belongs. Since the time my daughter started kindergarten we could never find a program where she truly fit. Every program out there was either too high for her or too low. I often explain that when my daughter started school the special education classrooms were on one side of the hallway and the general education rooms were on the other. My daughter didn’t belong on either side, she was too high for one side and too low for the other side; she belonged somewhere in the middle. She was my “hallway” kid. Finally, at the age of 23, we’ve found a program for her, a program born out of the realization that there is a great need for those “hallway” kids, a program not too high, not too low, a program where she will finally fit in.

My daughter’s ability to speak is what I believe to be the greatest “criteria” that labels her “high functioning.” If it’s a topic that interests her, she can talk you under the table. It doesn’t matter if the information coming out of her mouth is credible or not, she can speak clearly, use whole sentences, and be very convincing. What you don’t notice at first sight however, are the hidden things, the things that move her to the other side of the hallway. The extreme struggle with transitions, the dire need for routines and predictability, the excessive amount of anxiety, and the struggle with the daily living skills that many of us take for granted.

As my daughter was getting close to turning 22 and that magic age when students become ineligible for special education services in the school system, we began looking for adult service programs she could transition to. Again we were faced with the realization that she really didn’t fit into any of the programs out there. They were either too high or too low. Eventually we compromised and decided on a program we thought would best suit her needs.

She never did get a chance to go to that program though. COVID decided that. With every program shut down she was forced to stay home. Nearly two years later she still remains home. My daughter is not the only one affected. There are hundreds of other young adults out there like her disrupted by COVID. Programs and services for her age group have been severely disrupted, more so than many realize. The extreme shortage of staff has caused a crisis for these folks. Two years is a long time to be at home.

That is about to change however, for my daughter, at least. She is about to become one of the lucky ones. Out of this COVID crisis a new type of post 22 program was created. Someone out there realized programs were needed for the “hallway kids” and they acted upon that realization to create a new type of program, a program not too high, not too low, but rather in the middle. Perhaps in the end we will be able to say the unexpected detour and long road COVID took us down led my daughter to the right destination. Finally, after all these years.

One of my favorite posts is “What If” published in Jan. 2019. There have been so many times during this journey that I have silently thought to myself what if. Once again today I find myself asking the same question.

Kelsey turned 22 in May of 2020. We had started planning her transition into adult services a year in advance. We had painstakingly planned every detail we could think of in order to make her transition less stressful. Never could we have ever imagined all of our carefully thought out plans would be destroyed by a global pandemic.

Covid 19 forever changed our journey. Kelsey has not physically stepped foot into a program in nearly two years. Most of our children were forced to spend a few months at home but have since been a long time back in their classrooms. The transition back into day programs for our post 22 children however has not been as easy. So many of our children still remain at home waiting for spaces in these programs to open.

I wonder to myself what if Covid never happened. What if she transitioned as we planned and her journey had never been abruptly stopped. What if she had been able to continue down the path we so carefully chose for her. What if she would have been happier.

Some what if’s I’ll never know the answers to, but some I’m sure about. What if Covid never happened and we didn’t get to spend some extra time snuggling on the couch every morning. What if Covid never happened and we didn’t get to spend lunch together every day with endless conversations talking about all the things she cares so deeply about. What if Covid never happened and we didn’t realize just how deeply she is connected to her home, her family, and her support circle.

Kelsey has been stopped at a roadblock for a very long time. The beginning was very hard. It’s not easy for any of us to be abruptly cut off from a familiar routine that we do every day. Over time though she has settled into a new routine at home, a routine that she now finds very predictable and comforting.

So here we are almost two years later. Two years after a transition that never happened, two years after a pandemic that rocked our world. Two years later we have finally found a new program for Kelsey, a new direction to take, a new road to follow. After being home for so long, the transition is going to be brutal. This is going to be one of the hardest roadblocks we have had to make our way around. I have to keep taking deep breath’s however and ask myself what if this was meant to be and what if this new journey is going to be amazing.

It’s been a while since my last post. It’s been a while since my daughter last stepped foot in a supported program. It’s been 17 months actually. The Covid-19 pandemic has left its mark on all the transition planning we had painstakingly planned.

My daughter officially aged out of the public school system in May of 2020. We had spent the year before planning for her transition into adult services. Transition is hard for most of us. For my daughter it’s a nightmare. We had anticipated the obstacles she would face and carefully planned how she could overcome them. Never could we have planned, however, that a global pandemic would cause all of our well laid out plans to be taken away.

Here we are 17 months later and my daughter remains in her room glued to her IPad. Adjusted to her new life and way of doing things she is happy to seldom leave the comfort and safety of her own house.

It’s been a while since we were in a world free from pandemics, masks, washing hands, grim news reports and closures. It’s been a while since we were free to go about our day not worrying about the world around us. It’s been a while since my daughter traveled the path she became to know so well.

A lot has happened to all of us these past 17 months. Spending a year and half at home has left it’s mark on all of us. Our lives have been disrupted and just as our daughter has changed, so too have we. The “perfect path” we thought we were traveling on is no longer taking us in the right direction. COVID-19 has left a huge detour along our journey. It’s not the first detour we’ve run into and it won’t be the last. We’ll eventually make our way around it.

My daughter has been at a standstill for a while now. It’s time to start moving again. Just as so many other families like us are finding out however, the adult programs for our children have been crushed by the COVID-19 pandemic. Just as everything was forced to shut down so too were they. Opening back up amidst guidelines, safety protocols, shortage of staff and long waiting lists has clearly not been an easy thing to do.

Seventeen months later and we wait. In the meantime we’ve taken things into our own hands and done something very special. COVID-19 has given us the time and determination to take a huge change of direction and make our own new path. Stay tuned for the next blog!

Another rainy Saturday and nowhere to go. The second wave of the COVID virus was upon us and my daughter was not happy at all. As much as we try to hide some of the realities of our world she always finds out. Today she is well aware that places are going to start shutting down again and without putting it into words is letting us know how she feels about it.

I grab a mask and head to the nearest store in search of a gingerbread house kit. Walgreens does not disappoint me. I grab a kit and all the candy I can find. Thirty nine dollars later I am confident that I have found a great distraction to this day. We’ll spend the afternoon putting this house together and hopefully forget a least for a little while about everything else.

First of all let me just say that putting together a gingerbread house ( even when the pieces are already preformed) is not an easy task. It’s even more difficult with a very irritable daughter that has had enough of this pandemic. There is not enough icing in the world to make this house stick together today.

After a few attempts, roof and all, we finally get the house to stand. Now come the decorations. And decorations we certainly have. There is no shortage of candy here. My daughter however has all of a sudden developed a strong disliking of the color red and separates all of the red candies.

The gingerbread house is completed and much to my relief is still standing. Candy covers the roof and sides. Blue, green, yellow. All but red. The red ones sit in a bowl on the table. I of course as you all would too grab those candies and start eating away. My daughter tells me to stop. Her words, “You can’t touch red during a pandemic.” She knows the world around her is in the red and it’s not good. Suddenly it all makes sense to me and those m&m’s aren’t as appealing anymore.

2020, the year of the gingerbread house without red candy. It’s so sad yet so appropriate. There is hope however and I’m sure 2021 will find our gingerbread house covered in every color, including red.

The rain never stopped today and we never left the house. With extra time on my hands I started looking through the photos on my phone. I scroll through the 1000’s of them and am reminded of so many things that have passed us by. I have come to rely on the pictures on my phone as the keeper of my memories.

My daughter is not one to take photos. She doesn’t need to. She has the uncanny ability to vividly remember many things both in the present and long ago. Her mind is her own camera and she can remember places and events as she pleases.

She talks a lot about her memories; both the good and the bad. Unfortunately the earliest memory she recalls is not good. She remembers the time she was left in the bathroom in preschool. She can recall the color of the floor and the sound of someone finally opening the door to find her in there and bring her back to her classroom. There have been other times that she also remembers with great detail when she found herself alone and feeling lost. Her first day of high school when the van driver let her off at the wrong door and told her to “just go wait inside.” She did go inside and she can recall all the other kids in the lobby talking in groups and then suddenly they started walking up the stairs and she was left alone. She has a few other memories unfortunately of times being “lost” that she can recall with great detail.

Despite the bad memories she has many good ones that she often talks about. She randomly pulls them from her head and talks about them as if they just happened. One such memory is of elementary school when they played some sort of game on the first day of school where they tried to guess whose shoes were whose. To this day she can still remember what shoes everyone was wearing. Another story she tells is of a community trip to McDonalds in high school where they ate outside and all of a sudden they were surrounded by pigeons. Her hamburger ended up being thrown to the ground and a teacher’s purse ended up swatting those pigeons away. Most of us probably would have snapped a picture or two of those pigeons; she did it in her head.

She carries so many other pictures in her head of the memories that have passed her by. She can recall things like what people were wearing, where they were standing or what they were holding. Things most of us couldn’t accurately recall without the help of an actual photo. After coming home from Disney on Ice one year she told me Princess Merida must be left handed because she was holding her bow and arrow in her left hand. I looked through my photos and sure enough she was right. There’s not too many of us that would remember something like that.

I wonder what her memories will be of her time spent at home these last several months. What will she remember about COVID-19? She takes notice now of people’s masks and can remember what kind they were wearing the last time she saw them. She can also remember if something is different in a background on a zoom meeting. If you zoom one day from your kitchen and the next from your bedroom she’ll not only remember but she’ll remember what color the walls were in each room. I hope as time goes by she will be able to have found some memories from this time that she can pull from her head and smile about. I hope she is able to have some good memories that we would have taken pictures of on our phone.