What I Fear The Most..

I was recently going through some old pictures of Brian when he was a baby and was reminded once again how quickly time has flown, despite many agonizing moments along the way when the opposite was also true. I can’t believe that Brian will be turning 17 years old this Summer- how did that happen?! These precious photos tell me otherwise as I look at them. I remember so well the story that accompanied each one like it was yesterday, forever etched in my mind. A mother’s joy and sorrow all wrapped into one heart that will forever love her beautiful boy who will always be a blessing, and who is also vulnerable in the world. As Brian is getting older, so are Jim and I . Quite frankly, I’m in deep denial about turning 59 this year. In some ways, it doesn’t seem conceivable, though my body often reminds me these days that I am definitely not the spring chicken that I used to be. My energy level is not quite the same, and my wrinkles are reminders of my years of too much sun on the beach without sunscreen, though I would prefer to view each one as “wisdom stripes”, earned by years of life experiences.

As young as I would like to think that I am or remain in my mind, the reality is of course, we all grow older and will eventually die. It’s the inevitable part of the life cycle that each one of us will face. This harsh fact often stops me cold in my tracks and invokes a fear like no other: when Jim and I die, what will happen to Brian? It’s the unanswered question that keeps many special needs parents awake at night; I have woken up in a cold sweat on several occasions because of this nightmare that I have dreamt about while in a deep sleep. It permiates my thoughts and actions and is the driving force behind what and why I do as much as I can for Brian now while I am still alive. My husband often jokes that perhaps modern medicine will advance to the point where one day, all of our body parts that have worn out will be replaceable and we will become bionic people, living to a ripe old age. While anything is certainly possible, the reality is, Brian will most likely outlive us and this truth literally scares me to death.

Why am I so afraid? Brian will always require a tremendous amount of support in order for him to live a fulfilled/ productive life and there are no guarantees that such resources will be available to him in the future after Jim and I are gone. Writing these words pains me so much to consider, even for a second, but it is the stark truth. Brian’s disabilities are such that while he does make his progress, and will continue to learn throughout his life, he will always need permanent and consistent support. Brian will always require help with everything throughout his day, and when you break that down, it can literally be hundreds of steps that are necessary in order to accomplish a whole host of tasks. It truly is mind- boggling and overwhelming when you think about all the steps a person takes to complete an average day.

Adult programs and residential facilities for the disabled are slowly emerging, but the need is so great and there are no guarantees for the right placement . There will be many disabled young adults in the near future who will require supports of various kinds, but there aren’t enough options right now to accommodate everyone. This is exactly why graduation from special education programs at age 21 can be so frightening, with such an unknown future ahead for many graduates. I try not to think about this point too much, as Brian still has some time left in school, but am certainly aware that graduation day will come. I hope to have a game plan in place before that time if at all possible.

I often pray that Brian will pass on before Jim and I. That may sound morbid or strange to some people, but the reality is, no one will ever care for your child the way you do. I realize how absolutely devastating this would be and I would be forever heartbroken. Yet , when given the choice, this would still be my wish. No one will understand all the quirks, nuances, strategies and what your special child needs, the way you do. No one will ever love your child the way you do. I have no doubt that Brian will experience a sharp decline across the board if we die first. I see how dramatic little changes can effect Brian, let alone a major loss. So, for these reasons, and many more, that would be my preference if I had any say in the matter, which of course, I don’t. Yet, in the meantime, I will try my best to take care of myself so that I can live to be a bionic old lady and at least know that I am doing everything I can to be there for my son.

How do I prevent this fear of leaving Brian behind from consuming me altogether? The answer is doing my best and trusting God for the rest. This is not easy and requires a daily declaration of faith that does not come naturally- at all! It is often a painful struggle and a series of “why” questions or “ how”… I don’t have the answers at all and sometimes all I have are my tears and broken heart. Yet, I have also seen doors open unexpectedly, opportunities arise, or people, aka, “angels” who were heaven sent just at the right moment to help us help Brian.

There is no reason to think that miracles wouldn’t continue to occur throughout Brian’s lifetime. In fact, I expect to see many more along the way! In the meantime, a willingness to try, to explore, to risk- all of the things that we special parents already do on a daily basis to help our kids is what is most important . I know I am happiest when I am busy helping Brian live his best life; it makes me feel productive and also gets my mind off of my fears and other things that I can’t control.

Like Brian, I continue to trust daily that somehow, someway, his needs will be met, not only in this moment, but for all of his remaining earthly moments. This is true even when I don’t understand how it will be possible, even when it doesn’t make sense, and especially when there seems to be no hope. Hope is what gives me the courage to face the good, bad , and the ugly in Brian’s life and always will. Without hope and faith, life is just too hard to manage on my own terms. I am glad that I will never be alone on this eventful special needs journey, no matter what comes, and that makes all the difference!

Until next time… thanks for reading! 😊

One

My Teacher, My Son

We parents can never give up on our special children, for they will always count on us, but this charge comes at a huge price… Once upon a time, long before having Brian, I traveled to many places, lived in a foreign country, and had a lifestyle that afforded me many freedoms, that at the time I took for granted. I came and went as I pleased, being accountable to no one but myself. If I didn’t like a situation, whether it was a personal relationship, a job, or any life experience, I simply moved on. The world was my oyster back then, so I made sure that I lived my life to the fullest. It was a season in my life that I will always look back upon very fondly.

I have no regrets, in fact, I’m so glad that I took advantage of the opportunities that came my way back then; I saw places, met many interesting people, and worked in various capacities that taught me so much about business, education, myself, and what I was capable of and how much I needed to learn. Little did I know how much of a skill set I would need to acquire years later when Brian arrived into the world… my new vocation as a Mom would test me to the core in ways I could have never imagined..

If someone had told me back in my swinging single days that I would one day be a mother to child with severe disabilities, I would have said, ” no way, not me”. This didn’t happen to people that I knew. While I was certainly aware of disabled children and had worked with them in summer camps (and had also babysat a young woman with Down syndrome when I was 13 years old), I never thought I would have a disabled child of my own- this only happened to “other people”. There is a reason why the future is not revealed to us and then there is also ” our plans” versus God’s plans. Little did I know how much my world would be rocked when I slowly realized that I actually was one of “those” people who I never wanted to be, especially in the beginning when Brian was first born.

It was very painful in those early days and all of my fear and selfish, self-centered impulses rose to the surface. I felt like a victim: it wasn’t fair to have a baby with so many challenges that would last for a lifetime. I was overwhelmed, defeated, and exhausted. There was no doubt that post-partum depression was playing a significant role at the time, as well as incredible, suffocating fear. I felt angry and guilty at the same time, but of course my beautiful baby boy didn’t ask for any of his many challenges either. Yet , even at a very early age, Brian showed incredible resilience and grace under fire and continues to do so today. Everything medically, sensory-wise, developmentally, that Brian has and will continue to go through for the rest of his life has been handled by him like a champ. Yes, it is very hard for him sometimes and he will make his displeasure known, but Brian also knows how to move forward and get on with his life in his inevitable joyful way. He doesn’t hold a grudge, nor does he act like a victim, and he never will. These things are not a part of who he is; his spirit and soul is and always will be pure and good.

Brian has been my teacher, as much as I have been his Mom, and for that, I am truly grateful. Brian has taught me extraordinary things about patience, grace, and resilience more than anyone I have ever known, mostly by the way he lives his life. I have not always wanted to learn these valuable lessons, and there are definitely still many days when I become frustrated and feel burdened by the weight of Brian’s disabilities. I also still get whimsical about my single days during some of these difficult times for sure, yet…..I can’t imagine my life without my beloved son, despite the hardships, the pain, and the fear. For with every challenge that Brian presents, there has always been an accompanying gift, one has never existed without the other. My parenting experience has been rich, bittersweet, painful, joyful, frustrating, and really just the most wonderful experience of my life. It’s incredible that such a dichotomy can exist, but it really does for me!

I have met terrific people and experienced a deep love that I never knew I was capable of giving because of my son. Brian has taught me great compassion for him, myself, and others. He has also taught me humor, appreciation, celebration, and a joy in all things great and small. Brian has also given me his perspective on what is truly important in this life and how not to sweat the small stuff. Brian has allowed me to make my mistakes; he has seen me fall down, broken and bruised, but offers his unconditional love and death grip hugs like no one else. Finally, Brian continues to model perseverance and endurance daily, just like a soldier off to the battlefield with an amazing grace. His life is not easy, but it has rich meaning and purpose that he has come to love and enjoys. This is EVERYTHING to a parent, for in the end, we just want our children to be happy and healthy.

Raising a disabled child is definitely not for the faint hearted and it is truly a marathon for life. It’s a huge weight, responsibility, and an overwhelming thought, so I tend not to dwell on it too much, but am certainly aware of the implications. These days I’m traveling more around town than around the globe; life has definitely become much simpler, yet simultaneously complicated. My husband and I know that many more challenging days are ahead, but there are also many good moments to look forward to as well. We choose to eventually accept the harder times, for in doing so we become stronger. There have been many wonderful moments with Brian as well as harrowing ones. Both good and bad days have taught us perspective, endurance , appreciation, and hope- all because of the love of a beautiful boy who brought out the best in us and helped his Mom to finally grow up. ❤️❤️❤️

Until next time, thanks for reading, 😊

A Daily Resolution I Can Keep

One of the things we did over the holiday break to keep Brian busy was to walk around some of the local ( and not so local) shopping malls. In recent years, Brian has learned to really enjoy going on these excursions. It’s not for the shopping, rather, he loves to engage with fellow shoppers with friendly greetings. Specifically, Brian likes to wave at others and in many instances, go up and shake hands. In the past, Brian would attempt to hug instead of handshake, often to the surprise and sometimes to the chagrin of the surprised shopper. Teaching more appropriate social behavior in public took time and lots of practice, but eventually Brian learned to limit his legendary hugs to family members and friends only.

Handshaking with strangers is an entirely different matter. We are trying to help Brian replace handshaking with hand waving, but similar to the hugs of the past, this is also taking time. Eventually, Brian will get there, but we are certainly in transition at the moment. Case in point, during our 4th shopping mall excursion on New Years Day, Brian kept walking up to strangers to shake their hands, while I was trying to redirect him. Most people were obliging and very nice, but understandably, there were those who did not appreciate my son invading their personal space. It was during such moments that Brian would become frustrated and my heart felt sad for my son. How do you explain necessary social graces to a sweet soul who is so pure of heart? It is this same exact vulnerability that also makes me so afraid for Brian’s safety, a lifelong concern that all special needs families share regarding their children.

I admit I was quite weary by New Year’s Day. It was Day 12 of the holiday break. We kept Brian as busy as we could during the vacation, but I was counting the hours until the school bus would come the next morning. My patience was starting to wear thin after a while, as I attempted to redirect Brian from shaking hands with everyone at the shopping mall. It was part comical, part crazy, yet, I could see the genuine joy and energy boost that each acknowledgement from a shopper gave Brian. He really loved the interactions and his joy was palpable. I could also see that the feeling was mutual for most people. Brian received many accolades from ” Hi Buddy” to “Is your son running for Mayor?” to ” high fives” and genuine smiles. One woman had tears in her eyes when Brian came up to her to shake her hand. She told me that encountering his beautiful spirit was the best moment of her day and wished us well. That was powerful and made me think of how our interactions with others can make a genuine impact for better or for worse. It also made me think about New Years resolutions in 2020 and what I can actually resolve to do more of.

Traditional self-improvement resolutions have never worked for me, as I historically give up within a few weeks of making them. In the end it’s not meaningful enough , hence, why I’m not motivated to stick with whatever I determined to give up in the first place. Perhaps my thinking on resolutions has been wrong all along: rather then focus on what I should deny myself of, how about making a conscious decision to give myself and others daily kindness? Simple, random acts of kindness that come from the heart do make a difference for both the giver and receiver. It costs nothing but your willingness and everyone benefits. Kindness can take many shapes and forms and can transform the minds and hearts of those it touches. Daily acts of kindness can be anything from a surprise note, phone call, or text, to sharing of resources, time, or your listening ear. Or as Brian does so well: extending a smile and a hand in kindness with a genuine joy in the world of the walking wounded. Each one of us will experience hardships in life that have the capacity to derail and disarm our joy, but a true kindness will always renew our strength to forge ahead.

One random act of kindness per day translates into 365 acts of kindness per person,per year- can you imagine how many more with determined resolve? The ripple effect would be phenomenal and so meaningful, much more than never eating chocolate again, which I certainly can’t do anyway. But I can resolve to do at least one act of kindness per day, simple or extraordinary, because it’s the right thing to do. I want to make a difference for the better, just like Brian does so well, with one smile, wave, and often one handshake, at a time..

Happy 2020! May your new year be filled to the brim with random acts of kindness, both given and received. Until we meet again, thanks for reading!

My Favorite Gift

While rushing out the door to attend Brian’s holiday party at his school today, the contents of my purse fell all over the kitchen floor. Tis the season to be grumpy- especially when you’re running late, so I threw everything back in the purse and continued on my way. It’s been one of those unusually fast-paced weeks, starting with a medical visit for Brian in Baltimore, plus the regular shopping, cooking, cleaning, never-ending laundry, and holiday preparations. Like so many others during this time of year, I’m already tired, feeling some stress, and it’s not even Christmas yet! Not to mention the 12 day break that Brian will have after tomorrow…

Holiday breaks are both a blessing and a curse for many special needs families: it’s great to be together with loved ones, but so many of our kids struggle without a set routine, so that means the parents struggle too. Yet, the school staff of course need a break and deservedly so. I’ve decided this year to really take one day at a time and try to plan “an activity of the day” for Brian, while simultaneously pacing myself. This is no easy feat, as I’m inclined to be on the go more often than not. However, I’m starting to really feel the physical toll of caretaking this year for the first time. I’m actually surprised that I’ve been able to maintain a good pace with Brian for 16 years without issue, but things have changed and I need to follow the cues of what my body is telling me. It won’t be easy, for most mothers suffer from guilt from time to time for not doing enough for their kids- I certainly feel that way! But a reminder from my wallet while reorganizing my purse early this evening, put my priorities back in their proper perspective..

It is exactly 10 years ago this week, that I was halfway through my chemo infusions for colon cancer. I remember my oncologist wanted to make sure I had treatment the week before Christmas so that I could enjoy the holiday and actually eat all of the delectables. My medical card from Memorial Sloan Kettering Cancer Center that fell out of my wallet today, was my “ticket ” to colon surgery, chemo, bloodwork, and MRIs. This special card entitled me to everything that was necessary for my cancer survivorship, and for that, I am eternally grateful. Colon cancer taught me many lessons, especially those regarding self-care, for my life literally depended on it a decade ago. I continue to enjoy the privilege of cancer survivorship 10 years later, but, there is still a huge responsibility that goes along with that gift. It is critical for me not to squander time, waste energy, or guilt, when it does my mind, and especially my body that went through so much, absolutely no good. I still wear my “Purple Heart” through the neuropathies in my toes and finger tips, permanent nerve damage caused by one of the chemo drugs and activated by very cold temperatures.

All cancer survivors have special momentos that they will forever carry on their bodies, minds, and hearts from their treatment experience, forever changing them in ways they never expected.. That was certainly the case for me: scars from surgery, effects from chemo, and certain food aversions were just some of the physical effects. Mentally, I was broken for a while, but with treatment, time, and love from family and friends, I was able to rise like a phoenix from the roaring fire. My body became stronger and so did my faith in God, whose grace ultimately got me through the ordeal.

You really know when life has returned to normal when you start complaining about the ordinary things that used to annoy you before cancer. That certainly happened to me and continues to on a regular basis, case in point, dropping my purse today, and just this week in general. It’s a blessing to have ordinary aggravations again, not life or death concerns, such as wondering in December 2009 whether the chemo would work and if I was going to make it.. I realize how lucky I am to have the gift of life, over a decade after cancer diagnosis -it is my favorite gift! I have been able to be with my husband, raise our son, and watch him grow up to be a sweet soul- for this, I am most grateful. During treatment, I was so afraid that I would not be here for Brian; he was only 6 years old at the time. I’m so relieved that it is all behind me now.

I don’t know what the future holds, but I do know that while living my life in the here and now, it is meant to be lived in all of its ordinary, messy, frustrating, and wonderful ways. Ordinary has taken on a whole new meaning in a good way for me. I am grateful for today’s reminder of my membership once upon a time in a club that no one ever wants to be a part of. I was given my life and the opportunity to live it with more appreciation and meaning. I continue to try to do just that and this gift will always be my favorite, especially at Christmas.

Until next time, thanks for reading! 😊

Brian’s Daily Christmas

It happens every holiday season: the annual hustle and bustle of cleaning, cooking, and shopping. The “don’t make so much food”, “let’s not buy so many gifts”, or my personal favorite: “I’m not mailing any Christmas cards”. My husband was teasing me just the other day when I said that this year I would not be sending any cards. “Yes, you will- you always do, who are you kidding?”. He was right- the very next day I placed an order that should arrive very shortly. I really do love giving Christmas cards as much as receiving them, but always find at the beginning of the holiday season that I need a “jump start” to get in the mood. At the end of the day, Christmas is all about faith, family, and friends, sharing delectable food and gifts. We look forward to being with those close to us, but gift giving for Brian is another story altogether.

In our home, Christmas presents, or any present for that matter, mean absolutely nothing to Brian. It’s hard to believe that this is still true, even today. I thought that Brian just needed some extra time, opportunity, exposure, etc. Over the years, Santa bought a variety of toys that we thought Brian would like, but he ultimately had no interest in any of them. This was very painful to watch, for every parent takes delight in giving gifts to their children, hearing squeals of delight, and seeing their joy. Brian, on the other hand, would get upset, scream, and throw his presents on the floor, It was hard for Jim and I to understand at first and Brian’s reaction was certainly the antithesis of how both of us felt about Christmas presents. This is one of the many ways in which autism is cruel and an unwanted guest- especially at Christmas. So, we had to learn over time to accept and to discover what Brian was really trying to tell us. ..

I admit, I am sometimes a slow, but always hopeful, student of my son when it comes to many things. But I’m happy to report that in this particular instance, I finally understand…It was just last week when my husband said “Every day is like Christmas for Brian” when we were discussing his recreational activities, camps, vacation, etc. I hadn’t really looked at it quite that way before, but Jim was right. These “Christmas gifts” are made possible by the collective efforts of an entire village. They are what make Brian really happy, as giving a toy on Christmas Day would be for another child. Despite, the initial adjustment to new people, places, and things, Brian learns that “new gifts” are not so scary and can actually be quite fun! There is the joy that follows, at least for the most part. Not every experience has been a positive one, of course, but fortunately these less desirable experiences have been infrequent.

Brian loves the company of others, which I believe, is his favorite Christmas gift of all. Our extended family, Brian’s school family, and social/recreational family,- each member has brought significant meaning to Brian’s life, and to our lives as well. Brian also loves to go out, and will hand me my car keys when I announce we are going to a particular place. Once upon a time, not so long ago, there was a little boy who hated to explore new venues and would scream in the car whenever we came to a red light. While Brian is still not a huge fan of New Jersey traffic (I’m with him on that one!), he can tolerate the stop and go of the road when he knows and trusts that the destination will be worth it. This is absolute heaven now compared to the hell that we thought we would never get out of in those early years. To say how relieved we are that those days are behind us would be an understatement- a huge Christmas gift for us for sure that continues to give all year round!

We will soon celebrate Christmas once again, embracing all that it has to offer with family and friends. And I have decided to let Brian try opening a few presents again! I know what you’re thinking- yes, maybe that won’t be a good idea, but maybe this year, it will be different. I have my theory how some small musical instruments may be just the game-changer that Brian needs, especially with his love for music. Regardless of what ultimately happens, Brian will continue to celebrate Christmas daily in his own way, with the people, places, and things in his life that mean more to him than a truckload of toys. There is a peace in this for him, and therefore, for us as well, and for that, Jim and I are extremely grateful. Peace is definitely an underrated and invaluable Christmas gift!

Wishing you the gifts of peace and hope during this blessed holiday season and beyond! Until next time, thanks for reading! 😊🎄🎄

Happiness Is A Choice

Amazon has changed the world in immeasurable ways, most of which are positive, and certainly keep me coming back to order things ! I love having an Amazon Prime membership for many reasons: free shipping, virtually any item you want is available, ordering from home, and most recently for me, free Amazon videos. I am amazed at the volume and diversity of programs that are available for viewing and had the opportunity to watch several during the Thanksgiving holiday. One particular show called “Happy” definitely grabbed my full attention and I highly recommend it. I believe it will be the best 80 minutes out of your day that you will spend.

“Happy” is a journey around the world to discover what really makes people happy with themselves and their lives. Individuals from all walks of life and various places are interviewed. Research scientists also provide their professional findings on the subject. You may be surprised by some of the outcomes that are discussed. For example, researchers have determined that 50% of a person’s happiness is genetically predetermined, an additional 10% is based on circumstances, while the remaining 40% is based on personal choice. I never thought of happiness as being ” measurable”, but in this particular context, based on how the information was presented, it made a lot of sense to me. Being able to directly impact my level of happiness almost half of the time is pretty powerful. It is just a matter of making intentional choices, which over time, can become second nature, and can even physically change your brain for the better. Who knew?!

I’ve been reflecting on this information, as well as the rest of “Happy”, and can see how beneficial and happy an intentional life can be when the right choices are made. Remarkably, this can even be true for people who are poor, (especially when compared to American standards) or for individuals who have experienced trauma or tremendous loss. Since all of us will go loss/trauma at some point in life, this is good news. For those of us who are parenting disabled children, this is especially encouraging, as our children’s traumas/losses, as well as our own, are often chronic and have the potential to make us very unhappy.

I was thinking about my own level of happiness in the context of being a special needs Mom. I have concluded that I am happy/content most of the time, despite the exhaustion, fear, and inability to solve Brian’s challenges-problems. There are many hurdles that Brian will always have to overcome in his life, challenges in my own life as well, things I have no control over, and this often makes me feel helpless. It can all be very scary and has the potential to keep me stuck in fear, but I don’t want to become immobilized, so I choose to focus on what I can change or improve, ESPECIALLY when I don’t feel like it. The key here: you have to be ready to receive and be in a place of brokenness for real change to happen. I was on my knees when this change took place in my life; there was no where else for me to go. There is truth that lasting growth can only happen out of intense pain, unfortunately there is no other way… but…the great news is, this pain can transform your life for the better, an amazing paradox indeed…

There are huge benefits when I choose intentionally for the better: perspective, contentment, and peace. Collectively, these 3 gifts equal true happiness for me, despite the daily challenges of raising Brian and an unknown future. Everyone can derive benefit from contentment, peace, and proper perspective, regardless of what life brings. Life is too short and I don’t want to miss out on the good moments because I’m still stuck in the bad ones. I deserve better than that and so do you!

It doesn’t mean that I don’t experience other emotions like frustration or anger. I most certainly do, just like everyone else. The difference lies in the perspective of the situation and how long I choose to remain in “the muck”. I can let the anger or frustration eat me alive or learn to let it go over time so that I can move on. I have experienced the former and can tell you it’s not a place where I wish to remain indefinitely. I have been robbed of time and joy during those dark moments when I have stayed too long in them. I have found that life can still be enjoyed and problems can even be forgotten about temporarily, when I am intentional with my choices. The reward is a change in mental perspective, even when the difficult circumstances remain. Simple moments are appreciated more, and an “attitude of gratitude” takes root. Plus as one good friend reminded me recently: ” nothing lasts forever” that includes both good and bad times. After a while, making good choices can become more automatic- that is the good news! It’s a very important part of my self care and when I see the positive effect of intentional choosing has on my life, I am even more motivated to keep it going. Finally, God’s grace is the “icing on the cake” that makes all things possible, especially the impossible!

Wishing you much joy and true happiness during this holiday season and beyond! Remember, you’re worth it, and so is living your best, imperfect life!

Until next time, thanks for reading. 😊

What I Wish(ed) For Brian

I always knew that I wanted to be a Mom as far back as I can remember. Even as a little girl, I wanted to have 5 children, all boys, by the time I was 30 years old. I have no idea why 5 kids or exclusively sons for that matter, but that was the vision that I had. Life had other plans, however, so that particular dream did not come true. I always loved children and ultimately became a special educator, ironically enough, after several years in the airline and pharmaceutical industries. I had many interesting work experiences, but my heart’s desire for marriage and a family did not come to fruition until I was 41 years old. I had been engaged a few times and had dated a ton, but it was still very difficult to find someone who shared similar values and goals. I have no regrets whatsoever in my decision to marry later in life; my husband, Jim, is my best friend, a good husband, and a great Dad. Like all marriages, we have most certainly had our share of ups and downs, yet remain solid together. I pray that is always the case: life is hard, sometimes unfair, always eventful, and requires a tremendous amount of fortitude and faith to get through a lot of it. Brian’s quick arrival into our lives especially made us very aware of these truths.

I had given up hope of having children of my own by the time I reached my late 30s, so you can imagine how surprised Jim and I were to discover that I was pregnant. As a matter of fact, we determined that Brian made his introduction sometime during our honeymoon in Hawaii. Life was about to change very dramatically for all of us 8 months later when Brian was born with Down syndrome. There was a lot of upheaval in those early months, so much to learn and adjust to on minimal sleep, as well as grief to process. Slowly, but surely, we adapted to our new normal, focusing on Brian’s health and resources that would enable him to thrive and survive. Brian came through his open heart surgery with flying colors; he was healthier and stronger than before. Brian had early intervention services in our home several days a week starting at 6 weeks old and eventually attended a center-based early intervention school for physical, occupational and speech therapies. We were hopeful for his continued progress in all areas and really depended upon a village in order to make this happen and still do today.

Interacting with typical children within our extended family and with other families made me very whimsical when Brian was about 15 months old. I really wanted him to have a sibling. I am one of 4 siblings and my husband is one of 5. Jim has 18 nieces and nephews and I have 5. Even though my siblings and I are not especially close, I still love my brother and sisters and know that they would be there for me if needed them and visa versa. I wanted Brian to have that experience of sharing with a sibling. I also envisioned another son or daughter overseeing Brian’s affairs, looking out for his best interests later on when we are gone. I really felt another child would be a good thing, but at 43 years old it was questionable, for many reasons. Yet, I had 2 friends who had recently given birth to healthy babies at 44 years old. I was in very good health, fit, and energetic enough. Despite a high risk pregnancy, the odds were not totally stacked against us. My husband was on board with the idea of expanding our family for the same reasons, so, we proceeded and became pregnant immediately again.

This pregnancy started off exactly like the last one. I had “night” sickness, was very tired, but definitely eating for 2. Each doctor visit was unremarkable. Brian and I napped at the same time, which was perfect. Jim was a huge help with Brian after work and on the weekends. Everything was going like clockwork, until one Sunday morning while I was visiting my sister, I noticed there was a little blood or spotting when I used the bathroom. The very same had happened during the first pregnancy, so I wasn’t overly concerned. I was feeling fine and just as hungry as ever. Then the cramping started around dinner time- more blood loss, anxiety, fear, and a visit to the emergency room. Monitors were hooked up, and an ultrasound was performed in the antenatal testing unit in the hospital- there was no heartbeat. You could hear a pin drop in the room it was so silent. There would be no sibling after all. I had a miscarriage at 10 weeks and was absolutely devastated.

I wish there had been another Mom to talk to afterwards, but I didn’t know anyone else who had had a miscarriage at the time. Jim was very sad too, but didn’t know what to say. So life just went on- it had to-as Brian was depending on us to carry on as usual. The loss would eventually be dealt with in counseling, but in the meantime, Brian had lots of needs and a diagnosis of autism one year later. In retrospect, one could say that it was just as well that we didn’t have another child because of Brian’s dual diagnosis. I suppose that is true, but that has never taken away the inevitable sadness that rolls around every October 21, the due date of the second baby. Time has been a healer, but there will always be that bittersweet remembrance of what could have been for Brian and for our family as a whole. I sometimes still wish that Brian had been afforded the opportunity to have had a sibling and wonder what that would have been like… I know Brian would have been an awesome ” big brother”. I have seen first-hand the special relationships that disabled children have with their typical siblings and am in awe. They often share a loving, strong bond and the typical sibling is generally patient, kind, and loving with their brother or sister, the traits that all parents wish for their children to possess.

Raising Brian has taught us over the years to be more practical with our wishes: realistic, yet optimistic, practical, but hopeful. What is the most important wish(es) at the end of the day? As hokey as it sounds, good health and happiness tie for first place. Without these two blessings, nothing else really matters, whether you are disabled or not. Although Brian can not speak, his actions, body language, hugs and smiles tell is that he is happy, at least most of the time, and thank God, healthy too. We know how quickly this could change and never take these things for granted. I know there are many parents who would give anything for their children to be happy and healthy right now. It is so heartbreaking as a parent when you can’t solve your child’s problems or make things better. We can’t solve Brian’s many challenges- they are numerous and lifelong and have been heartbreaking at times for us, but we continue to learn to change what we can and let go of the rest. Most importantly, we live just one day at a time, because that’s all we really have right now, in this very moment….

Until next time, thanks for reading! 😊

The Certainties Of Special Needs Parenting

Parenting has been one of the most rewarding and difficult experiences in my life, and, I wouldn’t trade it for anything! Being Brian’s Mom has given me an indescribable joy that is bar none on the life experience scale, yet it’s also been simultaneously exhausting and sometimes frightening. Jim and I will always remember when we first brought Brian home from the hospital, lying on our bed with this precious baby, both of us wondering aloud how exactly were we going to care for this adorable creature? He wasn’t discharged with a “How To Parent Brian” manual. We wanted to know and do everything right of course, so typical of first-time parents.

In those early days, most infants, special needs or not, are on an equal playing field as far as their care is concerned: feed, change, bathe, repeat. Brian was like that for sure, so the obvious differences between a typical baby and our son became apparent to us ever so slowly, but surely, with the difference in the developmental tracks becoming wider and more dramatic over time. As the developmental track widened, so did the full realization of Brian’s disabilities, and how they were here to stay. It has been quite the journey so far raising our son, with more adventures to come, no doubt! We have learned over the years that there are absolute certainties of special needs parenting that will occur, for better or for worse, and more often than not, it’s best to embrace each one wholeheartedly:

1. You Can Only Control Yourself

As much as we would like to control others, we simply can’t. It certainly would make our lives easier though, especially in a heated IEP meeting discussion, during a consultation with a doctor who doesn’t quite get our child, or the 10th phone call to a state agency for resources . The powers of persuasion and advocacy work much better, but these efforts take time, research, planning, energy, and so much PATIENCE . It’s our legacy as special needs parents and always will be.

2. The Highs Will Be Higher And The Lows Will Be Lower

I have found that raising Brian has often been an “extreme” experience, especially when it has come to the achievement of developmental milestones. Brian took first steps at 4 years old, said ” Mom” and “Dad” at 15 years old, and still needs assistance with all activities of daily living (and always will). Conversely, we appreciate literally EVERY step that Brian achieves and celebrate these moments like the grand prizes that they are. We know how hard Brian works at the attainment of any goal, and feel his struggles deeply ever step of the way.

3. It Will Always Take A Village

When you have a disabled child, you will always depend upon the assistance of others to help you. I am very grateful for “Brian’s People” and how they enrich his life, as well as ours. Like most special families, we have had our ups and downs over the years with less than stellar school placements, home therapists, or social activities for our kids. At the moment, we are in a very good place with a wonderful school/ bussing personnel, home therapists and recreational programming, but I realize this can and will change at some point. I know that I can also be as resistant to change as Brian is, especially when the status quo is working just fine. Support from other special parents has been such a gift and helps especially during the inevitable difficult times. One of the greatest blessings from Brian’s disabilities has been the friendships formed with others special parents, whom we would have never met otherwise.

4. You Must Take Breaks Lest You Go Insane

I love Brian with all of my heart, but I can become easily overwhelmed by his comprehensive care, to the point where I had previously neglected my own physical and mental health. I finally came to understand that if the Mother Ship goes down, I won’t be able to care for my son at all. This reality forced me to make a necessary mental shift. The first and most important priority is my own self care. Going back to Certainty #1- I can’t control anyone, but I can control myself, my choices, and my actions. I choose now to take care of myself while Brian is occupied so that I can take care of him, plain and simple. My self care takes many forms and may be just for a few hours or a few days when I’m able to arrange it, but the point is, I do something for myself that gives me a break and a respite. It is a necessity, not a luxury!

5. Your Child Will Bring Out Both The Best And Worst In You

I never realized how patient I was until Brian was born, yet simultaneously I get frustrated over so much of the repetition in our lives as a result of his disabilities. I’m grateful for his home therapy team, yet some days I don’t want anyone in the house. I’m glad that I am the Captain of Team Brian, but often wish the responsibilities weren’t so many and intense. I never knew I could multi-task so well on Brian’s behalf, resulting in his best life, but it has come at a personal price, hence, the importance of Certainty #4.

6. A Sense Of Humor Is Your Best Weapon Of Defense

There is no doubt that special needs parents need to arm themselves daily with a strong sense of humor in order to diffuse those challenging moments that our children inevitably create. I’m sure we parents could collectively write a book about such escapades and it would become a bestseller! Brian has certainly had his moments, like the time he threw his prescription glasses out the school bus window at highway speed. Or the time he decided to throw all of his shirts into the toilet and attempted to flush them. The best was when our neighbor rang the doorbell out of concern, as she saw flickering lights for several minutes from our first floor, when it was just Brian stimming on the light switches, so it wasn’t a SOS call after all. And on and on it goes- not necessarily funny at the time, but our kids do teach us how to eventually appreciate the humorous side of most situations.

7. You Will Always Have That Fear Of Leaving Your Child Behind

This fear is an absolute certainty, no matter how minimally or profoundly disabled your child is. You worry about what will happen to your son or daughter if you should die first and for good reason: no one will ever take care of your child the way you do. With improved modern medicine, it is very possible that our children will outlive us, though this is certainly not always the case. There is no way to fully reconcile this major concern, no way to control the outcome of what will actually happen and that’s very scary. In the meantime, we give our kids every opportunity to be independent, have them participate in overnight camps, school, respite, etc, with the hopes that they will glean skills along the way, get used to being with others, so that they are not exclusively attached to us. It is the ultimate faith walk, so I try to remember how faithful God has been in providing for Brian up until this moment with all of the resources that he needs, believing that this will continue, despite not knowing exactly how for the long term. Someone once shared with me: “I do not know what the future holds, but I know who holds my future”. I believe this and so does Brian, as he lives his life each day in total trust that his needs will be met. I can learn so much from my son about faith in action!

8. Your Priorities In Life Will Change

Our kids also have a way of changing our perspective on what is truly important in life, eliminating what isn’t, and teach us how to hold on to what is most important. Things like: kindness, compassion, understanding, patience, simple pleasures, belly laughs, deep hugs, and respect. Material things don’t matter as much, being together does! Time is too fleeting and precious to spend it with those who don’t want to understand you and your disabled child. Brian has reinstated that child-like wonder in our lives with his love for music, water, and board books. His joy and smile are contagious and he loves with his whole heart once he gets to know you. I’ve been told numerous times that Brian gives the best therapeutic hugs ever! Our kids do not not what it means to become jaded or to hate others, two blessings that would make our world a much better place.

9. Don’t Forget Your Daily Dose of SNM!

Last but not least, none of the aforementioned certainties can be fully realized or appreciated if you don’t attain the basics first: sleep, nutrition, and movement (SNM). I find quality sleep in particular is becoming more elusive as I get older, but I try to get to bed at a reasonable hour, eliminate all electronics at least an hour beforehand, etc. Sleep deprivation is the absolute worst and can deplete all coping skills. Disrupted sleep is quite common in special kids also, especially around adolescence, hence, why Brian takes medication for sleep, which has been a total God send and has saved me from losing my mind! Now regarding nutrition- I love junk food just like the next person, but definitely feel better when I eat less sugar, so I try not to have too many sweets in the house. Finally, incorporating some type of purposeful movement daily, whether at the gym, walking around the block, or even around the house, helps my joints, energy, and well being. I admit it can be a chore and I often lack motivation, but of course am glad when those FitBit steps have been accomplished, with my mind still intact! 🤣

Certainty #10 – Until We Meet Again 😊

Thanks for reading❤️❤️❤️

The Dance With My Dad

My Dad passed away in 2014 and not a day goes by since that I still don’t think about him. I miss him so much for numerous reasons, especially his wise counsel, which was always a constant in my life. Whenever I made mistakes or struggled with making decisions, Dad was the Voice of Reason. He was supportive of my choices, even if he didn’t always agree with them. Dad was never judgmental, but would certainly express his opinion with my best interests considered. A reserved man by nature, yet Dad could be the life of the party with his trademark sense of humor! Dad appreciated a good joke and loved teasing those he loved. My siblings and I share his sharp wit, especially my sisters. Apparently Nana Boyle, Dad’s Mom, had a great sense of humor that was legendary, so perhaps this is a hereditary trait . Everyone who met and knew my Dad would describe him as a gentle, funny soul, who made you feel at home being in his presence after only a short period of time. Now of course, he was not perfect and could conversely lose his temper in a New York minute. Raising 4 kids would certainly be cause for episodes of impatience and frustration, which most certainly happened in our family. Yet, as quickly as Tempest Dad arrived when provoked , Tranquil Dad almost immediately followed and never held a grudge. I was always amazed how Dad was able to switch gears in those moments and never look back.

I learned so much from my father about respect, honor, loyalty, devotion, and love. Dad was a devoted, loving husband to Mom and a great Dad to my sisters, brother, and I. I would like to think that I was “Daddy’s Girl”, as I am his namesake and look like him, ( and according to Mom, I could also be very stubborn like Dad too, lol), yet, the reality is, Dad loved my sisters, brother and I deeply, equally, and was aware of our individual needs and knew how to meet them. He loved us all for who we were unconditionally and wholeheartedly until the day he left for Heaven. I am so grateful for these gifts from my father and feel blessed that he and I had a close relationship, so there was no regret at the end of his earthly life or now.

Although Dad is no longer physically present, I am aware of his spirit and know that he is still with me. Sometimes it’s through nature, like the cardinal bird, or in a photo, or even through a song. Case in point, Brian and I were driving in the car this afternoon when the song ” Dance With My Father” by Luther Vandross came on the radio. It is one of the most beautiful ballads ever performed by a gifted singer. I bawled when I heard it, very unexpectedly, even surprising myself! Although I have heard this lovely song many times before, it was especially poignant for some reason today: a vision of Dad and I dancing at my wedding reception came immediately to mind. It was one of the most special moments of my life. I know Dad would say the exact same. It wasn’t just a dance between a father and daughter; to me, that precious moment in time represented a culmination of a lifetime of steps and turns that Dad and I had taken together. Through good and difficult times, Dad was present at every step and turn in my life, and continued to be, especially when Brian was born with Down syndrome. Brian’s arrival into our family created numerous unexpected steps and turns that often made our heads spin, particularly in the early days, when we were consumed with joy and grief simultaneously.

Dad absolutely adored Brian and called him his “wee man”. He loved to hold him, play with him, and speak to him. Dad and Mom were so supportive and helpful in watching Brian and picking him up from his special preschool a few days each week in the early years. Dad cried with me when Brian was later diagnosed with autism, a major twist and turn in the dance. He and Mom continued to show their support and love through Brian’s second diagnosis, despite the initial pain and loss they must have felt as grandparents. Over time, Brian would teach us all that there can be beauty in what appears to be ashes and with that, a profound love that our family is truly privileged to experience from a beautiful boy who loves us all with a pure heart. Dad continued to love and adore Brian as he grew older and instinctively understood his sensory challenges. Dad always gave Brian the space that he needed and gladly received hugs from Brian when he was able to give them. Now, Brian is so much more sociable- what a difference time and maturity can make in our kids lives! I wish Dad was here to experience Brian’s hugs today! Yet, I know one day they will be reunited, as we all will be, to unlimited hugs and so many more heavenly things! I look forward to that day and it is that hope which fuels my faith. Dad lived his life by faith as well, a wonderful gift that he shared with me that I am so grateful for.

There are still many days when I pick up the phone to call Dad to share a joke, or to ask his opinion about something, then realize right before I place the call that he is no longer here. It’s funny how that continues to happen, but perhaps it’s not a coincidence after all. I believe when these moments occur, Dad is reminding me that he is still with me, now and always, albeit temporarily separated by death. I believe that our time here on earth is just the “dress rehearsal”- we can only imagine what the “big show” is going to be like in Heaven, with our families and friends. I can’t wait to ask Dad for a dance when we are together again…

Thank you, Dad, for everything, I love you so..until we meet again 😘😘😘❤️❤️❤️…

Me, Myself, and I: I like us all!

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! 😊