Letting Go for Serenity’s Sake- It’s All A Matter Of Faith

“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.”

The above Serenity Prayer is one of my all time favorites and it never loses its power. Courage, Wisdom, and Serenity, 3 priceless treasures that I desire in my life. Regardless of who you are, what you believe, or your life experiences, at some point, you will need a power greater than yourself to endure very difficult circumstances, whether it’s the effects from a global pandemic, or raising a special needs child. I have learned this the hard way. Talk about feeling out of control , isolated, and frustrated! Our attempts to control our personal situations in order to make them better, especially during this unprecedented time, can sometimes be futile and beyond our grasp. We learn over time that despite our good intentions, we can actually be in the way of progress and the peace that we seek.

I have definitely struggled with feeling out of control, especially over the past 6 months. Humans are relational, so we are not used to being home so much or having restrictions when we do go out . Remote special education learning especially, has been very challenging for many families. Eventually, “this too shall pass”, but in the meantime, I still have my days when I raise my hands to Heaven and say “Serenity Now!!” particularly during those moments of isolation and frustration with Brian, when we are both so tired of the virtual routine. It also seems in no time, I also have a messy house once again, a mountain of laundry, an almost empty fridge. Yes, I do need serenity NOW!! I can so easily get overwhelmed and don’t always multi-task so well. I’m used to being “in charge” and am fiercely self-reliant, perhaps too much so..

We live in a world that values self-reliance independence, and “taking charge”. At the moment, it seems like these attributes have been put on hold due to COVID-19 and it feels very unsettling. As special needs parents, we must constantly “take charge” on behalf of our children who are depending on us to do so, regardless of an ongoing pandemic or not. It is the price of advocacy that must be paid in order for our kids to realize all of the resources that they will need in order for them to live their best life. This constant advocating is exhausting to say the least, but the deep love for our children keeps us going. Over the years, I’ve had to learn to pick my battles when advocating on Brian’s behalf, and let the rest go. Relinquishing control of things that won’t really matter in the long run anyway is for the best, but it certainly hasn’t been easy.

When you really think about it, control is truly just an illusion, it makes us feel like we are in charge of our lives, but the reality couldn’t be further from the truth. We can control people or things as much as we can demand the sky to turn green. As much as I wish that I could control the circumstances in my life the way I think they should be, (as it would certainly make daily living much easier), I cannot, but there is something I CAN do: exercise my freedom of choice and ultimately trust that all things will work together for the good, even when it doesn’t always appear that way. I can chose to believe that I am making the best decision at the time with the information that I have, then “let it go”. Boy, is that difficult to do! Fear rears it’s ugly head and you start to doubt your abilities, thinking you are going to make a horrible mistake-sometimes that is exactly what ends up happening, yet, we can learn from the experience. But there inevitably comes a point when you get tired of feeling fearful, carrying your burdens, and frustrated by your efforts that may or may not have made a difference anyway.

There is no doubt that raising a special needs child can invoke huge fear. I have certainly felt that many times over the years and still do. Our kids don’t come with manuals, so we are students of our children, trying to figure out who they are and what they need. We depend upon so many people to help us help our kids, that it can be both relieving and overwhelming. This is our children’s legacy and always will be, so how do we cope with this lifetime mission? There will be many circumstances along the way that will test our character and resilience as we help our children, situations that will force us to face ourselves, our actions, and our limitations. There will also be that moment when we realize that we can’t control things or do everything on our own. I have discovered that there is a lot of freedom and peace that comes with this awareness and ultimate acceptance.

In 2009, I was literally brought to my knees due to personal circumstances in my life that had knocked the wind right out of my sails. I was at home at the time recovering from colon cancer surgery when one afternoon, I felt a huge weight on my chest. I was having severe angst over chemotherapy that was to start in a few weeks. What I thought was initially a heart attack, was in reality a severe anxiety attack and I felt the most overwhelming sense of doom and gloom. The feeling was like a roof caving in; I was trapped, and unable to move. In retrospect, I was clearly at the end of my proverbial rope; the colon cancer, Brian’s needs, and my husband’s unemployment at the time, finally hit me all at once. I remember begging God to release me from the physical and mental anguish that I felt. I don’t remember exactly how long I was on my knees in prayer, but there was a remarkable peace that followed this episode. Although my circumstances hadn’t changed, my perspective had, and the overwhelming anxiety had dissapated. It was truly a life saving moment for me!

To make a long story short, this new found peace and assurance that God is ALWAYS with me, no matter what, has enabled me to go through life and face what comes, because I am not alone in my struggles . Now, of course I still complain a LOT when difficulties do happen, but the difference is, I am now free from the self-imposed expectation from my past that always said that “you are responsible for EVERYTHING, and mistakes aren’t allowed.” How ridiculous was that?! I know it’s crazy thinking! The first lesson that I learned right after Brian was born, was that special needs parenting is definitely not for perfectionists. It was an ongoing lesson that I’ve had to learn many times over the years.

At first, it was an intentional/ literal choosing of asking for God’s guidance and help, not just with Brian, but in every part of my life. Then the intentional changed to the natural very gradually over time, because I was ready and willing to take little baby steps in faith. The rewards have been great and have often exceeded my expectations, in terms of the people and resources placed in my life. It is not a coincidence that these gifts have always come along just at the moment when I’ve needed them most. I have learned that I just need to be willing, open, and trust God for the rest. He has not let me down, although I often wish His timing didn’t take so long with things,. Without God’s grace and help, it is too hard and virtually impossible to endure the inevitable trials that will come. I am beyond blessed to be a cancer survivor, my husband eventually found an even better job than the previous one, and Brian continues to thrive and live a life that he loves. Yes, the struggles will continue and are often painful, but I no longer carry my burdens alone and actually never did! I also may not know what the future holds, (and that is actually OK) but I do know who holds the future! I’m so glad that I’m not in charge, for I wouldn’t want that job!

Wishing you many blessings and “the peace that passes all understanding” in the midst of your current trials- you are truly not alone! Until next time, thanks for reading! 😊

t

M

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A Birthday Love Letter

Brian will celebrate his 17th birthday this week and I have been thinking a lot about what the past 17 years have meant to me as his Mom. Like most parents, I have had a multitude of experiences during this time with my special son that have been exhilarating, frightening, frustrating, and loving, sometimes all at once! I can’t imagine not being Brian’s Mom, while sometimes wishing on certain overwhelming days that God didn’t expect so much… It’s a privilege to be a parent and to have that ability to influence and raise little human beings entrusted to your care. It’s also a huge responsibility and sometimes a burden , where it’s no longer “all about me”, rather, “it’s all about thee”. Yet, I think it’s safe to say that most of us couldn’t imagine our lives without our children, for better or for worse. They are forever a part of us and add a richness to our lives, reminding us daily of what is important, loving, and genuine.

The challenges of both Down syndrome and autism prevent Brian from speaking, reading, or writing. It was a tough blow in the beginning to accept these truths and the life-long implications for Brian as a result are clear. I still become whimsical from time to time, wishing that Brian and I could have a conversation. I dream about those talks sometimes, or how Brian could read his favorite stories, and write down his thoughts on any given topic. I know that I am projecting a part of myself, thinking that Brian would want to do these same things had he been a typical kid. Of course, that may or may not have been true anyway, but still, that longing is always there. This is especially true during challenging times when I see Brian so frustrated and unable to speak what’s on his mind. If only I knew what it was, I could make things better. Speech apps on the IPad can only communicate so many words. Yet, despite himself, Brian has actually learned to become pretty proficient with his “talker” and has become a better listener/“communicator” over the past few years. His receptive language has increased and just when I think he either doesn’t understand or is not paying attention, Brian proves me wrong almost every time!

For every challenge in Brian’s life, there have also been as many victories. I am proud of my son’s resilience and how he handles everything that is thrown at him with incredible grace and strength. He soldiers on, never holding a grudge, or expecting anything, with the exception of being fed, loved, and cared for. Brian’s joy is the real deal, as much as his displeasure and fear are, especially when it comes to sensory things or transitions. Reflecting on all of these things, I want to express to my beloved Brian on the completion of almost 17 eventful years what his birthday, his life, means to me. Somehow, I believe he already knows the things I’m about to say..

Dearest Brian,

It is incomprehensible that you will be turning 17 years old in a few days. How and when did this happen?! My brain is having difficulty imagining this major milestone in your life. So much has changed over the years for you , yet simultaneously a lot of things have remained exactly the same and always will. Regardless of what has transpired in your past, present, or future, you remain steadfast, strong, and a loving human being that I am so very proud to call my son. I often marvel at your overall good nature in the midst of your trials. I have learned so much from you, carefully watching your actions and reactions, to people, places, and things. I sometimes don’t know how you continue to persevere with your disabilities , but inevitably you do, with grace and a determination that is beyond admirable.

I love everything about you from your beautiful blue eyes to your pronated ankles and have taken a special delight in what truly makes you happy. You are a simple young man who loves simple life pleasures: food, music, people, movies, your Ipad and of course copious amounts of water. You continue to teach me that a life can be well-lived whether we are on a great adventure or doing nothing at all. I am so proud of your willingness to try new things now; years ago that would have never happened! New adventures are still scary, but you work through your fears and usually end up accepting the situation and often have fun. I wish many more life adventures for you, my Brian, and it is Dad’s and my mission to expose you to as many as we can.

Thank you, Son, for teaching me to be stronger than I ever thought I could be. Your open heart surgery at 3 months, orchiopexy at 18 months, ear tubes at 3 years old, eye surgery at 11 years old, and back brace for scoliosis for over 2 years were so hard to witness. Then my colon cancer diagnosis came along, as well as Dad’s job loss, and his prostrate cancer diagnosis. Some days my heart felt so broken for you that I thought it would break altogether.. I couldn’t believe how you managed to get through your medical challenges so strong, so accepting, and so determined.. You inspired Dad and I to do the very same by your courage and resilience, so that we also, could face our adversities. What incredible gifts from a beautiful boy! Thank you for showing us that there is still beauty in the ashes of life, even when we don’t always believe it or feel that way..

Brian Michael, you are a treasure and my heart, the miracle baby that I never thought I would have. I had resigned myself to thinking that I would never have children, but God obviously had other plans and you even arrived a month ahead of schedule! Some things are just meant to be. Granted, you were not necessarily the son that I had expected, and I was quite overwhelmed by your disabilities, especially in the early years. However, these past 17 years with you has shown me that your story is not a tragedy, rather, it is a complex/ genuine/ challenging/ intense love story that is victorious because of the choices that we have made together, despite the things that are out of our control. The outcomes and endings could have been very different, but overall, I think you would agree that your life is one of great value, meaning, and love and we wouldn’t have it any other way.

As you begin your 18th year of life this week, I wish that the desires of your precious heart will be fulfilled in this new year. I wish you continued joy, strength, and love, especially in the tough times ahead. I pray that you, Dad, and I can continue to make new memories that we can all treasure together. I pray that God will protect you from head to toe with good health and give you the grace that you will need to live your best life. Thank you for being our most prized possession and for the joy that you continue to bring to our lives and to all who are so fortunate to know you. Our lives are forever changed for the good because of you! Happy Birthday, Beautiful Boy! 🎉🎉❤️❤️😘😘

All My Love,

Mom 😘😘😘😘😘❤️❤️❤️❤️

A Mother’s Guilt Never Goes On Vacation-Except At The Jersey Shore!

Covid 19 has reaked havoc on so many levels over the past 4 months, creating unimaginable stressors and circumstances for everyone. Some families have been directly effected by this awful virus by losing loved ones to it. Others have lost jobs, marriages are struggling, and many of us are depressed by events that are out of our control. It’s hard to fathom now when we greeted 2020 in January, that our lives as we knew them, would be turned upside down and inside out just a few months later. It’s been mentally and physically exhausting, to say the least.

Thank goodness for warmer weather now and small glimmers of hope, as restrictions are slowly being lifted in our area. Although this is not the reality for certain areas of the country at the moment, we can see how proper social distancing, masks, and hand hygiene will result in more opportunities to do things outside of the house. It’s amazing how going to the drive thru at Dunkin Donuts now qualifies as an official/ daily “road trip”. Or how food shopping has become an exciting way to actually SEE PEOPLE and talk to them in person through masks at a social distance . More recently, we can add our town pool to the list of social distance opportunities with friends that we see there. It has done my heart so much good to see these pool pals, albeit from at least 6 feet away, but I no longer feel like the island I was surely becoming. This is a very good thing for us, especially Brian, who is quite social in his own way, despite being non-verbal. Water and waving to others are 2 of his most favorite things ( if you don’t count music and snacks of course). Simple, Summer pleasures under the sun never tasted so sweet!

You can probably tell that I have made my peace with , at least for the most part, being home for so long. What choice do any of us really have ? But actually, we do- bitter or better. I was becoming bitter about our current situation to the point where it was effecting my physical and mental health. I decided to try choosing “better” at that point, but it’s definitely not easy, in fact, it’s really hard! There is still the daily struggle in making “better” choices throughout the day, with constant temptations along the way to default back to “bitter”. I am a work in progress in terms of accepting what I can’t control and letting it all go, but I’m getting “ better”. Focusing on things that really matter is my ongoing mission. There is one issue in particular, however, that continues to be a thorn in my side, long before Covid 19 arrived, (despite choosing “better” more often than not, for the past 17 years): Mothers Guilt.

Moms, you know exactly what I’m talking about! My guilt started during my pregnancy with Brian when I was told at 18 weeks along that be had a large hole in his heart. What did I do to cause this? I berated myself for drinking a weekly glass of wine with dinner, for that surely must have been the reason! I know how irrational that sounds, but I was afraid. More markers along the pregnancy indicated Down syndrome and deep down I knew that Brian had it, so it really wasn’t a surprise when the doctors confirmed it when he was born. I had a brief reprieve from “Mothers Guilt” until early intervention started- that was truly both an eye opener and game changer that brought Mothers Guilt to a whole new level.

They say not to compare your disabled child to other children, which is very wise advice, but, the reality is, you can’t help doing so when you see your child amongst other children. It was apparent during Brian’s early intervention years that his journey of development was not only slower than his peers at his special school, but it was also very unusual, with “quirky” behaviors and what I learned to be “over” as well as “under” reactions to the world. I had no clue at that time as to what was going on, and felt guilty that I couldn’t find a solution, especially as a former special educator . It was a very lonely time for sure. Ultimately, I was inspired by God’s grace one evening to research “ Down syndrome and autism”. You can imagine my shock when I discovered that there was even such a diagnosis back in 2005. Then our real journey with Brian began..

Over the past 15 years, there have been many opportunities to feel guilty: Brian is not getting enough speech, occupational or physical therapy . This was actually the case both at home and school initially, so I had to advocate for extra services ( a whole blog of it’s own ). Here’s another: if only I would have done more of the OT, PT, SP exercises at home, surely that would help Brian achieve more. Well, yes and no- there is no doubt that parental involvement is paramount to a child’s success, but every child develops in their own time with resources and supports. I learned that in college- how could I not remember? Shame on me! Grieving losses of what could have been is often packaged as guilt of what “should have been done”. Acceptance of what truly is as a special needs parent takes copious amounts of grace and self forgiveness. These are the biggest lessons that I continue to learn. It is truly a marathon, not a race. Perfectionists need not apply for special needs parenting…

Rolling the tape forward to the present time, virtual learning has resurrected those guilty feelings once again. I want to give Brian opportunities to learn and support the school staff, so we give this new mode of learning the old college try. The reviews are mixed: a little success, depending on the day, but overall ineffective for him. I’m not motivated by this outcome to go further, so of course I feel guilty about that , especially when the staff is trying so hard. Plus what if Brian has a learning breakthrough and we miss it? Guilty! So we tried- a little- why not more? At least it was better than not trying at all. Then there was the planning of the rest of the day- boy, did I really come to appreciate school days even more! It’s hard to be a solo act when trying to keep your disabled son engaged when he needs constant attention and prompting to do things. Thank goodness there was some home therapy too a few days a week. Of course, I was unable to be 6 people in one and eventually burned out from physical exhaustion and guilt. On and on this mental madness went on for several weeks until I finally hit a brick wall at the end of June. Brian had the time of his life at that point when I had no objections to unlimited iPad videos and movies for a few days- it was totally unprecedented! Of course I felt guilty and in desperate need of a break: a shore vacation came just at the right time this year. We had planned months ago to go away when we thought Brian was going to overnight camp, so we were very fortunate to still have the original reservation. I couldn’t get away quick enough! At that point, i would have driven anywhere, just for a change of venue and routine.

We had a wonderful beach vacation last week. The ocean was the perfect elixir for everything… I could look at it forever! Our accommodations, the restaurants, the beach, the weather, etc, was great. It was a simple time of sleeping in, walking long distances on the boardwalk , reading fun fiction by the ocean/pool, eating outdoors, repeat, for 7 days. There was no mention of special education in any capacity during our time away; it was strictly verboten and the best thing that happened. I was amazed that not one guilty thought or impulse crossed my mind, it was truly unprecedented! It was a bummer of course to leave this paradise at the end of the week, but I was so glad to come out healthier, more rational, and more well rested on the other side.

It has been an adjustment this week for sure, getting back to “reality” of more virtual learning, home therapy, and more of the “same old routine”. There will always be an ongoing battle with me and Guilt as far as Brian is concerned, as situations will continue to present themselves, BUT my guilt-o-meter is not as elevated as before… I believe our time at the beach reminded me of the importance of the basics: sleep, eating well, and doing NOTHING. These things are perfect and fine to do whether you’re at the beach or at home. That is a good lesson to learn, especially during this pandemic. And our kids should also have down moments too, for they need them just as much to replenish their batteries…

Wishing all the Special Mommas many moments of refreshment, rest, and downtime whenever and however possible, especially during this pandemic, for we truly need them! Our kids will benefit from our self care too and need us to be our healthiest for them. As Stuart Smalley from Saturday Night Live said during his self-affirmations while looking in the mirror; “I’m good enough, I’m smart enough, and gosh, people like me”! No truer words have been spoken!

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Let Freedom Ring!

Brian’s “virtual learning” for the regular school year has concluded, though there was nothing “regular” about these past 3 months at all. In fact, Brian was generally disinterested by this medium of learning and would communicate this quite often! He would attempt to turn off these Zoom sessions on multiple occasions and look away from the screen, as though to say “ I can’t see you”. On a few occasions, that is exactly what happened, when we were unable to connect with therapists and/or hear what they were saying, resulting in Brian getting up and going into another room. Technology can certainly have its limitations and I don’t blame Brian for his reaction. After several weeks, he was done with learning in a way that did not make any sense to him in most instances, and quite frankly, so was I.

There were also moments over the past 3 months when I was conflicted, riddled with guilt, as much as I was impatient and frustrated. I wanted Brian to glean something useful from these virtual sessions. I also had high hopes initially when I went through the huge manila packet of worksheets that came home in Brian’s backpack the last day of school in March. “ Maybe there will be some activities that we can do together”, I thought, as I perused the enclosed materials. By the time I reviewed the last pages of the packet, I realized that the chances of learning success for Brian with what was in front of me were slim to none. Yet, I didn’t want to have a negative attitude before we even got started. So, Brian and I gave it the “old college try” for a full 5 days. The result was minimal/ fleeting participation from Brian, (complete with his signature heavy sighs), while I did almost everything hand-over-hand with him. There were more verbal prompts then should have been allowed by law! We were more than done at that point.

Yet, I completely understand the rationale as to why the materials were sent home. School staff had to provide something quickly to students before the pandemic officially locked us all down in our homes. We’ve all seen worksheets before and have completed them ourselves as students, sometime during our educational experience. But for many special needs students, like Brian, they mean absolutely nothing and are a waste of time So, we continued to persevere in virtual learning, as I also wanted to support the school staff for all of their heroic efforts in trying to virtually teach a multitude of needs and abilities via group learning sessions and individual ones- what an impossible task! I have no doubt that the teachers and therapists were often as frustrated as parents and students were for both the same, as well as different reasons. All of us are trying to brave through this new, unchartered territory. While we certainly had some virtual successes, (much to my pleasant surprise), I have to say that overall the whole experience for us was a dismal failure. What remained were many days of frustrations, unmet IEP goals, and the uncertainty as to when our kids will finally go back to school. I am clearly unqualified to be Brian’s teacher, aide, and therapists all rolled into one person. It’s unrealistic anyway and quite candidly, being his Mom is more than enough for me.

Like many parents, I am looking for an endpoint, a deadline, as to when our children will finally go back to school. I was quite hopeful, like many, as we saw restrictions being lifted, more things opening up, less Covid hospitalizations, etc. A light at the end of such a challenging tunnel is always cause for great hope and propels us to “keep on, keeping on”. Our governor even announced last week that school districts could offer in person Summer school, virtual learning, or a hybrid of both. I see a light! This was beyond exciting and the information that many families were hoping to finally hear! Then less than a week later, this hopeful news of on-site learning ends up being a false alarm and unattainable after all. Permission was given, but not the proper guidelines/tools to make it happen, so back to virtual learning we go. Another epic failure that continues to marginalize the educational needs of most disabled students. Even worse, not one word has been said so far about going back to school in September or what the game plan is in order to make that happen. Even a “preliminary” plan would be better than no plan at all, which makes me wonder if that is indeed THE plan…

I understand that not everyone is comfortable in sending their children to school now, or even in the Fall and beyond. I also recognize that some hold different points of view regarding how the road to “Operation Back To School” should be implemented. Every family has unique needs, concerns, and ideas as to how this should happen, as it should be! However, each one of us should also have choices and the freedom to chose, as we see fit, the education of our disabled children, based on their unique needs. Virtual learning doesn’t work for the majority of disabled students, so onsite learning should also be offered as an option for those who wish to pursue it. Some private school programs are offering both virtual and onsite programs this Summer and I applaud them for leading the charge. Yes, this should be done carefully/ methodically. We can all agree that masks, hand-washing, social distancing, and taking temperatures are the right things to do. Yes, it will take time for students and staff alike to make things work and it won’t be easy at first. But, I believe that those schools which choose to proceed this Summer with hybrid programs will have a distinct advantage over those schools who wait until the Fall (or later). These schools will be able to see what is working or not, and continue to fine tune health protocols/procedures as they go along, according to their students specific needs, yet within the stated guidelines. These schools will be more prepared for the Fall, because of the extra time that they took over the Summer.

This surreal experience over the last 3 months should be an important lesson for all parents to make sure to keep a watchful eye on their disabled child’s educational rights, that they are never undermined, regardless of world circumstances or distractions. Our kids are really counting on us to always be that persistent voice that ensures their freedoms, educational and otherwise. It is a huge burden that comes with a heavy price, but a necessity for the rest of their lives. I wish it wasn’t so hard, particularly in times like these, and especially because it doesn’t have to be! There should never be only a “one size fits all” solution for any challenge, nor should only one choice be imposed upon everyone. In the case of special education, one way of teaching is not individualizing instruction according to need, it is the complete antithesis of it. This approach is a set up for failure of achievements every time.

Despite my frustrations, I try to remain positive, as is my nature. I am hopeful that with time, things will continue to get better on all fronts. Restrictions are being lifted, Summer is almost here, and our vacation at the beach starts next weekend, a respite Jim, Brian, and I desperately need and are looking forward to. My husband and I will continue to persevere on Brian’s behalf and hope that our educational leaders will do the right thing for the students entrusted to them, especially for the Fall and beyond…Can you hear it? The school bell is ringing and will not be silenced until the doors reopen for students. Let educational freedom ring for those who are ready to exercise this right on behalf of their special children. They are entitled to an appropriate education according to their individual needs and should have choices in accomplishing this aim. It is the right thing to do- anything less, is unacceptable.

On a final, more upbeat note, a very Happy Fathers Day to those wonderful Dads, Uncles, Nephews, Brothers, and Friends who mean everything to our children…❤️❤️❤️ You are a blessing and deserve huge accolades for all that you do, every day!

Until next time, thanks for reading! 😊

Hope Springs Eternal

Almost 8 weeks in home quarantine due to the coronavirus, and I finally hit my proverbial wall today. My body and mind are totally exhausted. I know that so many of you can relate! This new normal has effected all of us in profound ways that we never expected. While I did know that this inevitable energy drain would happen the longer the pandemic goes on, I didn’t think it would be so intense. I wish I could retreat to a sleep chamber and awake when this whole thing is over, but of course that is not an option. Our special children in particular are counting on us for so many things and the list is endless from sunrise to sunset. Never have I appreciated school staff more than this moment! I’ve had a lot of time to think about how amazing our educators are and all that they do for our kids. Boy, do I miss them! Despite my best efforts to replicate their lessons, I fall woefully short. Brian is not a virtual learner, though he is beginning to like seeing familiar faces and participating in music-oriented online activities. He is also participating in some of the therapy sessions, but otherwise he has no interest and it’s a real struggle for him. At the beginning of our home learning, I was concerned about not keeping up, but now, if we are able to eat 3 square meals, get showered/dressed, and take a daily walk, that is a good day. It’s amazing how priorities can change over time…

I have had to learn that I am not the equivalent of 10 school staff, despite my initial enthusiasm and delusion to think that I could be. I have also had to accept that every step of progress will have its own reward, whatever it is, and to focus on that. There will definitely be more “bad days”. Disrupted sleep, endless caretaking demands, lots of frustrations from being cooped up at home, will go on, but not forever, though it certainly feels that way right now. I have had a good cry or two (or three) during this unprecedented time, and despite feeling so sad/ frustrated at times over circumstances that I can’t control, I must confess that the tears have been cathartic in their own right. Letting out the frustrations/steam has been helpful, even though the circumstances haven’t changed.

We are very fortunate that our house is large enough for Jim, Brian, Mom, and I to “spread out” as we need to for privacy. As much as we are enjoying special time together, we also need moments to call our own. I covet those daily private times and can’t function without them now. The other day I took a long walk around the neighborhood by myself, something I had always done prior to the pandemic, but it had been several weeks since my last excursion. It felt like such a relief to be out alone in the fresh air with my own thoughts, not having to take care of anything or anyone, and to just BREATHE!! As the weather continues to warm up, I have promised myself that I will continue to take those solitary walks whenever possible, and they are, indeed, essential to both my mental and physical health. Everyone has to figure out ways and means to cope during this lockdown. And all of us need to experience hope to assure us that life will resume, even in a “new normal” way.

I experienced such hope, along with many fellow New Jerseyans, last weekend when our county parks reopened. Talk about kids in a candy store! All of us were giddy with excitement to leave the house ; Brian hadn’t been in a car in 7 weeks and literally bolted for the car door! We were fortunate enough to get a parking spot and thoroughly enjoyed Verona Park in all of its incredible Spring splendor. It was a wonderful afternoon of sights, fresh air, and a change of scenery at an ample social distance. I could envision the big smiles underneath people’s masks as we were walking along. Everyone was feeling grateful and normal, albeit for a few hours, with the hopes of repeating this sublime experience again. It is indeed my prayer, that slowly, but definitively, we will reopen and start to get on with our lives, for we can’t be in lockdown indefinitely. We need hope and tangible evidence that there is a future to look forward to outside of our homes. Going to the park last weekend was the first glimmer of hope that I believe many people needed to see!

There have definitely been valuable things that all of us have learned from the coronavirus, such as better hygienic practices. Wearing masks and keeping a social distance are also sound procedures, as we transition back to life outside our four walls. We can and should continue to do those things, as we start to reopen. Common sense should also remind us that elderly and medically fragile individuals should take extra precautions, while the rest of the healthy population proceeds back to work and eventually school, slowly, but surely. There are economic and other medical consequences from the coronavirus that our nation will be facing long after a vaccine for Covid 19 becomes available. It will definitely take time for Americans to recover from the fallout of this virus on so many levels. We will continue to need hope and resources for the times that are ahead, that is for sure!

Springtime in our backyard

In the meantime, today is a beautiful day in early May, with the signs of Spring all around us. The days are slowly becoming longer, warmer, and hopeful… I am dreaming of going to the beach this Summer, even at a social distance from other beach goers, and can smell the salt air of the ocean, see the waves crash on the shoreline, and feel my toes in the soft New Jersey sand. I can taste that smooth delicious custard ice cream, and can’t wait to have a big slice of pizza on the boardwalk. I bet you can envision these things too! Each day we are getting closer to Summer and things like this to look forward to… Our government hasn’t formally announced yet what will happen regarding the beaches, but I would like to think that they will open, in a “new normal way” of course, but at least they WILL open at some point , like other places will eventually as well. Life must go on! I know our children would also wholeheartedly agree and will be just as happy as we are when we can finally move forward with our lives again .

Until next time, thanks for reading! 😊

Don’t Lose Heart!

Sometimes beauty can come out of a very difficult situation if you are willing to look for it. This truth may not be apparent, though, especially in the middle of a pandemic. One is not necessarily inclined to believe that positive things can come out of a crisis. The coronavirus has certainly created a tremendous amount of hardship on so many levels for everyone. It’s still hard to fathom that life as we know it was turned on it’s head less than one month ago. Who knew that basic things like food shopping, or any kind of shopping for that matter, would have restrictions, procedures, and such long lines? Social distancing is a new term that we never heard of prior to March. Indefinite school closures, working remotely, and being together ALL the time is the new normal. All of it is unsettling at best and enough to drive us mentally crazy, especially with no end in sight at the moment. Our special children in particular, may be confused and anxious and most of us never envisioned home schooling our kids.

In our situation, virtual learning is not an option for Brian, as he learns best in the literal moment with actual people present. The one exception is a music class on YouTube that Brian’s teacher posted, which he loves to death! Homeschool for us consists of “learning as we go”, with Brian participating throughout the day in various activities of daily living and self care. We go for long walks in our neighborhood and sit outside on the deck. We read books, play games, watch shows/movies, and eat a lot! It’s a routine that works for us, at least for now, and I’m relieved that Brian is agreeable to it. Never has “one day at a time” been more meaningful than right now…

Another unexpected consequence of the coronavirus is everyone being home together. Under normal circumstances, we complain that we don’t have enough quality time with family due to the hectic pace of our lives. Now, the opposite is true. While we may never have such quality time with loved ones again, we also need personal space for ourselves and balance in the midst of this pandemic. It can be very hard to have moments of privacy and requires very intentional planning. We need to create routines of our own for our sanity and well being. Now more than ever, self care and safe spaces within our homes must be done for the long term if we are to endure. Looking for laughter in any form is my mission, along with meditation and prayer.. These “3 Amigos”, laughter, prayer, and meditation, hold the key to my mental and physical wellness. Without them, it would be impossible to go forward, especially while it’s still uncertain when we can resume our lives . Learning to let go of our traditional routines as we know them has been hardest of all. I’m sure that most of us will never take for granted again the most ordinary of freedoms, like outdooor mobility and shopping, once the coronavirus is behind us.

One of the silver linings of the coronavirus has been my Mom’s arrival to our home. She has been with us since last week and it’s where she needs to be. She is almost 89 years young and remarkably still lives on her own in the home where I grew up in. Our family home holds many precious family memories for Mom, especially those of my Dad. The current pandemic, however, has necessitated her relocation to our house.

All of us are adjusting pretty well to our “new normal”. Brian was initially confused by this transition, but he recovered quicker than I thought he would have. Mom’s presence has been absolutely wonderful for Brian, and he is her catharsis and “love bug”. They are sharing a special time together, creating memories, and sharing joy. It is a gift to witness and memories in the making that I will always cherish. I don’t take this for granted, even through those many moments of “cabin fever”. I remind myself when I feel moments of frustration that one day I will look back on this extended time spent together with Mom, Jim, and Brian with great fondness and appreciation, another silver lining of this unprecedented time in our lives.

I almost forgot that tomorrow is Easter Sunday, my favorite day of the year. Easter signifies Hope, Heaven, and Redemption. God has given us eternal life and His assurance that He will always be with us, even now through the coronavirus. It may not feel like it or seem so, especially with so much stress and uncertainty. In my personal experience, it’s exactly when God seems so silent or far away that He makes His love known. Perhaps it’s through a store clerk who offers to bring your full shopping cart to your car unsolicited , which happened to me this morning at Shop Rite. Or maybe it’s through the encouraging words of your neighbor during a social distance conversation. An unexpected phone call from an old friend or a card of encouragement also qualifies. And there are many more examples!

Life as we know it may not make sense or seems unfair right now, but we don’t walk alone and never will, especially in the difficult times. God’s Angels are all around us, doing amazing things to help us remain strong and get through this pandemic. We know them as the Heroes On The Front Lines, ie, healthcare workers, retail workers, etc. Our heroes may also be among us at home, providing us with the levity and sustenance to keep going. Hope during this very difficult time definitely requires faith, which is based on evidence that may not be apparent. But if you are willing to look within the imposed confines of our current world , chances are you will experience hope in the most unexpected ways. Remember, this pandemic WILL pass, we will get through this! Most likely you have been through many other challenges in your life, I know I have! With God’s loving grace, all things are possible!

Wishing you and your loved ones many moments of serendipity, laughter, and love, especially during this pandemic, because we need these things more than ever to cope! May we all be blessed by the angels put in our path and be a blessing to others as well ! Happy Easter! Until next time, thanks for reading. 😊

Coronavirus Survival 101

There is no doubt that the Coronavirus has dramatically changed life the way we know it, at least for the time being. Who would have ever guessed it’s profound effects around the globe? It’s hard to imagine right now how life was “normal” for Americans less than 2 weeks ago. There was no social distancing, remote learning, or supermarkets out of chicken. Being quarantined at home is not something any of us could have ever imagined and now it is our new reality that we must cope with. In many ways, this pandemic is proving to be quite challenging physically, emotionally, and mentally for many of us. We must manage, somehow, if we are to endure all that is required, especially if our current situation goes on indefinitely. The Coronavirus WILL eventually peak, decline, and cease at some point, but in the interim, how do we rise to the occasion on a daily basis until further notice? This is obviously a monumental task, especially with schools closed and our children being at home. Everyone thrives on a routine, particularly our special children, who for some, even a slight change in the schedule can cause a major disruption and result in difficult behaviors. It’s hard enough to handle such stress for even one day, let alone indefinitely, so what to do?

Unfortunately, there is no perfect answer, “one size fits all” solution. I can’t control the spread of the Coronavirus, as much as I would love to. But I can control my actions and reactions towards it, which can make all the difference mentally, physically, and emotionally. What choice do any of us really have otherwise? Anxiety, worry, and fear are quite normal during a time like this. I believe it is very important to acknowledge those feelings, yet, not remain paralyzed by them for too long. There will be additional “carnage” from the Coronavirus long after it leaves its destruction behind. There will be new cases of physical and mental illnesses, economic ruin for many, and more uncertainty. America, like the rest of the world, will have to recover and rebuild in many ways and in many areas over a long period of time . The thoughts of all these things is enough to drive anyone over the edge if you consider them for too long. In our own homes, we have our children to think about, first and foremost. They need us more than ever at this time to be healthy and strong for them.

The odds are stacked against us with so much going on in the world at large and also being stuck at home without the daily support of school staff. By the way, I have always respected teachers, but my admiration has increased a thousand-fold since school has closed! Although I do consider myself to know Brian better than anyone else, I also recognize my limitations as “teacher”, “home therapist”, physical, occupational, and speech therapist. Jack of all trades, master of none, definitely defines my abilities to a tee in each of these roles. I am learning daily to adjust my expectations, accept my limitations, and repeat the mantra: “ progress, not perfection”. Progress can mean making sure that Brian is fed, showered, and cared for each day. Progress is also making sure that my husband and I give each other space, work together as a team, and encourage one another. Progress is a successful shopping expedition for one package of chicken, a loaf of bread, and salad fixings for dinner that night. We keep expanding upon our meaning of “progress” as we go along and deliberately look for those opportunities daily, because it’s productive, positive, and keeps our minds engaged on things that we CAN control. We will feel better when we are productive and our perspective can improve when we are purposely looking for opportunities, whether a pandemic is going on or not. Ultimate progress for all of us, of course, is to remain healthy throughout this entire ordeal.

There are other considerations as well, despite the Coronavirus, such as the laundry, house cleaning, making meals, etc. These things must continue for our survival, but strangely enough, I find some solace in doing such mundane activities, probably because they are predictable and routine right now . It seems, though, like laundry has multiplied in our home since the Coronavirus, and there is only 3 of us! Other chores must also get done, so I have come to look at all of these necessities as “opportunities “ for Brian to practice “activities of daily living”, ( ADLs), and self help skills. These things are helping us to create a routine to our day which gives us a purpose and helps the time to pass. Brian’s teacher and therapists have done a fantastic job of providing educational/ therapeutic materials and continue to do so on a daily basis. The staff is checking in with us regularly and supporting our efforts at home. Initially, I was quite overwhelmed by the huge packet of educational resources that were sent home on the last day of school and daily “virtual blackboard learning”. At first, I felt guilty not being able to accomplish most of the “assignments” with Brian. Then I reminded myself that I have personal choices that I can make that will benefit Brian the most. Brian is not an “academic” and never will be. He is a vocational/ADL learner- plain and simple. So instead of driving myself crazy, I will extrapolate what I can from the available materials and apply them to learning when I can, as best as I can. For us, contextual learning works best, so for example, if we are eating breakfast, I can have Brian get his cereal bowl, pour out cereal, set the table, put dishes in the dishwasher afterwards, etc. All of the aforementioned steps work on ADL, occupational, physical, and speech skills simultaneously. There are many more “ natural” situations like this throughout the day, so as far as I am concerned, Brian is learning to practice a variety of skills that are specific to his educational plan in his natural environment, and that is good enough for me. Each day will vary as far as what gets done and how much is learned, but I have accepted this too, a very good choice for me as far as I am concerned.

Self -care continues to be paramount for all special needs parents, especially during this time of isolation. It will take time and consideration to come up with a “Self-Care Survival Plan”, but we are all worth that kind of investment! Just as important, is making sure to execute your plan daily. Here is a list of 10 “Self-Care Essentials” that have been helpful for me:

1. Maintaining daily communication with family and friends via email, phone calls, or texts.

2. Doing some form of exercise outside or in the house for 30 minutes

3. Putting headphones on and listening to favorite music

4. Reading for pleasure- no special needs materials allowed!

5. Putting plans in place for when the pandemic ends- something to look forward to!

6. Indulging in body lotions, perfumes, fragrant hair products, and long hot showers

7. Meditation and prayer for 30 minutes- hard to be still at first, but I am starting to make progress.

8. Phone A Friend- Calling one friend a day to connect and check-in

9. Writing in my journal- whatever comes to my mind, it has been quite interesting!

10. Indulging in one favorite food or beverage treat daily- now is not the time to deprive ourselves!

There have been many “silver linings” to the Coronavirus. These include a deeper appreciation of our health, family members, or the fact that we have a roof over our heads and food on the table, even though food shopping these days can be quite challenging. We don’t take as much for granted, we know things could always be worse, and most importantly, we know that this pandemic WILL pass. We are resilient and have been through much worse. Ten years ago, I was in the midst of chemotherapy for colon cancer , my husband had been unemployed for over a year, and Brian was having challenges at school. Those were extremely difficult times and it would take several more months until Jim found full-time employment and I physically and mentally recovered. Brian’s school situation eventually improved and we slowly, but surely, rebuilt our lives. It was very hard, but we got through with God’s help, faith, our family, friends, and the positive choices that we made. Many people have gone through similar adversities and came through stronger on the other side. I have no doubt that we will be get through this pandemic too, hard as it is, with determination and support from one another.

I wish you and your family Joy, despite these trying times, Hope, when it seems in short supply, Faith, in the good that is yet to come, and Love, especially right now, and always. Until we meet again, thanks for reading!😊

Did You Know?

Sometimes when people meet Brian for the first time, they will ask me after a short while whether I knew before Brian was born that he had Down syndrome. This question has actually been asked of me many times over the years. I understand a person’s curiosity on the subject and can envision what they must be thinking as they ask this question and why they are asking it in the first place. I’m sure for some, it’s hard to imagine not knowing such information ahead of time, while for others, it wouldn’t make a difference. I happen to fall into the latter category for very specific reasons.

For my husband and I, the outcome didn’t matter. We believe all life is sacred and a gift from God. While knowledge is certainly power, there is also a risk of a miscarriage with an amniocentesis. Any risk was too great for us to consider, especially since we thought that this would be our only opportunity to have a child of our own. Regardless, it would not have changed anything for us, except for having information ahead of time about Down syndrome. Ironically, this was the only time in my life that I did NOT want to know anything regarding Brian ahead of time. I wanted to focus strictly on my health and the health of the baby- anything more would have been too stressful. I didn’t want to impose unnecessary stress on an outcome that was already predetermined. There would be plenty of time after Brian’s arrival to read up on everything that Jim and I would need to know in order to care for him going forward. This ended up being the right decision for us and was exactly what happened. In the meantime, I wanted to remain positive and hopeful that we would have a healthy, typical baby. However, things didn’t go according to plan in the way that we had hoped during the pregnancy. In fact, it was quite the rollercoaster ride of ups and downs from almost the very beginning.

Brian was diagnosed with a fold in his neck called a nuchal fold translucency at 9 weeks old, followed by a hole in the center of his heart at 18 weeks old. I was then diagnosed with intrauterine growth restriction (IUGR) where Brian stopped growing at 7 months, followed by bedrest in the hospital for 5 weeks. Talk about eventful! I didn’t need an amniocentesis to tell me that Brian had Down syndrome, I already knew it in my heart and had plenty of time to consider it during my bospital stay. Yet, a part of me wanted to remain hopeful, perhaps there was still a chance that these anomalies were limited unto themselves and had nothing to do whatsoever with a developmental disability. So, I hoped, prayed, gained 25 lbs on bed rest, and went to Lamaze classes in the hospital to keep my mind occupied. I also knew deep down that a C-Section, (with LOTS of anesthesia), was in my future and this also happened. What I wasn’t prepared for was the overwhelming feeling of sadness, grief, and fear that followed, once Brian was born at 36 weeks and 5 lbs later. I couldn’t believe how tiny he was! There were oven-stuffer roasters twice his size! How would we ever care for this baby who would need so much in every way from the moment of his arrival and for the rest of his life?

Fast forward from Brian’s birth until now. Jim and I immediately became students of Brian and are still learning to this day. I didn’t know there was so much entailed in caring for a disabled child. I didn’t know how truly overwhelmed and exhausted I would feel. I didn’t know how much I could deeply love until Brian was born. I didn’t know that someone could depend on you so much and always will. I didn’t know that it was possible to care so deeply for a child so precious until I held Brian. I didn’t know the price it would cost, or the sacrifices that would need to be made in order to raise Brian and to care for him. I didn’t know how much I would cry and continue to do so when I see how my son has and will always struggle. I didn’t know that I would become a strong advocate for my son. I really didn’t know that there was such a thing as Down syndrome and autism together! I didn’t know that I could feel so depressed and hopeless, especially in the early months following the dual diagnosis. I didn’t know that I would meet some of the most incredible people because of Brian and his disabilities . And there is so much more that I don’t know… I am still learning and always will be, but there are also lessons that I have mastered, and things that I do know with all of my heart and being…

I do know that I am meant to be Brian’s Mom and Jim is meant to be his Dad. I also know that Brian is a blessing to all who meet him. I know that Brian has many purposes in this life, some apparent to me, others not yet revealed, but all for the good. I know that Brian will continue to make his mark on the world, in his own way, one day at a time. I know that Brian loves with all of his heart. I know that Brian will always struggle with his challenges. I know that Brian has built character in me in ways that were often very difficult, but ultimately for his good and mine. I know that Brian and I have a deep love for each other, a gift I am forever grateful for. I know I often get impatient and frustrated by Brian’s disabilities, but he is incredibly understanding and forgiving, despite my human flaws. I know that one day, I will no longer have the ability to care for Brian the way I do right now, and this scares me.. I know that despite this particular fear, (and many others), that God will always make a way for Brian, because He created him, loves him, and has a plan for him, even though the details of this plan are yet to be revealed. I know that my faith has always served me well throughout my entire life. I know that ultimately, all things will work together for the good.

While I did not know that Brian had Down syndrome in utero, there were many things since his birth that I have come to know and continue to learn, both willingly and unwillingly. This is the eventful life journey that we share with Brian: milestones, joys, a deep mutual love, heartaches and heartbreaks. This is not the life that I would have chosen for myself if I knew ahead of time what the implications of my choice would have meant. Yet, I can’t imagine my life without my son, despite everything that has happened.. This much I know with 1000% certainty and with all of my heart. ❤️❤️❤️❤️

Until next time, thanks for reading! 😊👍🏻

I

P

Talk To Me…

My husband and I come from a large extended family of gregarious talkers, so there is never a lack of conversation whenever all of us get together. Our gatherings are fun, often spirited, and memorable, with the time spent going much too quickly. It took Brian a long time to be comfortable with these extended family paloozas. Even today, Brian still needs his space to adapt to a family party, for walking into a crowded room is too overwhelming. It’s always better if we arrive first, greeting relatives as they enter, one at a time. The same holds true on our own home turf: Brian will find a comfortable space and prefers if you come to him. In the early years, we often had to leave various places due to the sensory overload of people and unfamiliar surroundings. Sounds and sights during that time were just too much for Brian to process. We would leave these events feeling sad and isolated, wondering if it would ever be possible to be our gregarious selves again or if it was our fate to remain contained within the walls of our home. I often thought it was an especially cruel blow for Brian that he could not speak and tell us what was on his mind, unlike the rest of us spirited conversationalists in the family.

I still wish I could hear my son speak, even today, and often dream about it vividly…..In my dreams, Brian and I have had these amazing conversations , covering various topics of interest. I am flabbergasted by Brian’s insights, his astute observations of people, places, and things. He has preferences, opinions, passions, and dislikes, and has no problem expressing them. He has hopes for today and tomorrow, as well as plans for his future. He loves his family, school, and community activities and assures me that everything is and will continue to be OK. He looks deeply into my eyes with a knowing stare and says: “You worry too much, Mom!” I agree: “Yes, Son, you are right. I try not to worry so much. I think most of the time I take things in my stride, but sometimes, I just get so overwhelmed. You go through a lot and at times I feel so helpless, as I can’t always make things better. That is so hard for a parent . That is the nature of motherhood and the price of love.” Brian gives me one of his reassuring, “death grip” hugs, then suddenly the dream is over, leaving me to wonder long afterwards if perhaps all of this really happened after all….

Anything is certainly possible, so maybe Brian will acquire more language over time. He does say “Mom” and “Dad” now, and this only happened in the past year. I can see Brian positioning his mouth, trying to the imitate sounds that we make. However, apraxia makes this goal very difficult; the disconnect between the brain and oral motor functions is like trying to climb a mountain without the proper gear. Still, I am hopeful of what we may hear Brian say one day in the future. The fact that he could finally utter two of the most important words in the world was a miracle. I am very realistic though, and don’t expect Brian to engage in a conversation, but some words here and there over time would be wonderful. It would especially come in handy when Brian is in distress or sick, like he has been this past week. We don’t always know at first what is bothering him and often have to go by body language and other signs to reach a conclusion or diagnosis. This can be frustrating for everyone concerned and adds to the angst and exhaustion that we all feel.

While we don’t always know what Brian is thinking, I am grateful that there are tools for non-verbal kids to express themselves with, such as Picture Exchange Communication (PECs), sign language, and various speech apps. Brian does use a speech app called “Proloquo “ on his iPad to communicate his wants and needs. There is no perfect system and each one has its pros and cons, but these resources do give us an insight as to what Brian is thinking about at times and have helped him to initiate “conversation”. It is our hope that Brian will continue to expand his vocabulary with Proloquo, and become more spontaneous in using it. Who knows, perhaps there will be new means of augmentative communication in the future that will increase both receptive and expressive language in a totally different way. You just never know and I like to remain hopeful of what could be, not only in communication, but in all facets of Brian’s life.

Being engaged with the community also involves communication, so in addition to an augmentative communication device, Brian also carries a Velcro wallet with a “student picture ID” card that lists his home address and my cell phone number. This tells people who Brian is and who to contact, should Brian ever get separated from us. I shudder to even entertain this thought, but things can and do unfortunately happen. Brian is learning to show his ID when asked his name, and is making food purchases at his school cafe with a few dollars each day. Brian also has a name badge that he will use starting next month at a local pizzeria where he will distribute take out menus to customers a few hours a week. My husband and I are excited for Brian to have opportunities like these to engage with others by any means of communication available that will accomplish this goal. I believe such experiences will expand Brian’s communication opportunities and hopefully encourages him to be more self -motivated with expressing himself over time, with LOTS of practice, of course!

I’m glad that Brian will always have different ways of communicating and engaging with others, otherwise his world would be a very lonely place. Regardless of these opportunities, I still look forward to the day when my dreams of conversing with Brian will come true, in all of their wonderful, extraordinary detail! We will have so much to talk about! I suppose that is exactly why eternity is necessary, because time restrictions won’t work for us. All of the unspoken words, or times that I wondered exactly what Brian was thinking or feeling will be revealed! How amazing that will be! I’m sure Brian’s first words will be: “See, Mom! I told you everything was going to be OK! Now can I play on my iPad?” 🤣🤣

Until next time, thanks for reading! 😊

O

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! 😊

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