We dedicate our lives and resources to helping our disabled children live their best lives. This is no small feat and requires a tremendous amount of time, sacrifice, and effort. This intense labor of love can slowly erode our sensibilities and physicality if we are not careful. I would have never guessed prior to having my son, Brian, exactly how much would be necessary to raise a special needs child or how intense the journey would be. I would have never dreamed that Brian would still be doing certain things or exhibiting particular behaviors that toddlers are noted for, yet, 17 years later, here we are in that same place and always will be. Of course there is progress as well, but not in the ways that I would have ever thought would happen when Brian was first born. So, as Brian continually learns in his own way and time, adapting to changes and transitions every day, so must I. Regardless of whether it’s a good or bad day for our kids, we always have to be prepared mentally and physically to help them today, tomorrow, and for the rest of their lives. It’s a huge responsibility, a heavy weight, and many days unimaginable to me, especially as I get older. Living in the here and now with Brian is more than enough each day. I hope to make it into the future,( some days are too overwhelming to even consider beyond the next hour) but in order for that to happen, I have to find a way of living well in the present, one day at a time.

Before we became parents, we had careers, hobbies, interests, and dreams. Some of us may still be able to do these things and simultaneously raise a disabled child, but for many of us, our “former lives” were put on indefinite hold once our children were born. There was no time to do activities outside of the special needs realm, as our children needed our full attention for medical and educational reasons. We are still going at an incredible pace, despite the addition of resources and people along the way to help us, and our former lives are just a distant memory. Some of us may still work outside of the home, leaving us with very little time, if any, for ourselves. We are multi-tasking, marathon, advocating warriors! We seem invincible, and actually, we are for quite a while, until one day, BOOM! We have hit another brick wall of special needs parenting, but this time, we are unable to climb over it.

Nothing can make one hit a brick wall quicker than raising a severely disabled child during a pandemic, especially during the first 3 months of Covid 19. Endless hours of being indoors and virtual learning almost drove me to the mental edge. I discovered that hitting this particular brick wall was actually a blessing in disguise later on, though certainly not when it initially happened. So, I was faced with the options of either “ lying down” for the rest of the pandemic or “getting up”. I really wanted to remain lying down, in a fetal position specifically at first, but luckily had enough resolve left to know that this was not what I REALLY wanted, it just felt that way in that particular moment. But I also knew that things were going to have to change and only I could make those changes for myself. This was the difficult part- how to do I proceed when I’ve put my own needs on the back burner for so long? Also how does one do self-care on a regular basis while raising a disabled child who needs so much?

I didn’t have the answer to those questions, but I knew it had to happen somehow AND as a permanent life change so I could avoid hitting brick walls going forward. Then I thought about prior to having Brian what I enjoyed in the past and how I could possibly incorporate some of those things back into my life today. Was this possible? Yes! Would it be easy? Absolutely not! Will Brian and I benefit from such changes, even little ones, for the better? 100% affirmative! My Top 9 Essentials were born as a result of this, my blueprint for living my best life, moment by moment. These are things that all of us already know and love, but perhaps we have just forgotten them in the midst of trying times while caring for our kids.

Essential #1: Friends

Through thick and thin, highs and lows, no one knows us better or can offer us more support than our friends. Sometimes, family members are also our close friends, but more often, the friends we choose end up being like family. Brian has

introduced me to many wonderful special needs parents over the years , one of the blessings of his disability. I also love my other friends from my past and present, whether we met in school, work, or through a hobby. Friendship is one of the most precious gifts in life that is essential to our well being.

Essential #2: Hobbies/Interests

Remember these? It seems like a million years ago, but once upon a time, we were able to participate in activities on a regular basis that were fun! I used to love hiking with the Appalachian Mountain Club, cycling, the weekly bowling league, or an adult school music class after work. My favorite hobby was to travel both in and outside of the United States. There are so many wonderful places to explore and I was most fortunate to have had this opportunity. While international travel is no longer an option (at least for the moment), there are still many opportunities to see, even local places of beauty, and I make it a priority to visit them.

Essential #3: Dreams

I believe we should never stop dreaming of what is possible in life and make a plan to achieve our hearts desires over time . For example, I have had this dream that one day I will make a cross country trip throughout the United States and will see the places I’ve always wanted to visit. There would be a ton of logistics to work out beforehand and this adventure is certainly not feasible at the moment, however, is it possible one day? Yes it is! I have begun my research to make it happen ! The other dream I have is for Brian, which was inspired recently by another special needs mom. My friend told me that she plans to create a business for her disabled son so that he has viable employment upon completion of school. She has ideas and a vision of what it would look like and is starting to create a business plan. I was truly inspired by this and it got me thinking whether I could do something similar for Brian. I have no idea what this will look like at the moment, but I would love to help Brian find his “niche” and am dreaming about the possibilities now, not ruling anything out…

Essential #4: A Therapist

Don’t underestimate the power of an objective listener, especially when life gets too difficult to handle alone. I admit that I was initially very stubborn and proud to seek professional counseling during critical times in my life, but eventually the situation would get the best of me and I had no choice. It was the best decision I ever made! I have been the recipient of sage advice before and after Brian was born and am definitely the better for it! Sometimes, family and friends are too close to ultimately be helpful. Sometimes, you just want to be heard, and taught how to use the tools that you already have within you to heal. Therapists have excellent tools to accomplish this goal!

Essential #5: A Doctor

Similar to Essential #4, our physical selves are often in need of healing and require medical intervention. Since we have a huge task in caring for our kids, we have to take care of ourselves first. That means preventative medicine: not missing doctor appointments, following through with physician recommendations, eating well, etc. Our kids are really counting on us to be there for them and this important self care will make that possible.

Essential #6: Distractions

I’m a huge believer in distractions that come in all shapes and sizes: a good read, a great joke, a mindless TV program, virtually anything that gives your mind a rest from your troubles and a focus on fun! We need copious amounts of lighthearted distractions daily as we live the special needs life- I can’t do without them!

Essential #7: Laughter/Humor

One of the most important essentials in the special needs parents “tool box” is a sense of humor. As much as there have been difficult/ frustrating times with our kids, there have also been funny moments with them too.

We need to find humor and should seek it always, no matter what life brings. We can always find a reason to laugh if we are willing . Our bodies and mind will appreciate it too and we will often be the better for it.

Essential #8: Sleep

Sleep, Wonderful Sleep! I want you to know how much I have missed you in recent nights. Please don’t elude me; I need you more than ever! It is impossible to raise my son or function in general without you. I look forward to reuniting with you again very soon. I am currently pursuing various solutions to see what will ultimately work best. You are my most important essential at the moment. Signed, Sleep Deprived ( But Not For Long)

Essential #9: Hair Color (Or Whatever Truly Floats Your Boat)

I realize that hair color is not everyone’s priority, but I have always loved going to the hair salon. I know many ladies can relate to this important essential. There is something about this ritual that is so relaxing and you just feel better when you’ve had your hair cut/ colored and styled. This is my “every 6 week essential” and is right up there with sleep! I would also add lipstick as an essential, although there’s been little of that lately due to mask wearing, but this definitely is my favorite fashion combo.

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“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! 😊

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