What Is Your Purpose?

Have you ever thought about what your purpose in life is? One example may be the acquisition of material wealth , though these things can certainly be a by product when one fulfills their life purpose. Some people believe their sole purpose in life is to make lots of money, sometimes at the expense of their relationships/ families. It can be very tempting/ alluring, but is it really worth it in the end? As the saying goes “ you can’t take it with you”. I doubt most of us will be thinking about our bank accounts on our deathbeds. Instead, we will be reflecting upon family, friends, and others who added love and meaning to our lives, as well as our own contributions during our brief time here on earth.

There is a distinct difference between the material and the soulful: one is temporary and the other is eternal. Material things are satisfying for a season, but will never quench the desires of your spirit. Of course we all enjoy the trappings that money can buy and those things in themselves are not the problem. The issue becomes when material things become our priority at the expense of our relationships. We have all seen the disastrous effects of what happens when bad choices are made in this regard. No one really wants that to be their life story or ending. It’s just not worth it and it simply won’t matter in the end.

I have always been fascinated by Brian’s lack of interest in any material things. Christmas and birthday presents, for example, mean absolutely nothing to him. He has recently showed some interest in unwrapping gifts this past Christmas, but his attention to the actual gifts themselves were fleeting. For a long time, I felt very sad that the toys we thoughtfully purchased meant absolutely nothing to our son: it was just another reminder of autism stealing something else that was a basic pleasure to most. I had to remind myself that this was not about what I wanted for Brian, but what he wants for himself. As his Mom, my job is to provide Brian with opportunities and exposure to as many things in life as I can, but ultimately I must respect his choices, as hard as that can be at times. It took a very long time for me to learn and accept this fact.

When I learned to become more of a student of Brian, rather than his teacher, I began to discover my true purpose in this life. Don’t get me wrong- teaching our children is very important and fundamental to their development, but sometimes we can get so caught up in the weeds of accomplishments/ expectations for our kids that our priorities can get out of order- how important is XYZ? Will ABC really matter 5, 10 or 20 years from now? How about what they really want? What will ultimately make our children happy? How can we go about helping our children live their best lives on their terms, without losing ourselves in the process? These questions were the segue that lead me to becoming a student of Brian. After a long time of sheer exhaustion and often frustration, I was finally confronted by a thought on one particularly difficult day: do I want to just survive this special needs life or actually thrive in it, despite the inevitable obstacles ? Do I believe this is even remotely possibly? Yes, I desperately wanted to believe, since I was near the end of my proverbial rope. I figured I had nothing to lose at that point and potentially something to gain, so I was more than willing to try- anything!

I will admit that being a student of Brian is a tricky business: he has severe learning disabilities and is nonverbal. It has taken countless hours of observation to understand certain behaviors and learn what Brian is thinking. Augmentative communication has certainly bridged the gap of the unknown, for which I’m extremely grateful. At least I have some insights as to what Brian’s thoughts and preferences are and I do believe there is even more from him to learn and always will be. It’s just very slow to surface, often requiring a great deal of patience and a belief that things will unfold in their own time. I have also learned through my mistakes and experience as Brian’s Mom. Ultimately, what Brian really wants is what all of us want: to love and be loved. It’s that simple! My job, I discovered, is to provide those opportunities that will realize those desires of Brian’s heart. By the grace of God, I try to do so, one day at a time…My hope is that I can continue in this mission until my last breath.

My life’s purpose doesn’t mean that I lose myself or what is important to me in the process. When you are a student of your special child, with an important mission to accomplish, you ultimately learn to create a balanced life for yourself out of necessity. The long haul requires it. Brian will not benefit if I don’t take care of myself, so I make sure now to take breaks, big and small. I read for pleasure, write, and exercise. I try to eat well, and more recently, take quick cat naps. It’s the best acts of self love that I can do, which in turn, allows me to love others and engage in meaningful relationships. I am so grateful for these gifts. My cup no longer runs empty when I make a daily decision to do these things. It’s that simple. If I choose not to, I definitely feel the adverse effects right away. I am getting better at self care and ultimately Brian benefits, so it is always worth pursuing.

My life purpose, My Heart, was a gift given to me almost 19 years ago from Heaven. This precious baby boy was not the one that I expected, but in time, I came to deeply love and appreciate the beautiful person he is and the rich life that I do have, because of my special son. In the middle of tears and hardships in the special needs life, there has also been the most intense love I have ever known. When I thought I lacked a voice or an ability to speak up, Brian taught me how to fervently advocate for him. During times of absolute despair and sadness, I have witnessed incredible perseverance and persistence from a severely disabled young man who only asks for love and to be loved. Brian is Love Personified, the perfect teacher to show what will always be important in this life. All I have to do is follow his lead..❤️❤️❤️❤️

Until next time, thanks for reading! 😊

.

What Is Your Purpose?

Have you ever thought about what your purpose in life is? One example may be the acquisition of material wealth , though these things can certainly be a by product when one fulfills their life purpose. Some people believe their sole purpose in life is to make lots of money, sometimes at the expense of their relationships/ families. It can be very tempting/ alluring, but is it really worth it in the end? As the saying goes “ you can’t take it with you”. I doubt most of us will be thinking about our bank accounts on our deathbeds. Instead, we will be reflecting upon family, friends, and others who added love and meaning to our lives, as well as our own contributions during our brief time here on earth.

There is a distinct difference between the material and the soulful: one is temporary and the other is eternal. Material things are satisfying for a season, but will never quench the desires of your spirit. Of course we all enjoy the trappings that money can buy and those things in themselves are not the problem. The issue becomes when material things become our priority at the expense of our relationships. We have all seen the disastrous effects of what happens when bad choices are made in this regard. No one really wants that to be their life story or ending. It’s just not worth it and it simply won’t matter in the end.

I have always been fascinated by Brian’s lack of interest in any material things. Christmas and birthday presents, for example, mean absolutely nothing to him. He has recently showed some interest in unwrapping gifts this past Christmas, but his attention to the actual gifts themselves were fleeting. For a long time, I felt very sad that the toys we thoughtfully purchased meant absolutely nothing to our son: it was just another reminder of autism stealing something else that was a basic pleasure to most. I had to remind myself that this was not about what I wanted for Brian, but what he wants for himself. As his Mom, my job is to provide Brian with opportunities and exposure to as many things in life as I can, but ultimately I must respect his choices, as hard as that can be at times. It took a very long time for me to learn and accept this fact.

When I learned to become more of a student of Brian, rather than his teacher, I began to discover my true purpose in this life. Don’t get me wrong- teaching our children is very important and fundamental to their development, but sometimes we can get so caught up in the weeds of accomplishments/ expectations for our kids that our priorities can get out of order- how important is XYZ? Will ABC really matter 5, 10 or 20 years from now? How about what they really want? What will ultimately make our children happy? How can we go about helping our children live their best lives on their terms, without losing ourselves in the process? These questions were the segue that lead me to becoming a student of Brian. After a long time of sheer exhaustion and often frustration, I was finally confronted by a thought on one particularly difficult day: do I want to just survive this special needs life or actually thrive in it, despite the inevitable obstacles ? Do I believe this is even remotely possibly? Yes, I desperately wanted to believe, since I was near the end of my proverbial rope. I figured I had nothing to lose at that point and potentially something to gain, so I was more than willing to try- anything!

I will admit that being a student of Brian is a tricky business: he has severe learning disabilities and is nonverbal. It has taken countless hours of observation to understand certain behaviors and learn what Brian is thinking. Augmentative communication has certainly bridged the gap of the unknown, for which I’m extremely grateful. At least I have some insights as to what Brian’s thoughts and preferences are and I do believe there is even more from him to learn and always will be. It’s just very slow to surface, often requiring a great deal of patience and a belief that things will unfold in their own time. I have also learned through my mistakes and experience as Brian’s Mom. Ultimately, what Brian really wants is what all of us want: to love and be loved. It’s that simple! My job, I discovered, is to provide those opportunities that will realize those desires of Brian’s heart. By the grace of God, I try to do so, one day at a time…My hope is that I can continue in this mission until my last breath.

My life’s purpose doesn’t mean that I lose myself or what is important to me in the process. When you are a student of your special child, with an important mission to accomplish, you ultimately learn to create a balanced life for yourself out of necessity. The long haul requires it. Brian will not benefit if I don’t take care of myself, so I make sure now to take breaks, big and small. I read for pleasure, write, and exercise. I try to eat well, and more recently, take quick cat naps. It’s the best acts of self love that I can do, which in turn, allows me to love others and engage in meaningful relationships. I am so grateful for these gifts. My cup no longer runs empty when I make a daily decision to do these things. It’s that simple. If I choose not to, I definitely feel the adverse effects right away. I am getting better at self care and ultimately Brian benefits, so it is always worth pursuing.

My life purpose, My Heart, was a gift given to me almost 19 years ago from Heaven. This precious baby boy was not the one that I expected, but in time, I came to deeply love and appreciate the beautiful person he is and the rich life that I do have, because of my special son. In the middle of tears and hardships in the special needs life, there has also been the most intense love I have ever known. When I thought I lacked a voice or an ability to speak up, Brian taught me how to fervently advocate for him. During times of absolute despair and sadness, I have witnessed incredible perseverance and persistence from a severely disabled young man who only asks for love and to be loved. Brian is Love Personified, the perfect teacher to show what will always be important in this life. All I have to do is follow his lead..❤️❤️❤️❤️

Until next time, thanks for reading! 😊

.

Cancer and Hope: Perfect Together

Here are the three simple words that will alter your life in dramatic and innumerable ways: you have cancer. Everything comes to a screeching halt. You have heard what you have just been told by the doctor, but you don’t quite process the meaning of these scary words. You are in shock, denial, and then gradually, eventually, the reality slowly starts to sink in: I have cancer…..How can that be? Why me? What’s going to happen? Your physician explains what the next steps will be, a “game plan” so to speak, then hands you a copy of your biopsy report that reiterates your cancer diagnosis in stark, medical terms. Your brain is trying to understand what has just happened and what will take place going forward. You ask yourself: how am I going to get through this?

Overwhelming, frightening, and helpless are three adjectives that accurately describe this awful experience for most newly diagnosed cancer patients. You may have even thought that cancer happens to other people, it won’t happen to me, but here you are in your new reality. It’s totally unfair, which is certainly true, but somehow you will need to face your diagnosis, head on, with grace and lots of courage. It definitely won’t be easy, and yes, certain days may be downright miserable, but you know you will get through those moments too with numerous supports. You are already a survivor as a special needs parent. You have been through many great travails with your disabled son or daughter and have remarkably come out on the other side in one piece. That same fortitude and grit will also serve you well following a cancer diagnosis.

When I was diagnosed with colon cancer almost 13 years ago, I, too, felt the aforementioned and was completely gutted initially. So many unanswered questions and fears about today and tomorrow. My brain went to those dark, hopeless places during those early days, to the point where I quickly began to lose hope and was already putting myself in an early grave. In retrospect, we had other major challenges going on at home, so the cancer diagnosis was just the final straw that broke my spirit which was already struggling under the weight of Brian’s disabilities and my husband’s unemployment at the time. It was all a dark nightmare that I thought we would never have to relive again until the end of this past April when my husband , Jim, was notified by his gastroenterologist that he had colon cancer after a routine colonoscopy. All of a sudden, I experienced post -traumatic stress disorder (PTSD) from 2009 in a flash. Those feelings of intense fear, helpless, and darkness from 13 years ago immediately came back and were just as real and intense. The difference this time, though, was that my husband was diagnosed- with the same cancer! What are the odds of that happening? It was bizzare, surreal, and frightening all at the same time.

I had to purposely dig deep for hope and believe that Jim was going to be OK. There are certainly no guarantees with cancer- for anyone- which makes this awful disease all the more frightening. But, treatments have come a long way, along with early detection and pain management. As a colon cancer survivor myself, I know these things to be absolutely true. So, I had to make a conscious, daily decision to focus my attention on these facts and to place my trust in God that somehow He would “work all things together for good”. God’s track record in my own life has always been one of faithfulness, regardless of the situation. This doesn’t mean that things in life have been fair or easy, for many times they are not. but I know I will receive the grace and courage that I need to get through whatever the challenge is because it has happened before, and will ultimately happen again, when I choose to trust the One who makes all things possible. Now, more than ever, I needed to hand over all of my fears and concerns and trust that God would work out all of the details of Jim’s cancer journey. I wanted to be hopeful and believe we would really be OK.

Fortunately, Brian’s many needs kept me distracted during this time, so I couldn’t constantly think about the “what ifs “ of Jim’s cancer situation. I was always aware of these things, however, and would often say a quick prayer to be strong and to try not to think too much ahead. I also tried to continue self care when I could; taking long walks especially helped me to clear my head and live in the literal moment, as I would observe the nature around me. I also went away on a special needs Moms retreat weekend in Maryland last month. The timing was perfect, I met some lovely Moms, and the rest was so needed. I felt rejuvenated and more ready to face what was inevitably ahead. Throughout this cancer journey, extended family and friends were also praying for Jim, which meant so much to us and provided us with the strength and courage to move forward. We were so very aware of the looming June 7th surgery, dreading what it would entail, yet trying to remain positive at the same time. It was mentally and physically exhausting.

The weekend before Jim’s surgery was the most difficult. I had ran out of words of encouragement for my husband: all that was left were reassuring hugs and hand squeezes in those pregnant pauses of conversation or in silence. Jim was lost in deep thought and isolated himself for periods of time in his home office. I completely understood why, for I had done the very same 13 years earlier. You know the inevitable is just around the corner and will need to be faced, alone, no matter how many hugs, prayers, and words of encouragement are received. Our beloved niece, Miriam, arrived a few days before the surgery. Her presence was a balm, a blessing, and a huge help, as Brian’s daily routines still had to go on. Luckily, Jim’s surgery was the first case for his surgeon, so were glad to get to the hospital at 5am that Tuesday morning, since sleep had eluded us anyway.

I was able to remain with Jim in the surgical center at the hospital up until they were ready to bring him into the Operating Room. Nurses and doctors kept coming on and out of his room and were good distractions with their many questions, medications, and directives. The IVs were put in and the hospital gown was put on. It was Jim’s second time as a patient- the first time was his birth. He looked so vulnerable in the hospital bed and I commanded myself not to cry. Finally, it was “show time” and after giving Jim a final hug, prayer, and a kiss, I was whisked away by one of the nurses. She directed me to the surgical waiting area for families, where I would remain for almost 11 hours ( it took that long to make the transition from the recovery area to a patient room on the floor). It was going to be a long day.

It was during this agonizing wait that I felt the prayers of so many the most. Extended family and friends sent their prayers and love to Jim and I constantly during those long hours. We received so many texts and phone messages of encouragement, along with social media support. The love and hope was so overwhelming and soothing. Two friends also sat with me for a while during the surgery and recovery. God knew what both Jim and I were going to need well before we did and He graciously provided. The surgeon’s report post surgery especially was music to my ears: everything went well/ as expected and he was cautiously optimistic that surgery would be curative. The pathology report would come back within 10 (long) days. More hope and prayers…

In the meantime, Jim’s surgical recovery from colon cancer was truly nothing short of a miracle. I was flabbergasted to see him sitting up in bed just hours after surgery. He was able to walk the floor for over 10 minutes the very next day- unbelievable! While both of us had laparoscopic surgery for our respective colon cancers, there have been major improvements in the pain management post surgery over the past decade. Jim requIred only Tylenol for his pain after the first day and discontinued it’s use by the third day. He was discharged in 3 days versus my 8 days in the hospital. I couldn’t believe it! The nursing care that Jim received in the hospital was truly outstanding as well. All things considered, Jim had the best case scenario for a cancer surgery.

Home is where the best healing takes place, so Jim was able to sleep a lot last week once he was back in his own bed, as it’s virtually impossible to do so in the hospital. He slowly started to introduce more solid foods into his low residue diet with each passing day without incident . One miracle after another kept happening- his recovery was so amazing to behold! I was so proud of Jim’s strength, positive attitude, and faith during this challenging time. I believe that it was his “ attitude of gratitude” that inevitably resulted in his successful recovery, along with the prayers of so many!

Finally, the long-awaited pathology report arrived- 9 days after surgery. This is quite common, as the pathologist must be 💯 accurate with a diagnosis, but it was nerve-wracking nevertheless.. Fortunately, we were so distracted by Jim’s awesome recovery, that we didn’t think about the pathology exclusively. When Jim’s surgeon told him the wonderful news a few days ago that his surgery was curative for colon cancer, my heart literally skipped a beat! The elation that followed was indescribable…the release of tears and stress were so incredibly cathartic. We were beyond grateful and know just how blessed we truly were and still do…Jim and I are the lucky ones. We know this happy ending is not everyones story. Cancer has tested us, humbled us, and has also literally brought us to our knees in fear. It has also warned us to make sure we have our priorities straight. Cancer has also shown us just how powerful of a weapon prayers are against it! Cancer is no match for the compassion and love of others who support you in your time of trouble- we experienced this first hand too!

I pray that a cure for cancer will be found in our lifetime. New treatments are constantly being added to eradicate this menace, so there are many reasons to remain hopeful… In the meantime, preventive medicine is vital and provides the best possible outcome for a “cured” status, so please, don’t “skip the scope” if you are due! Baseline colonoscopies now begin at age 45 for colon cancer- it remains one of the most curable cancers when caught early.

Signing off with a very grateful heart- until next time, thanks for sharing this journey with us- it’s officially a wrap! 💙💙💙💙

The latest colon cancer survivor! 💙💙💪🏻💪🏻

Brian’s Hero (Mine Too!)

While I sometimes don’t recall specific details of recent events, I do remember the names of every single one of my teachers from first grade through high school. I admit, it’s amazing that I would still know this information over 40 years later, but there is a reason for it. From an early age, there were certain teachers who absolutely instilled within me a love for learning, especially for reading, writing, and later on, Algebra 1 and 2. Those individuals ultimately inspired me to become an educator myself, before having Brian, but after my stints in the airline and pharmaceutical industries.

I had always looked forward to going to school to learn new things and remembered not only what my best teachers taught, but how they made me feel. Of course, not every teacher was stellar and those individuals also stand out. In fact, there were some who clearly did not belong in the classroom at all and were tormented daily by bored students who would inevitably disrupt the class. Naturally, there was also everything in between. Most of us could certainly share the good, bad and ugly of our educational experiences during our time in school and how these things shaped our learning and views of the world for the better or worse. School was supposed to prepare us for the real world and provide us with skill sets that would be necessary for employment. I’ll always remember my Dad saying to make sure to select a major in college that would translate into a job after graduation. It was very practical advice and ultimately I studied special education. Little did I know way back then how very practical that decision would be later on when Brian was born…

Speaking of special education: it’s one thing to be a student of its curriculum, a student teacher, and then a special educator in the public schools for mild learning disabled students, (which I was for 5 years). It’s another thing entirely to have a severely disabled son who would ultimately require a private program for students on the autism spectrum. I am now in a foreign country and don’t speak the language. I never learned the terminology in college ( because it didn’t exist at the time). Instead of being a teacher of disabled students, I am now the mother of a special needs son. It was definitely above and beyond my ken and pay grade. The learning curve was quite steep, arduous, and relentless when it came to dealing with the school district(s). The process could be so frustrating and was meant to wear one down, with the hopes that you will give up on what your child needs. To that, I would eventually learn to say: Hell No! 😡

Sure, as a special educator I had attended many IEP meetings for my students, in fact, I had written a good portion of each IEP document, but nothing compares to actually having your own disabled child in special education. How strange it was to be sitting around of the table, listening to other professionals talk about your child, instead of the other way around. Those initial IEP meetings were difficult, heart wrenching, and often overwhelming. I realized that I had so much to learn as far as advocating for my son was concerned and the resistance from the “powers at be” was real. It would take time to figure many things out, coupled with copious doses of patience and fortitude… Is it any wonder why special needs parents often get defensive, especially when advocating for things that shouldn’t be so hard to get and that their children need and are entitled to? Argghhh!

The success or failure of IEP meetings and the educational experience in general, rested heavily on the teacher’s shoulders to advocate for their students . I recall that being true for myself and this was certainly the case for Brian’s teachers as well. Just like us, our kids have also had excellent teachers, educators who were horrible, and those in between. I can definitely count on my one hand those excellent teachers who have truly stood out in Brian’s educational experiences. They are his heroes and mine as well. I have an understanding of what it must take to teach our special kids, each one with their multiple needs, and am awe of how those wonderful teachers and their staff persevere. I know I couldn’t do what they do daily in their classrooms to ensure that our kids learn.

Conversely, there have certainly been a few awful teachers who gave up on Brian, which is the worst.. One teacher in particular was only in touch with me whenever there was a problem, despite my attempts to support her efforts so that she could help Brian learn . Finally, one day as she was relating another negative incident regarding Brian’s behavior, I interrupted her in exasperation demanding to know ONE good thing that Brian did that day at school: she really couldn’t think of one. She wasn’t getting him and even worse, she ultimately didn’t care to- it broke my heart. No wonder Brian wasn’t so thrilled to go to school that year- he also could sense that this teacher didn’t want to help him, even though he couldn’t tell me. It took Brian a while to regain his enthusiasm and desire for school and learning after that experience.

Unfortunately, many of our special children have had similar experiences, which have the potential to taint our perception of special educators in a negative way. I had to remind myself of the good teachers and staff in Brian’s educational history over the years and focus on getting Brian more of the same which ultimately happened, thank goodness, but you never forget the scars inflicted on your child or your heart when it happens. These are the things that create tough Mama and Papa Bear Advocates. A bad school year also helps one to appreciate the better school years when they do happen because of those special teachers who understand our kids and help them to learn: what priceless gifts they are!

There is one particular outstanding special educator who has made all the difference, along with her staff, resulting in Brian’s great progress this year. To say that I’m elated would be an understatement! Her role as President Of Team Brian and her ability to teach, inspire, and support her staff, students, and parents is the stuff that true legends are made of. Ms. Sam is simply an outstanding special educator and one of the kindest human beings I have ever known!

During Brian’s 16th annual IEP meeting yesterday, Sam demonstrated leadership in an engaging, professional way. She set the tone for the meeting and communicated her points clearly. Sam highlighted Brian’s progress with great pride, but also highlighted areas of need. The meeting went so well because it was fair, balanced, and celebratory. Even the case manager said it was one of the best meetings that she ever attended ! Sam is a realist and an advocate for her students; she has expectations for them and will do what it takes to ensure follow through. She is a wonderful collaborator with both her awesome classroom staff and the families. Sam’s willingness to listen to my ideas and address concerns has resulted in Brian’s progress this year. Furthermore, Brian LOVES to go to school and is happy when he gets off the bus- further confirmation that he is truly happy in school! It’s truly every parent’s wish and hope for their child.

It’s hard to believe that Brian has just 3 more years of special education left. Where did the years go? Hard to believe and even harder to contemplate that he will graduate in 2025. I don’t like to think about that part too much, as it will be a very bittersweet milestone, I’m sure. Another reminder that life goes on and things will inevitably change whether we want them to or not. No, I will not go there. Instead, I will choose to focus on the here and now and bask in my son’s school successes, made possible by a wonderful teacher and her staff. I look forward to what the next school year will bring for Brian and anticipate his continued progress. I am thankful for Team Brian and all that they do to help my son be the best that he can be. The best is yet to come!

Until next time, thanks for reading! 😊

Brian and his wonderful teacher, Ms. Sam! ❤️😊👍🏻

Rest and Retreat

All parents need a break from the challenges of child rearing from time to time. It’s the most rewarding and exhausting “job” that a parent will ever have! This is especially true when children are very young and dependent on Mom and Dad for literally all of their needs. With this in mind, imagine what it would be like to have a “forever toddler” to raise, where it’s literally days, months, and years of the same needs that demand your attention, energy, and focus.. Sure, there are certainly gains in independence of skills, whether partially or fully. Progress does happen, albeit very slowly. Yet, there will always be some level of parental assistance and supervision required. There will never be a full detachment from oversight and follow through to make sure that your son or daughter completes the task(s) at hand.

Just think about all of this for a moment…You may wonder how is it possible for parents to keep this momentum going for their children indefinitely? The answer to this question is: it’s impossible! No one can sustain such a pace for years without dire consequences. However, this is exactly the story for most special needs parents and their children. They need a break so badly and often can’t get one. It’s an international problem that exponentially gets worse over time, especially as more disabled children get older, along with their aging parents.

I am one of those “full throttle” Moms, who keeps on keeping on, making sure my special son’s needs are met to the best of my ability, leaving no stone unturned. It takes a tremendous amount of coordination and effort to make things happen for our kids. We are negotiating/ advocating for them constantly from the moment they are born until the day we parents are no longer here. Raising special children is often like a race, instead of the marathon that it was intended to be. Sometimes this is because resources are limited, so we don’t want our kids to miss out, so the early bird does indeed get the worm. Other times it may be that our guilt is in the driver’s seat, pushing us to proceed in our mission to help our children, regardless of the price we may personally have to pay for our actions.

This is especially true after years of persistence and determination to ensure our kids are provided for. While extremely admirable, we may or may not notice over time that our energy levels are often depleted and we may become irritable and overwhelmed. Some mornings when we get up, we just can’t face another day of the same exhausting and repetitious routine with our special children. We have finally hit the proverbial wall- we are desperate for a respite! We hang our surrender flag out the window, hoping someone will respond to our call for help.

I am in great need of a respite right now and saying so “in writing” is actually a relief. I don’t know why I sometimes feel that this is a “weakness” to admit that I’m not a super human, as of course this is crazy and irrational. I think it has to do with the unrealistic expectations that I have of myself and proves all the more just how much I need a break. It’s been a year since I have had a long weekend to myself and I truly enjoyed every second of it, once I “ transitioned” and adapted to a new normal. I realize in these type of moments just how much I am like Brian, who also struggles with transitions, but eventually settles in. Perhaps he is more like me than I thought.

I am extremely fortunate to have my wish come true, as I will be going away for 4 days, starting tomorrow through Monday. I will be joining a group of other special Moms at a retreat inn out of state and out of reach of all responsibilities that have to do with Brian, (and life in general). This amazing gift is made possible by A Mother’s Rest ( a non profit organization that supports special needs Moms) at The Terrace Guest House in Maryland and my good husband. Jim is able to work from home and care for Brian while I’m away. They are best buddies and are planning to do “guy stuff” while I’m gone . I’m sure that they will have the time of their lives, as a matter of fact, I’m even more positive that a certain part of them will be happy when I go, lol. But there is a certain amount of truth to that, as we will all need breaks from one another, no matter how much you love your family members.

As I write a to do list for Jim regarding what Brian will need over the 4 days, I am reminded just how much Brian still requires, reinforcing my resolve even more to take a break from everything. I impress myself sometimes with how much and how long I’ve been keeping this pace for my son, but as I get older, I know that I have to start making modifications. I don’t have quite the amount of energy that I used to have, so I need to use wisely what does exist for both Brian’s benefit and my own. I believe this getaway weekend will renew my spirit, my mind, and my body, which is in desperate need of some deep sleep. It’s the little things that truly make all the difference. Achieving these goals of rest and relaxation will enable me to resume with motherhood when I return home on Monday afternoon.

Many special Moms I know would love a break after years of caring for their disabled children. Sometimes they don’t know how to ask or who to ask. Sometimes there is no one to ask. It’s sad and exhausting, so when rare opportunities like A Mothers Rest comes along, they need to be grabbed as quickly as possible for the parents who need it so much. It’s the perfect opportunity for family and/ or friends to step up and help out if possible . Perhaps a weekend away is not feasible, but an overnight or an evening out is a good place to start… For friends and family members considering a gift for a special needs Mom ( and Dads too): think about the gift of your time with their disabled child so that they can have the gift of free time for themselves. It may be the most wonderful present that they will ever receive.

Of course I will miss Jim and Brian this weekend and maybe even be tempted to check in frequently, like I have done in the past during other times away. But I promised myself this time it’s going to be different. I am making this time for myself selfishly and unapologetically all about me. I will make a daily call to get a status update and of course, will be available anytime in case of an emergency, but otherwise, please don’t call me unless there is blood or a broken bone. Everything can and will have to wait until I return home on Monday. This is the best self care gift that I can choose to give myself and I don’t want to miss a moment of this rare opportunity that has presented itself. I am worth it and so are you! Carpe Diem!

Until next time, thanks for reading. 😊

Musings On Motherhood

Being a Mom has been one of the greatest joys of my life, though I didn’t always feel that way…My dream of what motherhood would be like prior to my son, Brian’s arrival into the world and the actual reality when he came, were two entirely different things. Taking on the role of motherhood was nothing like I imagined it would be, especially in the beginning of the journey. I was quite frankly very overwhelmed and afraid. Brian had been born with Down syndrome and those moments immediately following his birth were anything but celebratory.

The atmosphere in the delivery room was very somber, with undertones of sadness, overshadowed by a sense of urgency. Suddenly, Brian was whisked away by a group of neonatologists just moments after my husband, Jim, had held Brian for the first time. These specialists were quietly gathered in the corner, speaking in hushed tones while examining our son. I knew something wasn’t quite right, but what was it? I felt so helpless and devastated as I lay on the operating table post C-section, trying to wrap my brain around what was happening in real time..Tears were copiously flowing, while I silently mouthed a prayer to God, begging Him to spare our little boy from any complications or disabilities.

My obstetrician ultimately confirmed my worst fears by informing us that Brian had Down syndrome and was not going to be a typical baby. He would indeed have special needs, as well as medical challenges. I was already aware of the hole in the center of Brian’s heart at 18 weeks in utero, but I had hoped that this was all he would have to endure. I remember asking God, “ why, Lord?” as I was brought back to my hospital room after the delivery. I kept thinking how exactly would Jim and I rise to the occasion of being Brian’s parents? What kind of life is he going to have?

Numerous scenarios kept playing out in my head, fueled by fear and grief. I had never been so scared in all of my life. It seemed like raising Brian was going to be an impossible task and this was just the beginning of the journey! Yet, I kept going back to those first initial moments when Brian was literally pulled out of my womb, and the first cries of his arrival were loud and clear. Once he was cleaned up and handed over to Jim, I saw the most beautiful baby, wide-eyed, lovely rose bud lips, looking intently at his Dad. Their sacred bond was already established in those initial moments of Brian’s arrival into the world. I was petrified of what the future held, but knew deep in my heart that somehow God would work everything out in Brian’s life ( and ours) for good, despite my fears and disbelief. I chose to believe that God would always be at the helm of Brian’s life, providing for all of his needs. He only asked for Jim and I to trust Him, especially in our knee deep fear of the unknowns in Brian’s life, as well as in those difficult things we knew would inevitably happen as a result of Down syndrome.

Over time, we constantly saw evidence of just how faithful God was and continues to be in Brian’s life, even to this day. Jim, myself, and Brian have been richly blessed, more than we could have ever imagined, by resources and individuals who have helped us to help Brian lead a good life. The Lord has also been our refuge in very difficult times with Brian, carrying us through some tumultuous challenges that we could not have faced without Him. It is God’s grace and and never-ending love that has given us the courage and resolve to face our difficulties both in Brian’s life, as well as in our own lives. Throughout it all, I have been able to experience a very loving bond with Brian, the very thing I feared would never happen due to his disabilities, but God answered that prayer as well.

Fast forward to almost 19 years later and so much has changed, yet lots of things have also remained exactly the same. There have certainly been and continue to be many difficult mountains for Brian to climb, especially with a secondary diagnosis of autism. But our brave son faces each one of his challenges with the most incredible persistence and grace that I have ever seen. Brian is a wonderful and loving young man who is beloved by all who know him. His hugs are legendary and his pureness of heart is always apparent. At school, Brian is known as Mayor McDonnell and with our beloved church family, Brian is the Joy Ambassador, the unofficial greeter at most Saturday Masses. Jim and I are so proud of Brian, he is a wonderful example of God’s perfect love that endures all things, never judges, and is totally accepting. I have become a better person because of my son and continue to learn a great deal about virtues, such as compassion and goodness, through his daily examples.

As I reflect on all of these truths as Brian’s Mom, I have certainly come a long way from that late August night in 2003. God gave me the most precious gift in the hospital that fateful evening. It was hard for me to initially see, but in His time and through Brian, I have experienced the greatest love and have met some of the most amazing people. Life has truly been extraordinary! I have also learned through both my failures and successes how to be the Mom that Brian needs me to be for him. It is definitely not easy, as the multiple challenges of raising a disabled son can be quite difficult, but it is always worth the effort.

I still wish Brian didn’t have to go through so much, but I try to remember how faithful God has been and will continue to be for the rest of Brian’s life, especially when I experience those dark moments of doubt. I have been given the privilege of being Brian’s Mom and the honor of raising him to the best of my ability, a role that means the world to me. It is a gift that continues to grow with time and love and I wouldn’t have missed it for anything in the world! Thank you, Son, for making me a Mom, I love you with all of my heart! 😘❤️😘❤️😘❤️

You Don’t Know Until You Try

Life is an adventure and is often filled with unknowns, risks, and getting out of our comfort zone. It can also be quite mundane, repetitive, and painfully slow, in fact, I believe I have actually seen grass grow while waiting for certain things to come to fruition… Such experiences also describe precisely what it is like to raise a child with special needs. More often than not, this journey for most of us is the latter. We wait years for our disabled children to accomplish certain goals. We often wonder exactly how much longer they are going to remain in the Land of One or Two Step Directions.. We parents, like our kids, are so used to the repetition of routines and behaviors, that literally any little change can even throw us completely off guard. We adapt to our own version of “normal” in our special needs circles and homes so much so, that sometimes we forget there is a whole, big world out there to explore. The very thought of new adventures is exciting and simultaneously frightening. It also involves huge planning , coordination, and risk taking. We may fail, and it’s certainly easier to stay home, so perhaps it’s best not to rock the boat. Yet, how will our kids grow, become part of an inclusive society, or just be exposed to new things, if we don’t try?

As Brian and I grow older, I realize how important it is for both of us to expand our comfort zones as best we can, when we can. I feel some of the best gifts that I can give to my son are various life experiences that will engage him, help him to learn, and provide him with inclusion opportunities so that he can also experience life to the full, liberty in all its forms, and the pursuit of happiness, just like the rest of us. How fortunate Brian and other disabled individuals are to live in a time where most people are accepting of others with disabilities. While things are certainly not perfect, Brian is able to do things that were out of the realm of possibility even a few decades ago for special needs folks. There is still much work to be done, but all things considered, I think Brian would agree that his life has purpose, joy, and beauty because of the huge village that supports him, as well as the experiences he has been exposed to, both in good and bad times.

We decided to totally break out of our comfort zone and return to Dallas last week during the Spring break. My husband had company business for a couple of days, so Brian and I were left to our own devices with the rent-a-car to “tour and explore” various adult special needs programs that I had contacted and set up appointments with previously . I was excited and very anxious at the same time, both looking forward to seeing what would be potentially available to Brian after graduation, while dreading how he would handle the many transitions during our stay in Texas. Admittedly, it was going to be a LOT of new/unfamiliar places, people, and things for him to take in during our 6 day stay. It was expecting a lot from Brian. I already knew from previous experiences how he reacts in these new situations, so a part of me definitely wanted to be back in my NJ Comfort Zone, where it was mostly peaceful and uneventful. Yet, there was also a part of me that was determined to proceed, despite the outcome, whether it was the worst or best idea ever. It was a risk too good not to take. We had also allotted research, money, and time into this trip, so it was too late to turn back.

I decided on our first day on the road in Texas to acknowledge, then ignore my anxiety by focusing on my driving on the Dallas highways. These roads definitely had my undivided attention; thank goodness for Waze and The Beatles to keep both Brian and myself calm. Brian did scare me to death during the ride to our first tour, however, when he opened his door while I was driving 70mph on the turnpike! Luckily, no one was behind or beside us- that in itself was a major miracle! You can be sure that the car doors were super locked from that point on! As predicted, transitions out of the car to a new place were difficult each time. I had to be extremely patient, hold my breath, and wait Brian out and eventually he would decide that he was ready to enter a new building. After that, he was totally fine, in fact, much to my delight, he was quite engaging with whomever he met, once he settled in. I was so proud of him and was reminded in those wonderful moments last week why it is so important to push our kids and ourselves to try new things: the rewards are often great and it gives our kids new opportunities in life that will help foster their independence.

We learned a lot about the adult programs that we saw and the staff /clients certainly learned a lot about Brian and I. It was a wonderful information exchange and so great to be in the company of caring/knowledgeable staff and endearing clients. Brian was included and treated like a special guest: he responded voluntarily by communicating with staff and even a few clients with the Proloquo speech app on his iPad mini. Brian introduced himself several times via Proloquo who he was, his age, where he lived, where he goes to school, and most importantly, what he wanted to eat, lol! It was such a blessing to see Brian interacting with new people and genuinely enjoying it.. He initiated waves and handshakes with his new friends, where ever we went. Overall, Brian did really well in these new environments and any challenges that arose were entirely predictable. He is maturing, growing up, and seemed to thrive on these new opportunities as much as I did. Most importantly, these successful moments in Dallas gave me the reassurance that Brian will always continue to learn and adapt, despite the transition difficulties and other challenges that he will face in his life, no matter what, because he has shown that he is capable of doing these things. He will make his own way, in his own time, just like he always has- I really needed this important reminder!

I also believe God knew that I needed to see concrete evidence of just how far Brian has come last week compared to the beginning of our journey…Those early, heartbreaking days when we were prisoners in our own home due to severe sensory overload were so excruciatingly painful…I thought we would never see the sun again…I felt helpless and hopeless for a long time as I watched my boy struggle with so many challenges, yet, behind the scenes, God was actually creating something very beautiful out of the ashes of our brokenness and pain. Over time, I would come to understand and see the rich tapestry of our lives with our special needs son, including the many knots and not so pretty colors, interwoven with a beautiful pattern and spectacular colors throughout.

When I choose to focus on those beautiful colors of my life’s tapestry, I see just how blessed I have been to experience so many joyful moments, to see Brian triumph, etc. despite the pain and heartache in this life that is inevitable for all of us. Choosing wisely and trusting God for all of the details in my life, especially the scary ones, ( like Brian’s future) enables me to experience the joy and appreciation for the good in this life right now, in this very moment. Otherwise, it’s just too hard and I end up missing out on many precious times in the present because of worry and fear- I have definitely been there and have done that many times! I still struggle with fear and the unknown, so I continue to make a daily decision to hand over ALL of my problems and concerns to God and trust Him for the outcome. He is ALWAYS faithful and has richly blessed me, despite my doubts and objections that His timing is often too slow for my liking, lol. When I look back at God’s track record in my life, He has been incredibly gracious to me.

Whenever I need a role model for total faith and complete trust, I need look no further than to Brian. He, like all special needs children, is a shining example of daily faith in action: Brian trusts wholeheartedly that all of his needs from sunrise to sunset will be taken care of. He has great faith in his family, teachers, volunteers, and caretakers that he will be provided for. He never doubts or questions any of these things. Brian just gets on with living his life, step by step, with amazing grace and tremendous courage. He is my hero and inspiration to live and love in the literal moment, allowing us both to enjoy and deeply appreciate all good gifts from Heaven. I don’t think it’s a coincidence that Brian was given specifically to us. Our lives are indeed filled with struggles and unknowns and always will be..But there is also great hope, joy, and evidence of God’s goodness in the midst of our challenges, to sustain us and encourage us. I will continue to take my cue from Brian and others like him to see and know that taking risks, like they do, is well worth the rewards that will follow.

Until next time, thanks for reading!

Good Grief!

Grief is a natural part of life that will happen to each one of us as a consequence to a major loss. No one escapes grief, though we may think we can outsmart it by distracting ourselves. We may try to avoid it’s painful sting and the fall out that will occur as a result of it’s presence. And we may be able to keep out running grief for quite a long time, but, eventually it will win. Ironically, accepting grief on it’s own terms is actually what is needed in order to heal and move forward. However, it will take a tremendous amount of courage and strength to transform grief into healing.

This process is absolutely exhausting and some days, it will seem like we are not making any progress at all, like we have reached a final plateau with no change whatsoever . If we are willing to do the work, we can eventually experience healing, though our scars will always remain. We will never be exactly the same as before our losses, but this is not necessarily a bad thing… We may have also acquired a greater capacity to love and demonstrate compassion for others and ourselves when we come to the other side of our grief. We realize we can still live our lives fully, even if we can’t return to the past.

I have learned in my own life that grief is not restricted only to the passing of a loved one, though this is certainly the hugest loss that one can experience. Grief can also encompass the loss of hopes, dreams, or major disappointments in life that were totally unexpected. We made our plans and were confident they were going to work out, but in the end they did not. A sudden change in circumstances beyond our control totally eliminated the outcome we hoped for, despite all of our best efforts. An unexpected illness, financial disaster, a broken engagement, divorce, infidelity, a son/daughter addicted to drugs, or having a child with special needs : these are just a few of life’s major events that can cause intense grief and feelings of major loss. Since grief is inevitable at some point for all of us, what can we do the day it knocks on our door? How will we learn to live with and learn from grief in order to eventually move forward when we are ready?

Brian’s arrival into the world was a mixture of intense love and grief for me. It’s never easy for parents to hear that their baby was born with a disability. Yet, there were signs during the pregnancy that things were not quite right. During the final 4 weeks while I was on bedrest in the hospital, I had a lot of time to think about Brian, be scared, and simultaneously hopeful. I just knew in my heart that he was going to have special needs, but believed that we would be empowered to raise him as best as we could , even if we didn’t understand exactly how. This is precisely what happened, but the grief was still quite intense when the harsh reality set in of what Brian’s life journey would entail.

Life was not going to be like what we had hoped for Brian. We knew there were going to be many challenges, though we didn’t fully understand to what extent in those early years- (perhaps there is a good reason why the future is not revealed to us after all… ) I grieved the life opportunities/milestones that Brian would never have and the medical and educational challenges that he would face…The fear of Brian’s future loomed over my head like some ominous black cloud to the point of distraction where I missed precious moments in those early weeks. Grief held me prisoner and life was just a big blur of feedings, diaper changes, and doctor appointments. The loneliness and isolation felt never ending…

Fast forward to early intervention, special education, a move to our current town almost 15 years ago, a special Mom’s support group, recreational activities, and coming to know other special families over the years: all of these things have collectively helped Brian, my husband, and I in many wonderful ways. Brian continues to learn and so do we, from so many other special families , especially those with older children, as well as those doctors, teachers, therapists, camp counselors, and volunteers.

Our lives have been enriched by these connections and if it weren’t for Brian, we would have never met the awesome individuals and families who have made such an impact and difference in our lives. We are truly grateful for all of these blessings and I believe God planned it this way all along…Despite all these gifts, though, the grief of Brian’s disabilities still remains and I believe it always will. Perhaps it’s not quite as intense as it once was, but there are reminders or triggers that can set off my grief, sometimes at the most unexpected times or ways. Moments when I will say to myself: “ you should be over the fact that Brian will not have a girlfriend, live on his own, or have a job by now”! I know this intellectually, of course, but the 18 inch journey from the head to the heart can be a very difficult one. Grief has no expiration date and is often an unexpected visitor – only time can mitigate its effects, and even at that, it can sometimes be as intense as the first time, even several years later..

I have learned to finally accept grief after resisting and fighting it for so long. The alternative was illness, lack of sleep, not taking care of myself, etc. I will never like grief, but I accept it now as a part of life and know from my previous experiences that I will get on the other side of it. I may be heartbroken and bruised, but I am also more resilient, and in touch with my life and feelings, as opposed to being shut down and detached from life. I know in order to heal and move forward, I must be willing to acknowledge my grief, feel the feelings, and allow God to do His work in making me whole again through the tools/ resources that He has provided.

One of the tools that has been invaluable in my grief recovery is similar to the 12 Steps that are the hallmark of groups like Al-Anon, when families and friends have been profoundly affected by a loved one’s addiction. I discovered one day when I substituted “Brian’s disabilities” for the actual addiction, the impact and truth of the first 3 steps were just as powerful:

1. “We admitted we were powerless over Brian’s disabilities-that our lives had become unmanageable.” This is my “admission” step: I can help Brian, but I am powerless to change the reality that he is disabled, as much as I would like to. When I initially had a very difficult time accepting this fact, my life indeed became extremely unmanageable to the point where my physical and mental well-being were significantly affected. Self care was non existent, sleep eluded me, and despite my desperate efforts to control every aspect of Brian’s life with interventions, nothing was going to change our reality. A long period of grief finally provided the breakthrough that I needed- on my knees!

2. “Came to believe that a Power greater than ourselves could restore us to sanity.“ This is my “awareness” step. I finally recognized that I was unable to manage Brian’s special needs on my own and would always require support. I also knew that I was driving myself crazy up until this point thinking I was responsible for EVERYTHING as it pertained to Brian. I had become obsessive and was insane with worry and fear, knee deep in my grief..I believed in God, but forgot that He actually wanted to help, if only I would let Him.. It’s not easy letting go of what we think we can control, for that is our human nature and we live in a world that loves self- reliance and control. While there are certainly situations that warrant these qualities, no man is ultimately an island, and each one of us will need help, especially in long term situations. I came to understand that Brian’s well-being and success in his life does not rely exclusively on my efforts alone- it was an absolutely insane premise to begin with. What a relief when I finally let go of this heavy burden- it felt like a huge weight had finally been lifted off of my shoulders!

3. “Made a decision to turn our will and our lives over to the care of God as we understand Him”. This is my “acceptance” step. The challenges of special needs parenting are not my alone to bear. God has and will continue to provide the people, places, and things that Brian needs, in His time.. I am asked to trust Him for all of the details, even when a situation seems very uncertain and especially when God is silent, which can be very hard…But, God has been and continues to be faithful to Brian as evidenced over the years by His goodness. My Higher Power has an excellent track record of provision, often giving even more than we expected, so this is how I have learned to trust Him, especially in dark seasons and times of grief. I know I never walk alone, nor does Brian, and we never will…It is a relief to know that God cares enough about every detail of our lives, even our grief, and that we will never be abandoned in those dark seasons of sorrow… We will eventually come out on the other side of our grief, with new strength, wisdom, and a compassion that we never knew possible, as well as the ability to live the full life that was intended for us. These are unexpected gifts from grief that can happen with God’s help, especially when we are willing to trust Him for everything, including our grief, sorrow, and daily provisions. I’m glad that I’m not in charge!

Wishing you and yours provision, peace, and hope during your time of grief; may you experience the love and compassion from The One who is faithful and will see you through to the other side, no matter what..

Until next time, thanks for reading! 😊

Take Care Of Yourself!

Walking a mile in someone else’s shoes, gives us insight into our own, as well as others lives. This wisdom will effect how we respond or query when it comes to how another person decides to live his or her life. Hopefully, our experiences will also teach us to be respectful of others, even if we don’t always agree with or understand their choices. Everyone has the right to live their lives as they so choose, as long as they are not harming others. Life is hard enough for each one of us with the inevitable stressors and adversities that will come. For some, their share of hardships will well exceed those of other people, which is so unfair, and often unimaginable…

Everyone of us has a story: we come from backgrounds that still shape our personalities and perspectives today. Many of us have had to endure or are continuing to deal with major difficulties. We are mentally, emotionally, and physically exhausted. In order to endure the long term, particularly in the case of special needs parenting, we must choose those people, places, things that give us joy, acceptance, and hope, for to do so otherwise is not taking care of ourselves, and THAT doesn’t do anyone any good, especially our disabled son or daughter who count on us. They give us an important purpose, even if it comes at a very high price and all the more reason to live our best life.

I have 2 stories in my life: the “Before Brian” story, which was long and the current “Daily Brian” story, which will be for the rest of my life. Life was certainly different “ before Brian”. I worked in the airline industry for 4 years, then in the pharmaceutical/medical education industry for almost 10 years, went to graduate school, and finally became a special educator for almost 5 years, with an opportunity to live in Germany for 16 months in between. I was very blessed to have had different career opportunities and learned a lot from each one. There were freedoms, interesting parts, and mundane aspects of each profession. I met colleagues along the way who taught me so much and visa versa. I would not have changed a thing and am grateful for everything I learned in my jobs, I still apply my pharmaceutical and educational background today, as it pertains to Brian’s wellbeing. Little did I know then just how valuable my work experiences would be today…

Story #2 had a brief transition first of meeting my husband, buying a home, getting married, and having Brian all within 14 months. Talk about major life changes! Then open heart surgery for Brian at 3 months, a few more medical diagnoses by 2.5 years old, including autism, then moving to our current town for better special education services: all of it was like getting smacked in the head with a 2X4! I worked part time periodically after that both in medical education and early intervention, ironically enough, and battled colon cancer. Brian’s needs increased steadily over time, demanding more of my attention. My husband and I made a decision at that point that it would best for me to be home full time to take care of Brian and our home. It was a decision that made the most sense for our situation and still does today. There are pros and cons to both working outside or inside the home, but I know that I have done my best most days for Brian and can focus on what he needs because I am home. This personally gives me peace of mind and is worth the sacrifices I have made to help Brian live a healthy/happy life, at least most of the time . I consider such outcomes to be the most important thing that I will ever do with my remaining time on earth. Yes, it is very hard and often a struggle, but I wouldn’t change a thing.

Of course not everyone has the ability or desire to either work or not work outside of the home due to financial circumstances or personal preferences. There may be other children in the family besides the disabled sibling, or health issues, other preferences or priorities. Each family knows best what works for the them. I believe being a stay at home parent of a special needs son is just as important as parent who works outside of the home: Both positions have purpose, both necessitate multi-tasking, both jobs can be relentless, and both require endurance. I do not derive my self worth from working outside the home or not- having been on both sides of the fence, I would say both experiences have been equally important in shaping my opinions, experiences, and ideals, but that is separate from who I am as a person and how I view myself. I place much more value on my relationships than my work experiences, especially with family and close friends, for in the end, they will matter more than any job promotion.

Some people may assume that because you are a stay at home special needs parent you aren’t up to anything constructive, but nothing could be further from the truth. I periodically have people ask me what I do with my time. I would love to video tape what a day in our home looks like, so they can see! A disabled child requires many things: help with self-care/ activities of daily living, plus advocacy: medical appointments, phone calls, endless government or camp forms, shopping, constant communication with the posse of people involved in his/her life. There’s also planning your disabled son or daughter’s social life/ recreational activities and being there for every one of them. There are no weekends off. And don’t forget the house, for someone has to shop, cook, clean, and do the laundry. After telling one friend all of this a while back, she said she would much rather go to work and considered that to be easier than being home. I tend to agree with her assessment, especially on certain days for sure! It’s all a matter of perspective and our own personal experiences. There is no right or wrong, no matter what side you’re on, both are of equal value and are important.

What’s most important is what we do on our own side of the fence: how do we juggle all of our responsibilities, while simultaneously take care of ourselves? It’s really hard to do so, but over time we see that what we once perceived as a luxury, is actually an imperative: self care. As a former flight attendant, I was taught in training that adults have to put on their own oxygen masks first, before helping others. This is a fantastic analogy of the special needs parenting experience: if we really want to help our children and be around a long time for them, we must take care of ourselves. So, in my case, that could mean going to the gym, meeting a friend, reading a non-special Ed book or taking a nap when I do have an hour or two before Brian gets home from school, for then the second shift begins…I used to feel guilty about this, but as Brian nears 19, and as I get older, I can’t get enough of trying to make time for myself when possible. It’s the best gift that I can give both of us and has become a necessity that I can’t live without anymore.

Wishing us all many self care opportunities that will restore our physical, emotional and mental, well being, whether they are brief or extended, and without self guilt or disapproval/approval from others- we know our personal lives best, what works for us and what we need- we are worth it , so work it! 😊😊😘😘❤️❤️❤️❤️❤️

To My Immortal Beloved

It’s been quite a while since I have blogged on Marvels and Moxie. Life goes on with its many distractions and time continues to slip away at an amazing speed…Usually the focus is on Master Brian and all of his trials and tribulations, but on the eve of his Dad’s birthday, I don’t think Brian will mind if the spotlight shines on his “Best Buddy” instead. In fact, I think Brian would absolutely insist on it, if he had any say in the matter. Jim is Brian’s hero and visa versa. They share a very special bond, forged together by years of challenges, late nights, uncertainty, and a deep love that has truly conquered all and always will. I am in awe and in admiration when I see my husband patiently and lovingly give Brian his attention and support. I see exactly where Brian gets both his deep capacity to love and his bear hugs from. They were destined to be in their roles of father and son, perfect together despite the challenges, each one the better for it…

Jim has always answered the call to step up in both the good and bad times in our marriage, as well as during the challenging times in Brian’s life. He is a reserved man who is committed and fiercely loyal to his family and friends. I have greatly admired his tenacity and it is from his strength that I have often drawn upon when the chips were down during some pretty tumultuous times. There have certainly been times when we as a couple, and a family, have been challenged to the point where I wasn’t sure if we could carry on, but my husband was always the one to believe that we could.

Of course, he, nor we, are perfect. We as a couple, and together as family, continue to make mistakes, learn from them, and try to live our lives with appreciation and joy. We have been blessed to create a life with purpose and meaning, with God as our guide, trusting Him for all of the details, even when it doesn’t make sense or is unfair. More often than not, we are able to find love and beauty in the people, places or things that God places in our path. We continue to be a work in progress and always will be. I’m grateful that my husband is strong enough to answer the call of what is expected of him daily and never gives up, though it would be understandable if he felt like it sometimes, I know I certainly have from time to time! Life’s challenges are hard, relentless, and all encompassing, especially when raising a disabled son. It is a life long marathon that is truly not for the faint hearted! We can only handle things one day at a time, sometimes just one moment at a time..

If Brian had the words, I am sure this is what he would say to his Dad on the eve of his birthday:

Dear Dad,

You are my best friend and the reason why I have joy in my heart! From the moment you held me in your arms after I was born, I knew immediately how lucky I was to be your son. We have shared many fun times, hugs, and challenges. I know it has not always been easy for you over the years. Many would have given up due to the nature of my disabilities, but you have always been my loving advocate and hero. Thank you for all that you do for me! Thank you for giving my life purpose and meaning. Thank you for loving me as I am. I treasure our times together and always will! I wish you a blessed birthday filled with joy and happiness, the very same things that you give to me daily. I love you, Dad! Brian xoxo

Now my turn..

My Immortal Beloved,

As you approach your 61st time around the sun, I am reminded of how fortunate I am to call you my best friend. I love you and thank you for your great love for Brian and I. We are very different people, yet, identical in the things that matter most…We have tested each other, argued, and have been tempted sometimes to throw in the towel. We have also supported each other, loved one another, and persevered under incredible circumstances. Throughout it all, you have been my rock and strength. I am grateful for you and love your big heart! ❤️❤️ I am blessed to call you my “life partner” and wish you the happiest of birthdays that you so richly deserve. May we blessed to celebrate many more together.xoxoxo,Brenda