We have all heard about the necessity of being your own best friend, having self-appreciation, and the importance of performing self-care. Even the Stuart Smalley character from the comedy show, “Saturday Night Live” stressed the importance of saying daily affirmations like: ” I’m good enough and I’m smart enough, and doggone it, people like me!” Not everyone will like us, and visa versa, but that’s OK. As long as we are alright with who we are and our place in the world, the rest are just details. We are the cake and our friends are the icing on it; it’s a major bonus when we have been fortunate enough to have been blessed with true friends, you know, the ones you can count on your one hand. But even with such a priceless gift, there will still be times when we will be on our own. Our special children are often the main reason for that. Illness, behaviors, our own exhaustion, and depression. Winter is just around the corner and with it, an extra layer of isolation, darkness, and sadness.

I know that I am effected by Seasonal Affect Disorder, ( SAD), or the ” winter blues”, usually peaking by the middle of February, when we are stuck at home due to illness, bitter cold, and snow. My self concept is negative. I don’t feel good or smart enough; I actually feel depressed and hopeless. It took me a long time to realize and understand the connection between mind and body, and what I was literally feeding my mind and body with, was not healthy. A bad habit of negative self-talk and junk food, created the perfect storm. Not replacing this self-imposed destruction with kinder options. I didn’t even realize at the time how deeply ingrained these bad habits really were and how much they were truly hurting me. Familiarity is always the safer way to go, change can be too scary and painful, until you are on your knees, desperate, which is exactly where I ended up. I have made changes slowly for the better over the years. I feel well most of the time and have changed my mental perspective to a healthier one by my choices and with prayer, once day at a time. But it will always be my Achilles heel, a constant work in progress. This self-awareness helps me now to better prepare for the return of my least favorite season, but instead of succumbing altogether to the depths of despair, I have learned to fight back. In the process, I have also learned how to actually enjoy being with me, myself, and I. A silver lining that has served me well year round.

It’s funny how you can feel alone in a crowd or not alone when you actually are. Or how about not feeling alone in a crowd or feeling alone and there is no one there. We have all felt all of the above, and I think these scenarios are particularly heightened with a special needs child. I have definitely felt alone, even when physically with other special families, but simultaneously quite content when by myself. I have also felt very connected and engaged with others when in a group setting, as well as quite lonely when home alone. Sometimes my reaction has to do with what’s going on with Brian that day; a challenging day tends to exacerbate the feelings of loneliness and isolation, even when in a crowd. A lack of sleep is also a major game changer. Or I might be internally triggered by a comment or something that I see. I try not to make comparisons, keep a positive attitude, and be objective. But we are all human and in the special needs world, parents are already profoundly affected by their child’s disability, in all ways imaginable, for better or for worse. It would stand to reason that our perceptions, reactions, and feelings to situations that involve our kids will be the same at times. I know mine have been. Yet, other times our opinions regarding our special children couldn’t be more polar opposite, even when discussing the same disabilities. Sometimes being in this particular position with other special parents is very uncomfortable and may cause us to shut down, lash out, or be misunderstood. It can happen to the best of us, regardless of our good intentions.

We special parents really need to give ourselves permission to “agree to disagree” with others, make mistakes, and to practice self- forgiveness, the very same forgiveness that we would hope to offer others. Eventually, we will disappoint our children, our families, our friends, and ourselves and certainly visa versa- this is a guarantee! It’s really hard to forgive sometimes and it’s a process that requires time and perspective. Interestingly, I have personally found that it is easier to forgive when I apply the same criteria to myself: I make many mistakes, but I’m still good enough. My foibles show just how human I really am, but it doesn’t define who I am. I know my strengths and weaknesses and have come to love them, even poking fun at my weaknesses! I believe wisdom is one of the gifts of middle age and I appreciate it greatly! These realizations have helped me to find contentment whether I am alone or with others. Years ago, I could never imagine being happy with self-contentment, in fact, it would have been unimaginable and a tragedy! I needed others to define my worth back then. Today, I LOVE having time to myself; I enjoy my own company, as well as genuinely enjoying being with others, especially those who I share commonalities with. I have learned in the course of my special needs journey that you will not be friends with all of the special parents with whom you encounter along the way. As a matter of fact, if it weren’t for our children, there wouldn’t be any connection at all, yet, there can be still be value in those interactions. Perhaps you will learn something important that will help your child or that individual was placed in your path at the right moment in time to teach you a valuable life lesson. I have definitely experienced such moments over the years and have come to appreciate them for the gifts that they truly are. And THAT is truly enough!

Rain or shine, snow or sleet, alone or together with others ,I continue to learn the beauty, pain, love, and richness of the human experience in this thing called “Life”, particularly influenced by the special needs journey with my beautiful Brian, yet, I am not ultimately defined by my son. I am still Me, Myself, and I , an eternal work in progress, whom I’ve come to know and love over the years and, yes, that’s good enough for me (us, lol 🤣)!

Until we meet again, thanks for reading! 😊

Last Summer, a wonderful biography was released in the movies about Fred Rogers, the beloved host of “Mr. Rogers Neighborhood”. He was a man who was incredibly gifted in deeply connecting with children from all backgrounds via a daily TV program on Channel 13 in the 1970s. It was a delightful film that showcased the heart of a man who truly loved to bring happiness to kids and to make them feel important. Mr. Rogers communicated daily to his young audience “you’re special!” and meant it with his whole heart!I believed him wholeheartedly myself while watching this film. I was particularly moved by a scene in the movie where Mr. Rogers was interacting with a physically disabled young man. It reminded me of when two best friends get together. There was genuine interest and love and no one else existed in that moment. No wonder Mr. Rogers was so beloved amongst so many children back then! The values of love, kindness, respect, and compassion that he taught through his daily shows are still the things that all children ( and adults) desire and respond to; it is a part of our human makeup and never goes out of style! One could definitely conclude that Mr. Rogers was indeed a very special person, although I don’t think he would have necessarily thought that of himself. Yet, his connection with thousands of children over the years via his TV program leads me to believe that he certainly was extraordinary.

Disabled children and their parents are often referred to as “special” as well, though I honestly see nothing “special” about disability and it’s many components. Brian was born with Down syndrome and later diagnosed with autism. Both of these developmental disabilities cause several consequences that require medical, educational, and social interventions and always will. Don’t get me wrong- I understand why people say: ” Brian is such a special boy” or ” You and Jim are such special parents”. It is usually meant sincerely and with the best of intentions. In fact, if the shoe had been on the other foot, I don’t doubt that I would have said the same exact thing; I’m sure I would have! Yet, from my vantage point, I can tell you that there is nothing at all ” special” about my son’s disabilities or his needs. Brian’s requirements just happen to be a part of who he is. We choose as his parents to help him as best we can. We often make mistakes. We become weary working on the same goals, year after year. The fear of Brian’s future when he becomes an adult looms over our heads like a Damacles sword. And the inevitable time when Jim and I are no longer here: what then? The list goes on and on. In the early years, we were extremely overwhelmed and afraid. Today we are sometimes still overwhelmed and afraid. Raising children is certainly a faith walk, whether they are disabled or not, but the physical, emotional, social, and psychological needs of kids like Brian are generally more intense and for a lifetime. It is certainly not a journey for the faint hearted, yet we as parents, and especially our children, persevere and are amazingly resilient, as the human spirit often is.

I often think about how do we parents and our kids go on, day after day, year after year?… Sometimes people will say ” I don’t know if I could parent a disabled child”. Jim and I weren’t sure either, especially in the early years. But what choice do you really have? This is your flesh and blood, the child that has been given to you. Yet, I learned a few years after Brian was born that an acquaintance had chosen to give away her baby boy with Down syndrome. At the time, I confess I was appalled that she would do such a thing. She knew about Brian and it didn’t make any sense to me why she did not want to keep her beautiful son. Over time, and in the experience of caring for Brian, I came to understand that not everyone is capable or wants to raise a disabled child. It is a choice that some people make. For those of us who do choose to raise our disabled children, we have a lifetime journey ahead that requires strength, courage, grit and a sense of humor. The latter has served me well when things are really out of control and the former three have been modeled by our beloved Brian who is Strength and Courage Personified. Raising Brian is difficult, yet rewarding, sometimes painful, often tiring, and incredibly loving. I can’t imagine life without my son; I have the privilege of being Mom to the sweetest soul I know. I have never known such a pure, unconditional love. This love sustains me in the challenging times and ultimately encourages me to pick myself up and move forward again and again.

For my husband and I, we choose to walk by faith when a lot of things don’t make sense in our lives, especially when it comes to aspects of Brian’s life that we have no control over, which is pretty much everything! We exercise our free will in making the best choices that we can for our son’s well being in all aspects of his life. We have learned tremendously from many people over the past 16 years, who we believe were put in our lives for a reason. I am forever grateful for their help, support, and encouragement and don’t know what we would have done without them! Some of these individuals were in our lives for just a season, while others have become our friends. Either way, we are the better for it. The support and love from our extended family has also been a great comfort and encouragement both in the good and bad times while raising Brian. It means more than we can ever say.

Jim and I don’t see ourselves or Brian as special, rather, we are just ordinary people placed in extraordinary circumstances. We wish Brian didn’t have to endure the multiple consequences of his Down syndrome and autism for the rest of his life and would have certainly preferred if he could have avoided it all together. Since we can’t change these facts, we have chosen to change our perspective on his situation, one day at a time… We choose to focus on the positive, (most days) when we don’t always feel like it. We are realistic about Brian’s challenges and their implications on his life, but remain hopeful. We celebrate every small achievement, because it’s too important not too! We remind ourselves how faithful God has always been in providing for Brian and will continue to be. We choose “an attitude of gratitude”- it does not come naturally to us at all, but over the years we have made a wonderful discovery that there is always some reward and a peace when we decide to be grateful, no matter what. It’s like exercising a muscle, the mind also becomes conditioned by what you focus on after a while. We choose to count our blessings and discover that we really have so many! When we fall, we get up when we are ready, which happens quite often. We give ourselves lots of slack when we make mistakes. We try to take care of ourselves so that we can take care of Brian- he is depending on us to do that . Eating better, taking naps, laughing a lot. Doing whatever it takes, whenever we can, to make our extraordinary lives just a little more “ordinary”. Simplicity is great and definitely underrated! I am grateful for any and all of these moments and will continue to seek them always. I’m sure Brian will thank me for that! 😊

Until we meet again, thanks for reading!

Brian celebrated his 16th Birthday in Niagara Falls this past Sunday with full fanfare and lots of brownies, just the way he likes them, with lots of whipped cream and hot fudge! Life can be sweet for our beloved son and we are most grateful that he can experience new things , even when it takes him out of his routine and comfort zone. I often say to my husband that we should continue to keep this momentum going while both of us are still mobile and motivated. A part of me is in denial that we are getting older, although my knees remind me every morning that this is indeed the case. Energy levels are less, dinner at 4pm sounds devine, and being referred to as “Mam” is the norm these days. Forever young on the inside, but changing with time on the outside, a part of the life cycle that all of us must face. Denial is just so much easier and a much better destination, at least for a while, don’t you think?

Milestones, like birthdays are also a reminder of how far Brian has come, while simultaneously how little has changed, with a big question mark that is the future. It’s a curious dichotomy of the known and the unknown. The future is scary and hopeful at the same time. It’s a time to also take a break and live in the present moment and to let tomorrow take care of itself. I am still learning how to do that, a work in progress for sure, but I am getting better. Vacation this week has definitely helped me with relaxation, even though there is always a certain level of stress because of Brian’s many needs. No matter where you go or take a break, a respite, a getaway, whether for a day or a week- it is an absolute necessity for special needs families. We may and often have had to sacrifice many other things, but down time is too precious not to take. In fact, it’s most important on my list of priorities, and I will do whatever it takes to make it happen. It’s worth it and you’re worth it, repeat!!

In addition to family vacations, the gift of respite made possible by others is also what special needs parents truly covet: time alone, time with each other, time away, time to sleep, etc… It’s a precious gift that is often hard for many special families to come by and so appreciated when it does happen. We really appreciate those breaks and they provide the impetus for us to keep moving forward, for our journey is a long, exhausting, and often lonely one. So just in case extended family or friends are wondering what to give for the holidays, you have the perfect idea to share with them! 😊👍🏻

It’s hard to believe that Summer 2019 is almost over, just like that! I am grateful to have experienced its warmth and light nights . I love the light, breezes, and vibrant colors. I wish to bottle these things for a bitter cold day in February when they will come in very handy. I love this moment in time as I write. I’m so happy to spend a few days at the beach with Jim and Brian before we resume our regular routines. I’m eternally grateful to be colon cancer-free 10 years this month. I pray to continue to have an “attitude of gratitude”, especially when tough times inevitably arrive. I am especially grateful for this vacation because I really needed a break. The The Ocean is the perfect elixir for all that ails you… 🌊 🌊 It’s Brian’s most Happy Place and ours as well!

Until we meet again, thanks for reading! 😊

Our Summer has been an unusually busy one, with family events, camps, vacation, and Summer school for Brian. As always, Summer goes much too quickly and it’s hard to believe that the middle of August is almost here. Today happens to be one of those rare quiet days, with nothing especially pressing. It’s a gorgeous morning and you wish to bottle today’s sunshine for a bleak winter day in February. Before you know it, Winter will inevitably arrive way too soon in all its snowy splendor and freezing temperatures, but until then, there is still more Summer to savor!

Our extended family has been together this Summer for some very joyous occasions including: our great niece’s baptism, our niece’s wedding, our nephew’s white coat ceremony for medical school, our Aunt’s 80th birthday party, a visit with our extended family from Norway, and just around the corner: Brian’s 16th Birthday party with extended family! Plus Niagra Falls and the Jersey Shore towards the end of August. Whew!! A whirlwind of activity, fun, treasured memories, and milestones that will always be fondly remembered

It was very heartwarming to see Brian participate in these special events this Summer in his own unique, yet predictable way. He loved being with family and I notice now that he is more observant of people and places than before. Transitions to new environments and meeting new people still take time, but once Brian settles in, he is usually fine, yet we always have snacks, headphones, an iPod and iPad for backup, just in case. So far, so good! This is probably the hugest social milestone for Brian, the ability to tolerate so many new environments and to enjoy family members who we don’t see that often. We are so proud of our boy for his resilience and willingness to keep trying, as he does in all things, step by step…

Upon further reflection of these wonderful gatherings, I realize once again that our milestones as a family will always be different than everyone else’s. That’s no huge revelation of course. It is obvious that Brian will not get married or go to college. Nor will he ever drive, hold a full-time job, or live in his own apartment. While Jim and I have certainly accepted these facts as Brian’s reality, I still occasionally experience that longing, that ache for my son, wishing that he could have had those life experiences too. Recent events did trigger those feelings in me, albeit briefly . It’s funny, because I thought I was “past” such feelings. Yet, acceptance and feelings of the heart don’t have an expiration date. I equate recurring grief from long ago to an old wound that never quite heals over and when the wind blows the wrong way, it’s painful. So it was a few of those gusty winds that had blown over my heart during certain moments this Summer. It is just one of those things that comes with the special needs journey that we can’t ignore and have to call it for what it is; a sadness, a disappointment, a longing, a loss. Brian’s story is not tragic by any means, yet, I have had to change my attitude and perspective to what’s really important to him, for him, and for our family. This has taken time-it is really a never-ending work in progress!

Luckily, Brian is not aware of what I think he is missing: it really is MY issue, not his, and for that I am very grateful. Our little family has learned that the “highs are higher” and the ” lows are lower” as far as Brian’s life milestones are concerned. For example, it was a HUGE deal when Brian took his first independent steps at 5 years old. Communicating his wants for the first time via the speech app on the iPad when he was 10 years old warranted a pudding party celebration! Or hearing Brian say, “Mom” and “Dad” consistently this year has been one of our all-time highlights! And there are many other “highs” over the years, many of which I post on Facebook to share with our extended family and friends who don’t see Brian too often. I do love the historical record this venue provides, so we can see how far Brian has come, step by step…These captured moments also give me hope when I get discouraged sometimes during those “low points” as well.

Conversely, it’s hard to see light in the darkness when certain milestones seem so elusive.. Like using the bathroom independently, or showering/getting dressed. I never realized until we had Brian just how many steps each one of us take every day to perform self-help skills and activities of daily living- there are literally thousands of them! Neurotypical people do these things automatically once they are taught. Special children require oodles of repetition, practice, and patience to learn these skills- some of which will be never learned at all due to their complexity for our kids. This is when the ” lowers can be lower”, when these milestones don’t come to fruition, even after many years. This is also where support, sleep, readjusted priorities, and most importantly, a good sense of humor is absolutely ESSENTIAL!

This is not to say that Brian won’t continue to learn and achieve such milestones, for he certainly has and will continue to learn what he is capable of. Learning is life long for the disabled- there is no ceiling or limitations on what can be achieved. It will just take longer and will require patience and support. As far as Brian is concerned, life is long. I have learned more about literally living in the moment and being fully present from my son, than from anyone else, a great personal milestone that still requires patience on my part, but I am getting there too, step by step..

Brian will turn 16 years old in just a few weeks, a fact that my brain cannot fully comprehend! Where did the time go, even those many painful moments over the years, where time froze and I thought would never end? So many milestones achieved, with many more to go, but most importantly, Brian’s life is one that we believe he is happy living, at least most of the time. And that matters more to him than the achievement of a million milestones!

Until we meet again, thanks for reading! 😊

Summertime is the season for sun, outdoor adventures, and long lazy days. It brings warm weather, swimming pools, an extended school year, and camps for kids. There are school forms, camp forms, forms for the doctor to sign, and a sense of urgency to register our children as soon as possible in order to avoid the dreaded “wait list” for these camps. Special children in particular can not be left to their own devices or have too much idle time. Many of our kids don’t know how to occupy themselves without a structured routine, which is why Summer school and camps are so important in filling those gaps. Brian is no exception to this and is most fortunate to participate in all of what the Summer has to offer. He has typically enjoyed all of his camp experiences- until recently.

I was looking forward to having Brian participate in a camp that he had attended in the past. He always seemed content both coming and going from this particular program, sans the initial “transition blues” that is typical Brian, especially on the first day, but then he would settle in. However, this year was different. Brian was not happy, not just on Day 1, but for the entire time he was at this camp. He “communicated” his displeasure by verbal protest and body language, but I honestly thought during those particular moments that he was just being a “teen with a tude”. I also thought there was never a problem at this camp before, so there was no reason not to send him. I had also arranged for Brian’s home behaviorist to come to camp and provide his counselor with support every day for 2 hours . This always worked out well for both the counselor and Brian in the past and I had no reason to believe it would be any different this year- but I was wrong.

While the behaviorist was there daily, Brian did participate in various camp activities, albeit briefly, preferring some more than others. Shockingly, he refused to go into the pool the first day, which is Brian’s favorite activity of all time! I should have known right then and there that something was wrong…The behaviorist was not there during pool time initially. The same thing happened again the following day- Brian did not want to go in the pool. The next day, the behaviorist was there during pool time, and Brian went in. Then the unthinkable happened- Brian had an accident in the pool. He hadn’t done that in years- I was truly shocked! I was also annoyed at myself for not “listening” more carefully when Brian was clearly communicating that he was unhappy. In retrospect, Brian did not want to get out of the car each morning and couldn’t wait to get into the car each afternoon. When my husband asked Brian how things went at the camp, ( which Jim mentioned by name) he whined and signed ” all done”. I am so sorry that I didn’t “get it” sooner in the week: it makes me so sad that I let Brian down. I honestly didn’t realize exactly how much Brian understood of what he didn’t like and attributed everything to adolescence and transition difficulties. It is moments exactly like these when I wish my son could speak and tell me what is bothering him.. It is also a stark reminder of how dependent we are on others to help us help Brian and how we always will be.. This very thought makes me both scared and grateful at the same time.

No one knows better than Jim and I how many and complex Brian’s needs are. Which is why Brian needs his own personal counselor at camp. I am also aware of how difficult it must be for a camp counselor to be placed with a multiply- disabled camper they have never worked with before. Which is also why I arrange for a behaviorist to “train” the counselor for a few hours each day. I’m not sure what more I could have done. I do also wonder whether the camp application that I painstakingly filled out was really looked at. Or how carefully were Brian’s needs considered before he was assigned a counselor?

It is obvious that there was a communication breakdown between home and camp. It also appeared that the counselor was overwhelmed by Brian, but didn’t want to say so. I felt like I had to “pull out” information daily as to what was going on. Thank goodness the behaviorist was there for a few hours each day and I was able to learn things that way. It was finally revealed that one morning Brian sat for a significant period of time doing nothing because he refused to move, despite the daily mentoring from the behaviorist. That was the last straw for me- he won’t be going back to this particular camp again.

I wish this camp experience had been a more positive one for Brian. It should have been, considering all the planning, time, and resources that went into it. I had also hoped that the line of communication between home and camp would have been more direct, consistent, and transparent. Although this was not the case, perhaps the silver lining was that Brian did clearly express his displeasure, the most I’ve ever seen him do, and I will make sure to take it more seriously next time. Maybe the camp was not equipped to manage Brian’s needs this year- if that was the case, they should not have accepted him into their program. I will never know exactly why Brian was so unhappy at camp this time, but what I do know is that some things in life are meant to reach their natural conclusion, regardless of the reasons. I believe this camp experience qualifies as one of those instances.

I may reach out to the camp with my concerns, just as an FYI, but haven’t determined exactly when. I’m sure I will be inspired to do so at the right time; I’m just not quite ready…In the meantime, there is still a Summer to be enjoyed and savored, which is exactly what Brian plans to do- especially in the pool! 🌊 🌊

Until next time…thanks for reading! 😊

As our nation celebrates 243 years of independence today, I am reminded of how truly blessed Americans are in many ways and for many reasons. Now mind you, there is always room for improvements, for wherever you have human beings, you will have human problems. The United States certainly has its share of challenges to overcome in many areas. Yet, despite the numerous problems , there are conversely as many resources that make America the envy of most countries.

Millions of people continue to seek citizenship in America because of economic and religious opportunities , the very same freedoms that our forefathers fought for and that we have the privilege of enjoying today. Americans often take these freedoms for granted; we sometimes forget that most places in the world do not have democratic governments, free speech, religious freedom, economic opportunities, or natural resources. Despite the frustrations and hardships that Americans face, I still would never want to live anywhere else in the world! As a matter of fact, I did live in Europe for a period of time and had the opportunity to travel outside of the United States on several occasions. It was fascinating and fun to learn about different cultures in various places. While living and exploring a host of countries was both very intriguing and exciting, ultimately, there was “no place like home”!

Another reason why I am grateful to live in America is because of the resources that are available for disabled individuals. Compared to other nations, the United States is light years ahead. Similar to health care, socialist governments ration their special needs services resulting in waiting lists for its citizens. Some countries have no resources at all. Special education is certainly not equitable throughout the United States, or within individual states for that matter, but, there continues to be change for the better, as painstakingly slow as it can be. Nevertheless, I’m still glad that Brian was born here. There are opportunities for him to learn and experience a much better quality of life compared to anywhere else. I am so grateful that Brian has “life, liberty”, and can “pursue happiness” with support from both family and the community.

Patriotic pride was instilled in me by my parents who both emigrated to America from Ireland in the 1950s. They were very grateful for the opportunity to be sponsored by relatives upon their arrival to New Jersey. Mom and Dad worked very hard in order to provide a good life for our family and were extremely proud to be American citizens. They also believed in giving back and were very active both in their church and local community. Mom and Dad made America their home and taught my siblings and I to be appreciative of what we had, to be hardworking, and respectful. My parents would be the first to say how blessed they were to pursue a life in America that included long term economic and religious freedom, something that would have been virtually impossible as Catholics in their native Northern Ireland.

As we celebrate the 4th of July with family and friends , may we be mindful of our blessings as American citizens and the sacrifices of those who have made such gifts possible. Nothing worthwhile usually comes easy; we know this only too well as special needs parents. It is often a difficult road and our children’s progress can be so slow at times. I can definitely relate to literally “watching the grass grow” with Brian and am often discouraged by it. I’m sure our forefathers felt the same way while fighting against the British, but their long-suffering perseverance payed off in victorious independence! It is an example of the enduring human spirit, despite the numerous obstacles, and NEVER giving up! That sounds just like a typical day in the life of a special needs family, doesn’t it? Our forefathers would be so proud! 😊

Happy 4th of July! God Bless America! Until we meet again, thanks for reading. 😊 🇺🇸 🇺🇸 🇺🇸 🇺🇸

Another school break is just around the corner, and with that, are dreams of sleeping in, pool time, and some much-needed down time for a couple of weeks before Summer school begins. This year is no exception! I will pack Brian up this weekend for overnight camp that commences this Sunday for one week. This will be Brian’s 9th year at Camp Moore, a wonderful place with fabulous counselors who ensure that the children have the time of their lives- and they do! I am so grateful that Brian has this annual opportunity to go away, to be independent from Jim and I, and to interact/ socialize with other kids and adults. Overnight camp is a brief simulation of what it would be like for Brian to be on his own, which will eventually happen one day when Jim and I are no longer here. Personally, I’m glad that we decided to start sending Brian to overnight camp sooner versus later. If I had waited too long, I’m not sure if I would have sent Brian at all and that would not have been good for his independence or ours. Of course, having Camp Moore in such close proximity ( only 30 minutes away) is a huge help both physically and psychologically.

While Brian is away, I will have the chance to take some respite for myself, by spending time with my beloved airline friends. It will be a “gal pal laugh fest” for 5 whole days, even thinking about it now brings a huge smile to my face! This year, the friends are meeting in Michigan, which is home for 2 of our gal pals, who will be hosting the group. I feel so blessed to be able to get away for this time and quite frankly, I really need a break from care taking! Jim has been traveling frequently for work this year so far, so Brian and I have been mostly on our own during the week. Fortunately, Jim’s business travel is very minimal this Summer, so Brian and I will get to spend more time with him for a change! We will be taking a family vacation to Niagara Falls and the Jersey Shore in August that we very much look forward to. In the meantime, I can’t wait to take a break from all that entails special needs parenting next week. It’s funny how you appreciate even the little respite moments, like being driven by Uber to the airport, relaxing with a cup of coffee and a good book, or one of my all-time favorites : resting on the plane! I’m never able to fall asleep inflight, but I sure do know how to relax, especially once the main cabin door closes and the plane pushes back from the gate. Then you know that respite time has officially begun! Knowing that Brian is having fun at camp and is being well taken care of, enables me to relax and take good care of myself. Self care is good for the entire family, let’s face it: when Mom is happy, then everyone is happy! I know Jim and Brian would agree wholeheartedly! 😊👍🏻

Speaking about happy, another reason why I can go away with a smile on my face and a spring to my step, is because of Brian’s school. He had a great year and continues to make progress, slowly, but surely . The staff were outstanding and I continue to marvel at their persistence and patience with Brian in helping him to learn. I am so proud of Brian and deeply appreciate the staff’s hard work and the ongoing collaboration between home and school. It is certainly no easy feat: you can imagine how challenging it would be to teach special students, each one with multiple and often complex needs. The amount of effort, communication, and follow-up for each student, every day, is truly mind-blowing. Yet, Brian’s teacher and therapists made sure to listen to my concerns, requests, and more importantly, follow through with what was discussed. This really means a lot, for actions always speak louder than words, and this is exactly how progress is made.

One the hardest things for special children ( and the parents as well) to face at the end of the school year is the inevitable change in staff going forward. This is especially true when the staff has been the “right fit ” for your child. As a parent, you just want to keep this wonderful momentum of learning going! Change can be scary and is not always for the better. Like many other special families, we have also experienced some awful school years with staff that didn’t “get” Brian, or even worse, gave up on him all together. Of course, these past experiences come immediately to the forefront of my mind at the end of each school year. There is that sense of cautious optimism and the crossing of fingers that everything will work out fine, but you don’t really know for sure… I felt exactly the same way this year. When I found out that Brian would not have his current teacher again next year, I literally cried. She is such an exceptional teacher and I really wanted Brian to be in her class again. Those fears, that uncertainty, the starting all over again, the intense sadness- it’s like losing a good friend and this is what this experience was like for me. There is a silver lining to this story’s ending, however, and actually good reason to anticipate another great school year after all…

Although Brian will no longer have his beloved teacher, apparently the new teacher he will have is also terrific and well respected by colleagues and families alike. I’ve heard only great things from multiple sources and can now have peace of mind. Plus, Brian’s fabulous one-on-one side will go with him to the new classroom-that’s a huge relief too! Anticipation has replaced fear and hope springs eternal once again. I look forward to what lies ahead for Brian in the next school year. I have no doubt that I will continue to learn a lot myself along the way, not only from the staff entrusted to Brian’s care, but also from Brian himself. He is a Master Teacher in the subjects of love, perseverance, patience, and pure goodness.

Wishing you, Dear Reader, a Summer of peace, rest, and fun! These things are not easy to make time for when raising special children and often require a village in order for them to happen at all! As I get older, peace and rest, wherever or whenever I can get them, are no longer luxuries, but are rather absolute necessities. It’s too hard to cope with our full plates otherwise. May your mind, body, and spirit be renewed and refreshed during moments of respite and self care. Remember, you have to put on your own oxygen mask first, before helping anyone else! This is particularly fitting advice for my flight on Monday morning- once a flight attendant, always a flight attendant! ✈️ 👩‍✈️

Until we meet again, thanks for reading, and best wishes for a great Summer! ☀️ 🌊 🏖😊

My beloved Dad passed away over 5 years ago and not a day goes by that I don’t think about him. It’s still hard to believe that he is really gone, as I often feel his presence, hear his contagious laughter, and fondly remember our many conversations. Dad was a true friend and I miss him, his quiet strength, and wise counsel. Dad’s wonderful sense of humor and fun were legendary to all who knew him! He was kind, caring, and loyal. I can recall countless times in my life when Dad was always there to support and love, no matter what. Like the time I called him from Germany to say that I was returning back to the United States after 16 months and there he was at Kennedy Airport in New York the very next day with a huge hug and a warm welcome. Or when Brian had his open heart surgery and he and Mom spent endless hours at the hospital stroking Brian’s little hand, giving Jim and I both support and much-needed breaks. If you looked up ” loyal” in the dictionary, you would definitely see a picture of my Dad next to the definition.

Dad was a constant support in good and bad times. I will never forget when Dad was my “driver” and “cheerleader”, along with Mom, to and from each of my chemo treatments for colon cancer. Even during this very difficult time, he always had a joke, a reassuring hug, and my favorite snacks from Panera Bread readily available for each treatment. Every trial, every victory, Dad was always there, our family’s rock and quiet strength. Of course he was not perfect, as none of us are. He did lose his temper quickly sometimes, as well as his patience, but never held a grudge. Dad worked very hard to provide for his wife and 4 kids. There were stressful financial times, along with the ups and downs of family life that are inevitable and often challenging. Yet, Dad persevered, continued to work hard, and always put his family’s needs first. I am forever grateful for the wonderful legacy that he left behind. I would like to think that I emulate at least some of what Dad taught me and hope that I make him proud, for he sure was everything to me!

My husband, Jim, had a similar experience with his wonderful Dad, who he lost very unexpectedly during his final semester in college, so unfortunately I never had the opportunity to meet him. Jim will often talk fondly about his Dad as well, sharing old stories and reminiscing about the many ways in which his Dad was a devoted husband and father. Dad McDonnell and my Dad were very much alike in the fundamental, important ways that are essential for a good family life. I marvel when Jim shares something about his Dad that sounds exactly like my own. Jim always says that my Dad was his “second Dad”. My husband and Dad got along famously, sharing jokes, discussing sports, and having many fun times together. Jim and I say how well both of our Dads would have got along. I’m sure that is exactly what is currently happening in Heaven! I can visualize and hear Brendan and Jerry sharing stories, laughter, and especially prayers, for their family members who are still here on earth. I take great comfort in knowing that our Dads are always rooting for us and that we will see them again! I can only imagine what an incredible, joyous reunion that will be! In the meantime, I hold the precious memories, hopes, and love from my Dad very close to my heart. He is always with me. Dad left his indelible mark on my life wherever I go. His wisdom and love will often come to mind during difficult trials and uncertain times. I can hear his advice, feel his reassuring hugs, knowing that everything will ultimately be OK…

Dad also had an incredible love for Brian! He called Brian his ” wee man” and took special delight in literally everything he did. Some of my fondest memories of Dad with Brian were watching the two of them interact during storytime, playing with toys, or giving Brian his bottle when he was a baby. He cheered whenever Brian achieved a milestone, cried with me when Brian was diagnosed with autism, and reassured me that God would always take care of Brian during the times when I needed to hear this most. The Boyle “Coat of Arms” or our family name crest, has a symbol of an oak tree with an inscription on the bottom that says “the Lord will provide”. Our family crest is a beautiful reminder of exactly what Dad always said and exemplifies how he lived his own life by faith and trust. I will always be grateful for the valuable lessons that Dad taught me not only by his words, but more importantly through his actions which were always a testimony to his fine character.

Dad was a reserved man by nature, yet made quite the impression wherever he went. People naturally gravitated towards his humor and fun. Although he preferred smaller group settings, he loved “working a crowd” in social gatherings and was a beloved favorite amongst his friends . Dad and Mom had a large circle of friends from their church, lifetime friendships that were cemented by faith, fun, and family. Dad was very active in church and participated in a variety of committees over the years that both honored God and gave back to the community. I was proud to see Dad in his role as a reader during Mass; he read the Scriptures with such clarity and assurance. Dad also collected our church’s Sunday offerings, was a bingo caller at my high school, and was even an actor/singer in a few shows at church , the most memorable being “Guys and Dolls”- who wudda ever thunk it?!

Dad’s lung cancer diagnosis in January 2014 was very unexpected and devastating. Dad had quit smoking 35 years before, so he never thought in his wildest dreams that this was even a remote possibility. Nor did he ever consider that asbestos exposure as a young man working in the shipyards over 60 years ago in Belfast, Northern Ireland, would be a factor. Yet, asbestosis was the causation that morphed into small cell lung cancer in Dad’s case. Everything moved so quickly once Dad was officially diagnosed. Doctor appointments, scans, MRIs, biopsies, and chemo treatments. It was absolutely heartbreaking, but there was really no time to process or grieve what was happening- that would happen much later. I accompanied my parents to all of the appointments and treatments, giving my best academy award performance of strength and valor. Meanwhile, I was dying on the inside, not knowing how I would pull this act off, but ultimately I did. I then understood how Dad must have felt when he took me to my own chemo treatments and realized how truly strong he really was, despite the agony he must have felt. It was Dad’s brave example that ultimately helped me to be brave too during his time of need.

God called Dad home almost 3 months after his lung cancer diagnosis on April 1, 2014. Dad’s transition to Heaven was a peaceful one, surrounded by his immediate family. I will never forget the peace and love that was present during that time and it gives me great assurance of what is yet to come…Our time on this earth is truly only a dress rehearsal- just wait until the big show in eternity!

Dad, you continue to bless my earthly days with your strength and love. I hear your voice and feel your presence. Thank you for all that you gave from your heart to our family! I definitely have a taste of what our Heavenly Father’s love must be like because of your great capacity to love. I take great solace in the fact that we will meet again, and knowing you, you will have a side-splitting joke or story to tell me as soon as I see you….🤣🤣

I love you, Dad, so very proud to be your daughter! Until we meet again….

Happy Father’s Day in Heaven!

Xoxoxo, Brenda 😘❤️😘❤️😘❤️…..

Until next time….thanks for reading!! 😊

I recently celebrated my 58th birthday, a reminder of another year gone by, perhaps another year wiser, or at least I would like to think so. At this point in my life, I am truly grateful for the things that matter most: faith in God, family, friends, and good health. These gifts become even more meaningful and relevant with the passage of time, yet there are also still other “birthday wishes” to be realized…Birthdays present an excellent opportunity to take stock of the past year and to have a game plan for the new year ahead. You think you that you have all the time in the world to execute your plan, yet, that is not necessarily so…Life can change in an instant! Each of us have seen this happen or have experienced it personally. At the very least, I know that I have lived more than half of my life already and the time has sure gone by quickly! There is still so much to experience!

Isn’t it funny how you feel exactly the same on the inside, (hence the infamous “young at heart”), yet, your body gives you direct ( or sometimes subtle) cues over time that it is changing, slowing down, etc.? Of course, that’s the part of the life cycle that we don’t like so much, especially because of our special children . We want to remain strong in body and mind for their sake, as well as our own. It is the prayer of every special parent that I know, including mine, and for very good reason: I shudder to think about the alternative…I try to focus on what I can change about myself for the better and try to do that-this is the best self care there is! I can really only control myself and am responsible for my own choices. When I take care of myself, I am in the best position to take care of Brian. Self care is the best gift I can give to both of us, but of course life’s stressors can make this very difficult sometimes. So often, self care has to be a conscious choice and priority in order for it to happen. If we parents choose to ignore our needs, sooner or later we will pay a very dear price for neglecting ourselves. This is where realizing our own “birthday wishes” can help us achieve this goal and so much more! Here are my “birthday wishes” for my “new year”:

1. I wish to have good health and a sound mind.

2. I wish to laugh way more this year- may I continue to cultivate a sense of humor, especially during those challenging times when it comes in very handy!

3. I wish to experience peace in all circumstances, especially those situations that I can’t control.

4. I wish to spend more quality time with family, friends, and other loved ones. In the end, this is what really matters, but I want to do this more in the present moments.

5. I wish to celebrate every success, milestone, or accolade with joy, applause, appreciation, and chocolate! 🍫

6. I wish to encourage others with my words and actions when opportunities arise. All of us can benefit from love, understanding, and support.

7. I wish to take naps without guilt.

8. I wish to learn something brand new this year, though I haven’t figured out exactly what this is yet…

9. I wish to dream big and without fear about the future.

10. I wish to remove toxic situations and/or people who threaten to steal my joy.

11. I wish to be more like Brian: to have his child-like faith, to have the ability to live more in the present moment, and to appreciate the simple things in life with genuine delight.

12. I wish to always have new wishes to hope for and attain!

This concludes this brief “all about me” blog, and why not?! After all, birthdays come only once a year- aren’t each one of us worthy of accolades and good wishes on our special day? I certainly think so! It is a great reminder of who we are, have far we have come, and where we plan to go moving forward, the stuff that hopes and big dreams are made of. Cheers to a new year!!!🎉🎉🎉🎉🎉

Until next time, thanks for reading! 😊

Recently, a friend posted a list of all her elementary school teachers on Facebook and challenged her friends to do the same as a memory exercise. With the exception of kindergarten, I was able to quickly compile a complete list of my grammar school teachers, as well as homeroom teachers from high school. Even after all these years, I can still vividly see in my mind’s eye each teacher, hear their voices, and in many cases, remember something about each of them. This is quite remarkable, considering that I often don’t remember more recent occurrences! Yet, it actually makes a lot of sense when I reflect upon this phenomenon just a little more: each of my teachers made me feel valued in some way during my elementary and high school years. The only exception was my kindergarten teacher, who was impatient, yelled often, and was clearly overwhelmed by the large class that she had. No wonder I couldn’t remember her name- I didn’t want to! You may forget what someone tells you, but you will never forget how someone makes you feel, even after 50+ years!

Teaching is a noble profession, a true calling to influence and mold the minds of our children. It’s also a huge responsibility that requires the utmost patience, creativity, and enthusiasm. Master educators make their teaching look effortless, but the reality of what it takes to prepare lessons and execute them, manage a classroom, plus interface with parents and school administration, is no easy feat, especially year after year. Having been on the “teaching side of the fence” for 5 years, I can attest to all of this and have often wondered how do teachers persevere for the long term? I’m not so sure if I could have lasted for 20+years, and it was clearly no contest once Brian was born. My formal days of classroom teaching were exchanged for a lifelong teaching assignment. No formal education or teaching experiences could have ever prepared me for raising Brian. It has been quite an adventure, to say the least, and in many respects, more life-changing than I would have ever imagined. Yet, my connection to the classroom is still quite strong because of Brian’s teachers. Like Brian, I am a student too, and have learned a great deal from the educators who have taught Brian over the past 13 years.

The overwhelming majority of Brian’s teachers have been dedicated professionals who have my utmost respect. But a few were also awful and quite frankly, did not belong teaching children with multiple disabilities. There is no doubt that Brian’s challenges are many, yet, I never understood why certain teachers basically gave up on him, refusing to teach “out of the box” or consider my recommendations so that he could learn. As a result, I am even more grateful for those teachers who go above and beyond for Brian and other students, to ensure their learning successes.

Thankfully, Brian has been most fortunate that the majority of his teachers care and want him to learn, doing whatever it takes to make this happen. There is nothing more heartwarming for a parent to see than their child enjoying their school experience and learning. This was not always the case for Brian, but with time, the right school, and a strong home and school collaboration, we are currently in a “good place”. It has truly taken a village to make this happen for Brian over a period of time, with those dedicated teachers leading the charge! Brian’s teachers have been amazing over the years, each one bringing their unique gifts and strengths to the table. I have personally learned so much from our collaborations and am indebted to those teachers for helping my son to learn, for I know it requires a lot! In honor of Brian’s special education teachers (which also includes teacher assistants and therapists), I wish to cite reasons why special education teacher appreciation should be formally recognized on a daily basis:

Special Education Teacher Appreciation Day- Every Day!

Dedicated to the Special Educators who teach, love, and inspire special needs students :

1. You could have selected any profession, but you chose to teach special education students because you know they can learn, despite their disabilities.

2. You customize your lessons according to the multiple abilities of the students in your classroom, going to a lot of effort to ensure that each student will benefit from your teaching.

3. Your patience, persistence, and fortitude with each of your special students, day after day, year after year, is nothing short of amazing!

4. You are an extremely valuable resource that both your special students and their families come to depend upon.

5. Your ability to advocate on behalf of your special students when necessary is both a relief and an inspiration to the families.

6. You really care about your special students and it shows, both in your actions and in the behavior of your students.

7. You don’t give up on your students- you will do what it takes to help them, because you believe in them.

8. You are respectful, open, and willing to take parents suggestions to heart and put them into practice to help their special children learn.

9. You are as excited about student progress, no matter how small, as much as the students and parents are!

10. You willingly deal with trying behaviors, loads of paperwork, and other numerous frustrations because you believe your special students are worth it.

11. You have inspired parents to keep going and to believe in their special child’s abilities, especially during the times when learning can be so arduous.

12. You will always be remembered for what you taught your special students and how you made them feel, both precious gifts that mean more than you can ever imagine!

Thank you, beloved special educators, for all that you do; it doesn’t go unnoticed! I know that Brian would tell you the exact same thing if he could!❤️❤️❤️❤️❤️❤️❤️

Until next time, thanks for reading! 😊