Last week, I had an opportunity to share my journey as a special needs caretaker to the United Way Caregivers Coalition Of Morris County.  Boy, was I nervous! I consider myself to be more of a writer than a presenter, but was proud of myself for actually trying, as I hadn’t done any  public speaking since college. Even better that I actually made some sense! Here is the transcript from that day…

My name is Brenda McDonnell and I am the primary caretaker of my son, Brian, who was born with Down syndrome, then diagnosed with autism at 30 months old. Brian is now 14.5 years old, and the light of my life! Brian will always require caretaking and his needs are many and varied. I have been a caretaker for both of  my parents as it pertained to their physical and emotional health, but nothing compares to the daily caretaking of a child with special needs. It is a lifetime assignment that requires great physical, emotional, and spiritual strength.

Nothing ever quite prepares you to be a parent either, as I quickly learned when Brian was born, despite the many books I voraciously read ahead of time. I was on bedrest in the hospital for a month prior to Brian’s birth and had lots of time to read and contemplate what motherhood would be like. The perception and actual reality of this experience couldn’t have been more different. Brian’s arrival into the world was a mixture of great joy, sadness, and fear, of both the unknown and what my husband and I knew would be challenging. 

Brian was born with a large hole in his heart that required open heart surgery at 3 months old. And so our eventful journey began with a plethora of appointments, sleep deprivation, and learning step-by-step how to take care of this precious baby. More medical issues were to follow, then learning the ropes of Early Intervention Therapies, Special Education, social activities for special needs, etc. So much to learn and navigate through-and  it continues to be an experience like no other! 

Brian is my best teacher and has demonstrated through his incredible resilience and sweet nature how to be courageous and strong many times over these past 14+ years, especially when I have been often  afraid and heartbroken. If you had  asked me when Brian was first born what I had envisioned parenting a child with special needs was going to be like, I would have never imagined it was going to be this hard. I didn’t realize that  the smallest of achievements would always  be so monumental in our world.  And who would have ever guessed that my son  would still need assistance in the bathroom at 14 years old?  I never thought in my wildest dreams that Brian would be non-verbal either- how is this even possible when he comes from a long line of gregarious talkers? And on and on the list goes..

I also never imagined that I could or would be the advocate that I am today for my son. By the grace of God, the support of other local special needs families, and through the encouragement of my husband, family, and Brian himself, I am able to forge ahead. Brian has a rich, full life with educational and social opportunities. I go to sleep most nights at peace, knowing that everything is being done to help Brian live his best life, at least for the present time. The future is what is really scary. We specifically moved to a particular area to provide those opportunities for Brian. It has and always will take a lot of people and resources to help us, help Brian.

Of course there is a high price to be paid for caretaking and advocating over a long period of time.  Physical and emotional depletion are inevitable, especially after many years. There are many days when I still feel very overwhelmed by Brian’s needs and am afraid of the future, especially when my husband and I are no longer here. The challenges threaten to overtake the day, yet they can not ultimately be victorious. I may lose the battle ( which has happened numerous times), but I can not lose the war- Brian is counting on me. Daily self-care is a must- did you know that my caregiving needs come in a convenient” 6-pack” ?! Here they are:😊👍🏻 

Brenda’s Caregiving Needs

1. Respite- a break in any form/ for any length of time counts and is necessary for recharging physically/mentally

2. Sleep- a very basic need, but often underrated for its amazing effect on energy and perspective 

3. Reading-A good book is my mental escape, especially when the going gets tough- I try to read something not Special- Ed related every day for 30 minutes- it really helps me to stay in the present moment!

4. Exercise- Planet Fitness is less than 2 miles from my home- exercising even 30 minutes, 2x per week, changes my mental outlook

5. Gal Pals- Loyal girlfriends are the best elixir for the heart and soul. They are your anchor in a storm, always have your back, and protect your  tender heart. I am blessed to have such friends.

6. Cocktail- Never underestimate the power of a glass of wine at the end of a tough day in the special need trenches! 

Once I take care of myself, I am able to share some valuable lessons I have learned along the way. Brian has taught me so many! Here are a few: 

Lessons Learned As A Special Needs Mom

1. You can’t be a perfectionist and a Special needs parent simultaneously. Our kids do things in their own way and and in their own time. Expectations must always be very flexible with our kids and ourselves.

2. I may often feel isolated , but I am never alone. God is with me and so are many other special families, who understand these feelings, even though the struggles are often very different. 

3. Laughter continues to be the best medicine.

4. I must have time alone- sometimes it’s in the bathroom with the door locked!

5. While Brian’s needs are complex and life-long, he was created, like all of us, with a great purpose by God. Brian has impacted the world in a wonderful way just by being himself and is accepted by most people he encounters for who he is.

6. Crying is good therapy, whether alone or with a trusted friend. Life can be really  hard with our kids sometimes and we need a “release valve” in order to move forward. I know I certainly do! 

This concludes my lessons learned as a special needs Mom caretaker and this particular blog. If you have read this far, I applaud you! Many blessings on you, until we meet again. Xoxo 😊

In the previous blog, I had presented the first 2 of 12 steps that have helped me daily in my journey as a special needs Mom. These 12 Steps are modeled after those  founded in  the Alanon Program, but they can really be applied to a myriad of life challenges. I have learned the importance of having a “toolbox” that can be used when the going gets tough both in the short term and for the long haul. Some days, these steps are all I have left to cling to.  So, let’s continue….

Step 3 

Made a decision to turn my will and my life over to the care of God as I understand him.

This is a conscious and daily decision for me. It does not come easily! I am used to taking charge and managing all aspects of Brian’s life, aka, being an advocate for my son. I make numerous decisions for him regarding his physical, educational, and social well-being. It is a lifelong venture that is relentless,  sometimes exhilarating , and often exhausting. I am depending upon a lot of people to help me help Brian. It really does take a village  to raise our kids! In the process,  I can get easily overwhelmed and most certainly have over the past 14 years. It does not get easier as our kids get older, as there are always additional challenges and concerns. I have sometimes been literally on my knees asking God for help when it all becomes too much. I believe, but was not really trusting my Higher Power. My faith needs to be strengthened to know that somehow, everything will be OK, even when at the time of crisis, things appear  so hopeless. I often think about Brian’s future when my husband and I are gone and become paralyzed by fear. I try not to do that and just live one day at a time, but it’s not always possible. This is where the conscious decision to trust God and turn my will, and all of my concerns, over to His care comes into play- even when I don’t feel like it or believe, but realize I am at the end of myself… If I do my best, He will provide the rest, whatever I need, not  just for Brian, but for me too, in all areas of my life. These things don’t happen according to my timetable of course, lol, but I have learned and have seen over and over again in my life and in Brian’s, that God is faithful and trustworthy in His provisions of the people and resources that are needed, whether for Brian or  for myself. .It’s good to know that we don’t have to carry our burdens alone- I am really relieved quite frankly!

Step 4

Made a searching and fearless moral inventory of ourselves 

I find this Step to be quite intimidating because it requires me to be totally honest about my motivations when I do things for Brian. Is it always in his best interest or am I just doing something to make me feel better? It’s an ongoing struggle.. One area in particular that I found difficult to reconcile for the longest time was Brian’s academic abilities. I was never under any grand illusions that Brian would be star student, but I assumed he would at least know his letters, numbers, be able to read and write, etc. I thought he just needed extra time, a better teacher, a new learning approach etc. I pushed very hard in every way imaginable to make this happen for a long time… However, every Individualized Educational Plan (IEP) over the past 11 years has shown only minimal improvement in “academics”overall-ouch-that’s been very painful to read and accept- but only for me- not for my son, and THAT is what really matters! I realize my background as a teacher and a Mother’s heart are the reasons for my disappointment, however, it doesn’t mean that Brian has not learned some of these basics and will continue to- he has! 😊 He has also shown a stronger aptitude towards vocational education and is doing well and is learning! I have learned (and continue to learn) to adjust my expectations and  to focus more on Brian’s strengths, as it should be. The same holds true for community activities, sports, etc. I want Brian to be exposed to various things and to try them, but I look at MY motivation first now  before doing so- is this in Brian’s best interest? Is it worth it? How important is it really?  Will it ultimately make a difference in his life or make him happy? Often we need time and practice to do new things for a while in order to answer these questions and if I pay very close attention to Brian, he will often tell me very clearly  himself what he wants to do! 😊👍🏻

Time for a Blog Break! 👍🏻 Four Steps down and 8 more to go. Thanks for reading up to this point- many blessings on you, until we meet again. 😊

Everyone needs a 12 Step Program- you’ve heard it here first! And perhaps no one needs this more than special needs families. But what exactly does this mean?  How would 12 Steps make a difference in my life? Now, you may or may not agree with this premise, or even understand what  I am saying, so let me further explain.. 

I’ve attended Alanon support group meetings for many years  in order to understand those beloved ones in my life who struggle with addiction, as well as those who are now  in recovery. The Alanon program is based on 12 powerful, life-changing principles. These steps are truly “a blueprint for living” for those of us who have been profoundly affected by the addictive behavior of others. Over a very long period of time, I slowly came  to understand  how my own behavior could also have a positive or negative impact on these relationships. I also learned  what creating healthy boundaries with others meant and how to take care of myself. It was all about “keeping the focus on me”and not interfering in others affairs. This was definitely not easy! I wanted to give unsolicited advice to be helpful,  but I learned repeatedly that this practice  would hinder the recovery process. Over time, I realized that these same 12 Steps could also be successfully applied to other  life challenges. Sooner or later, each one of us will need a life raft to navigate stormy seas, lest we drown…

It was during a low point last winter,  when  I realized that the 12 Steps could be my roadmap to parenting my special needs son. I  had felt a great deal of despair  and  depression earlier this year- the dark, cold weather certainly didn’t help, but it was much more than that. My husband travels frequently for work and during that particular time, he was in Japan.  The long distance exacerbated my loneliness and feeling of isolation. Brian was having severe sensory issues and transition problems last winter. The school day was being adversely affected, as well as the Home Therapy program during this time. Brian kept throwing things, turning lights on and off, getting frustrated, etc.  I felt so utterly powerless and out of control. It’s especially during moments like these that I wish with all of my heart that Brian could just speak- any words at all! Like a doctor, I just wanted to “cure” my son of what was ailing him in that moment. I fell asleep hard one night  out of sheer exhaustion and really did not want to get out of bed the next morning. Once I got Brian off to school, I went about my daily routine and happened to open up one of my Alanon daily meditation books to the page where the 12 Steps were listed. Although I had read them hundreds of times before, this time, my interpretation of what I was reading was different..Call it a “light bulb moment”( I truly believe it was Devine Intervention), but I was prompted to go back to the Alanon 12 Steps and read them again, gaining a new perspective..I concluded that these very same steps could be applied to raising a child with disabilities. Or any major challenge in life quite frankly, but since this is a special needs blog, I will explain from this point of view, so here it goes: 

Step I

“I admitted that I was powerless (over Brian’s disabilities), that my life had become unmanageable.”

This is absolutely true.  I am powerless over my son’s disabilities; I can’t make them disappear. I wish I could! The fact that I can’t frustrates me, especially when Brian is adversely affected by his challenges. I feel life becoming unmanageable when these episodes happen. I hate that out of control feeling, but, I have to remind myself that I am not helpless. I try to provide my son with the love, support, and resources that he needs, to be the best person that he can be- this is emPOWERing. My life becomes more manageable when I know I am doing my best, one day at a time. It’s all about progress, not perfection. I must remind myself of these truths when the going gets tough. Feelings are not facts.

Step 2

“Came to believe that a Power greater than myself could restore me to sanity”

I believe this with all of my heart, even when I don’t feel it. I call this Power greater than myself, “God”.  I have seen evidence of God’s Power throughout  my life, both in trials and tribulations. I believe God restores my sanity in the special needs journey with Brian and will always continue to do so. He made  Brian, loves him more than I can imagine, and has created him with great purpose in mind. I have been privileged to witness Brian’s powerful impact on others, just by being who he is. Most of these encounters have been heartwarming, but certainly not all of them. Regardless, I see and understand that Goodwill Ambassador Brian has an important job to do during his time on earth, and is a vital link in the chain, just like each one of us. I cling to these truths like white on rice and remind myself of them when I feel I am going insane during those very difficult times. Like a new exercise, it takes time, patience, and practice for these things to take root. I’m relieved that I can be restored to sanity, well, at least most of the time! 😊

If you have read all the way to this point, you are to be commended!  I will continue with the remaining 10 Steps in the next blog and pray you may have been encouraged in some way by this one. Until we meet again, thanks for reading! 😊👍🏻

They called us “One In A Hundred”. For every 100 applicants interviewed by the now defunct People Express Airlines (PEX) of the 1980s, only 1 of us were hired. We were that extraordinary! We were Customer Service Managers (CSMs) who flew as flight attendants, worked as ground personnel, and held  many other internal positions within the company. We worked hard, but played hard too. Many of us were fresh out of college, seeking adventure, travel, and business opportunities. We accomplished all of that and developed a business skill set that was eventually transferable to other careers. People Express truly left a lasting impression on the hearts of the employees who worked there, as evidenced by the 30 year reunion of almost 1000 people that took place this weekend in Newark, NJ, where the whole journey began.

Deregulation of the airline industry back in the late ’70s made it possible for everyone to fly, and the launch of People Express in 1981 made affordable air fares possible. Eventually, over expansion and competitive airfares brought on the demise of People Express in 1987, but many of the friendships that were established back then have remained strongly intact today. Our circle of “gal pals” is just one of the many groups of friends who still keep in touch all these years later. We have been able to meet in various locations throughout the country from time to time over these past 3 decades. I am always amazed how we pick up exactly where we last left off! I revert back to that silly 20-something, whenever I am with these wonderful ladies. All of us have witnessed both good and bad times in each other’s lives and have been there with  loving support. We laugh  until we cry and make the most mundane moments hilarious ones. We are forever friends, the gift that just keeps on giving! It was so wonderful to also see many other  former colleagues and to reminisce about old times with them this weekend.  I never knew I had so many words in me! This moment in time was as historical as the airline itself and I’m so glad that I could be a part of it. 

Of course, life is so different now. I used to travel around the world and now I mostly drive around town! Careers and priorities have changed, just like the seasons. I never would have guessed back 30 years ago what my life would be like today. I suppose that is true for most special needs families. We forget in the daily challenges of raising our kids that we were once single and had a totally different life before we had them. The People Express reunion this weekend reminded me that it is important to acknowledge and honor that part of our lives from time to time, a very vital part of the “self care” that we NEED!  I was able to play and take a break from home responsibilities this weekend because of my husband and niece. I am truly grateful for that. It was a huge gift and one that I throughly enjoyed. It’s actually the best gift that a special needs family can receive- time away to reconnect with the people, places, and things that give them joy.

Don Burr, the founder of People Express,  always believed in a “People First” philosophy regarding both customers and employees. We, as special needs parents, live  this philosophy every single day with our children. Like People Express CSMs, we wear many hats  and are expected to play multiple roles on behalf of our kids. Our hours “on the job” are also very long and in our world, can really wear us down! It’s a very difficult part of just what we do, because we love our kids and they are depending on us. But what about ourselves? Aren’t we “people first” too?!

Every special needs family I know has a unique set of circunstances with their disabled children. Some families have  much more support and opportunities than others to take care of themselves, a spectrum of its own that varies in each situation. Some families also have more than their fair share of challenges with no support whatsoever. Weekends away are never a possibility and they are often the people who need it the most. 😞  I wish there was a solution, but there is no perfect one. In the meantime, I  believe special needs awareness and involvement should continue within extended families and communities, so that the needs can be identified of those who require a break, whether it be for a few hours or a few days. I can assure you, that the “people first” investment of special needs parents will reap major benefits for not only their physical and mental well being, but also for  those of their children. It’s always easier to take care of your child when you’ve had a break, a good night’s sleep, and an adult beverage- the perfect trifecta! As the saying goes, “put your oxygen mask on first, before you place one on the person next to you”. Once a flight attendant, always a flight attendant. 🤣

Until we meet again, thanks for reading!😊

• While conducting a business transaction for Brian’s special needs trust the other day, the bank teller assisting me commented how tragic it is that Brian was born disabled-whoa! I was not expecting this at all!  How often have you heard someone say that?!

I have learned over time, by my own mistakes, and with experience,  to consider and process what is said when someone makes a statement about Brian’s special needs, THEN respond.  I was prepared to address the comment, but wanted to do so in a way that was informative, without being defensive. Sometimes in the past I have reacted, instead of being reflective first, depending on the day, a bad night’s sleep, or whatever the Challenge Dujour was. 

I first showed the teller a picture of my beautiful boy, speaking of his many virtues, despite the hardships and challenges that his disabilities bring. I could see by this woman’s reaction that she honestly had no idea that a marriage of disability and happiness was even remotely possible. She was teary-eyed when she confessed that she didn’t realize that blessings could coexist with disabilities. It was a powerful moment for both of us, as I experienced my own reminder of how special our kids truly are. They have a lot to teach the world about who they are, what they CAN do,  and what they give so freely:  unconditional love, total trust, and a child-like wonder that warms the heart and inspires the soul. It took a long time for me to really believe these things about Brian, as once upon a time, I was more focused on his limitations, instead of the wonderful person that he is. 

When Brian was first born, I, like the bank teller, also felt that his disability of Down syndrome was a tragedy. I was overwhelmed and felt totally unprepared, despite being a special educator. I also felt out of control, out of my league, and certainly out of my comfort zone. I had really hit a low point when Brian had open heart surgery at 3 months old. The surgery was the longest 4 hours of our lives and I remember subconsciously not wanting to hand Brian over to the surgical nurse prior to bringing him into the  OR. My husband had to gently encourage me to release our baby, which began the surreal 9 day journey in the hospital. The surgery  itself was a success, but those early years were just a whirlwind of  one medical or developmental challenge after another…

 It’s hard to believe today that Brian was once so vulnerable and helpless, this strong young man who now eats nonstop!  His remarkable recovery  from the heart surgery and eventual discharge from the hospital  was the first of many examples of Brian’s strength and resilience that he has and continues to demonstrate each day. 

When Brian was diagnosed with autism at 30 months old,  we were absolutely devastated by this additional diagnosis, but at least we finally had some answers to the questions that had plagued us for  several months regarding Brian’s unique development. It has been through both joyful times  and some of these  most difficult trials over the past 14 years that my heart and perspective have been gradually transformed for the better. 

Along the way, we have met wonderful families and professionals who share their experience, strength, and hope with us. These gifts have sustained us through hard times and have given us great opportunities to socialize and have fun through a plethora of activities. Brian lives a good life that has meaning for him and gives him joy! These are things I like to share with those who are curious to know who Brian is and  what our dynamic as a family is like. I appreciate the opportunity “to spread the word’ that our  son is a person first, with preferences, emotions, and abilities, just like everyone else!

While I may be teaching others a lesson or two about our son whenever the opportunity presents itself, Brian teaches me daily through his hugs, wants,  joy, fear, transition troubles, sensory issues, etc.  the most important life lesson: how to love and to be loved! My son is not the sum of his disabilities; he is a gift from God and my greatest teacher. Brian’s joy is contagious and his hugs are as huge as his heart. He lives and loves authentically, he is my hero and my heart…❤️❤️❤️ That’s what I want the world to know!! 

Until next time, thanks for reading! 😊 . 

 

Brian and I just returned from a fun weekend at the Great Wolf Lodge in the Poconos, PA. If you have never been, I highly recommend it- Water Nirvana everywhere! Brian couldn’t get enough and would still be there if I didn’t physically prompt him to leave! 🤣 We were waterlogged and weary by the end of Day 3 , but so happy for the opportunity to try something new. I was so proud of Brian for handling like a pro most of  the changes and transitions that an experience like this offers.  You just never know how a major change in routine and environment is actually going to go down until it’s showtime! These factors can be a major challenge  and very stressful for special needs families. I was on my own for the first time with Brian, as Jim was away in Japan on company business, so my anxiety level was quite elevated. Brian is a young man now, taller and stronger, and  not as easy to handle, especially during a meltdown. Predictably, the initial transition into the facility was difficult and overwhelming for a few minutes, but the  supportive Lodge staff, amenities, and  promises of a gizzillion gold fish crackers, iPad privileges, and swimming  eventually helped and WE WERE IN!!! Phew!

During the course of our stay, we met up with other special needs families, as well as families with typical children. It was such a great experience to meet folks from the tristate area who share certain commonalities, and just as interesting to meet others in which there were no similarities whatsoever. It was during one of Brian’s difficult transitional moments going from one part of the water park to the other that I was approached by a woman who I quickly surmised had a very different journey than mine. Our conversation went something like this:

She: ” I’ve been watching you in awe  for the past few minutes and don’t know how you do it”.

Me: ” Do what?”

She: “Manage your son like you do.”He is so adorable, but strong, that’s got to be tough!” Are you here alone?” ” I give you a lot of credit, I could never handle what you have to, you’re such a great Mom”.

Me: ” Thank you, I’m sure your right about that, excuse me, have a nice day”.

I have had similar conversations periodically in the past with other parents. Most special needs families that I know have had them too. I don’t fault people for their fascination with Brian and I understand why they ask a lot of questions. He is a very cute and curious creature! But this time, it was the “pity pat” on the shoulder and The Look, you know what I mean, it’s the ” I feel so sorry for you”- that  triggered very unexpectedly those feelings of loss and sadness  that  I thought I had resolved a long time ago….

Everyone has or will face major loss at some point in their life. Losses can vary in size and scope and are painful. Losses create sorrow, cause grief, and can test our very character. Brian’s arrival into the world was a simultaneous mix of elation and deep sadness. Delighted to blessed with such a beautiful boy, yet grieving the loss of the dream that we had hoped for. Feelings of guilt and shame for even saying such things. Oh, those early days especially were a cesspool of fear, doubt, and anger- why him? Why us? Overwhelmed by the medical needs of  our baby who needed open heart surgery and so much more… those losses were deep and profound. So many times I just didn’t want to feel the pain anymore, so I immersed myself in the world of being Brian’s Advocate and Medical Director. I didn’t have time to feel sorry for myself, there was just too much to do.

We eventually moved to our current town. Eighteen months later, my husband lost his job and was out of full time work for over 3 years.  I was diagnosed with colon cancer less than a year after Jim lost his job. Brian had severe sensory issues back then and was having difficulty settling in at school. Multiple school visits, conference calls, surgery, chemo, and job interviews. No time to process these losses, too much to do!! Keep on keeping on, hang in there, keep the faith,  and all those other platitudes that are well-intended and are meant to be helpful. 

Predictably, the “crash and burn” phase inevitably occured, because major losses in life can not ultimately be ignored. You can run away from them, play hide and seek with them, but eventually the grief from the losses will get you and of course it’s at the most unexpected and least desirable time. Funny how that works. My showdown with grief and loss occured long after Jim had finally landed a good job. Brian was in an appropriate school placement, and my cancer was history. It was a dark,  terrifying depressing time, like being in a deep hole with no lifeline. I thank God for counselors and medications! Eventually  the sun came out again, but the struggle never really goes away..

There are several lessons I have and continue to learn about losses and grief: 1. Both are an inescapable part of life 2. Don’t deny them, lest you pay a heavy price, 3. You are stronger than you realize, 4. You will be refined in the fiery furnace with a new armor of compassion for others, 5. You may lose an emotional battle, but you will ultimately win the war! 6.  Grief can easily be triggered when you are reminded of old losses, but these moments are also an opportunity to see how far along you have come despite them, 7. You never walk alone- God and His resources are there to help you, now and always…

On a final note, I have learned through experience and mistakes what NOT to say when I see others going through a major loss:

1. I understand what you are going through-( how is that even possible?)

2. Everything will work out just fine-(Well,  that’s not always true. Life is sometimes not fair).

3. Try not to worry- give me a call if you need anything- Of course, you worry, you’re human! And the person struggling will never call, by the way.

It’s understood when people say these things that they have the best of intentions and don’t know exactly what to say. Consider the following in lieu of platitudes:

How can I help? What did you need? Let’s make a date to get together. I can watch your kids on…. I’m going to call you next week,  send cards, etc,  anything and everything that involves self-care for healing for the person who is struggling with loss. Finally, just listening helps so much! You don’t have to have the perfect answer to the loss, just a willing ear to listen and a compassionate spirit to understand- but please, no pity!!

All of us will need support through losses in life,  regardless of who we are. Those of us with special children are more susceptible, but no one is immune from the grief that accompanies  losses. It is a question of when and how we respond to the grief that will determine how we effectively cope. Better sooner than later for sure! Self care will always be paramount for the long haul. When others support us in this quest, and visa versa, all of us are stronger and more able to weather the challenges that will be thrown our way. I know I can’t live my best life otherwise…

Thanks for reading, until we meet again…❤️😘😊

It has been a long time since I last blogged, and I have learned some very valuable life lessons during my 7 month hiatus.  Perhaps some of these will resonate with you?  

Seize the day with all of your mind, heart, and soul. 

Grab opportunities that will make your best life.

Hold the memories close and your family even closer.

Delight in your children, and treasure every moment you may have with them.

Life will change and will often not make any sense. 

Trials refine us, but don’t define us. 

God is always faithful, even when we are not. 

Our actions are our bond and faith is not just a five letter word. 

Life on this earth is just the dress rehearsal, not the live performance. 

A sense of humor is vital for sanity.

My son, Brian, is my heart and the best teacher I have ever had!!

Until we meet again… be blessed and laugh often!! 🤣🤣❤️😘

It’s hard to believe that Brian was officially diagnosed with autism over 10 years ago when he was just 2 years old. Our heads were spinning then and often still do now. Some things have changed during this time, yet so much has remained the same. The highs are still higher and the lows are still lower when it comes to the achievements, disappointments, rejections, and struggles that Brian continues to go through and always will.

 We thought that we initially were in the “Welcome To Holland” group, a poem written about what the experience is like having a child with Down syndrome. It is described as different place, but just as rewarding as any parenting experience could be.  But Brian’s developmental track indicated more than the average challenges associated with Down syndrome, a realization that occurred over time and too apparent to ignore. He was very different compared to his peers with Down syndrome. It was very painful to watch and most heartbreaking the night when I found several computer links after typing the key words ” Down syndrome” and “Autism”. I honestly didn’t expect to find anything,  yet the Mother Instinct that something was amiss was spot on. Of course this discovery eventually lead us to the DS/Autism clinic at the Kennedy Krieger Institute in Baltimore and to the wonderful Dr. George Capone. We were connected to other families in the same predicament over time. Brian received additional therapeutic and educational services as a result. Social media has greatly impacted the way special needs families can connect and support each other. There are lots of recreational activities for the special needs community, providing social opportunities for our kids and parents, thanks to many good-hearted folks. Each of these gifts have been a blessing and sustain me, especially in the challenging times. But make no mistake- our experience  with Brian’s dual diagnosis is not “Welcome To Holland” rather, as one Mom said, it can often be described as “Welcome To Beirut”, because of the many challenges that autism presents in conjunction with Down syndrome.

One of the main lessons that I have continued to learn in this  past decade is to have very flexible expectations, of Brian, of  those who interact with him on a daily basis, and of myself. However, it is often hard to do! Hard to wait, hard to accept things sometimes the way they are, hard to accept that some things will never change. I find that certain events, holidays, milestones, etc. will trigger emotions in me that I thought I had resolved long ago, bringing me back to the original feelings I had back then, still so fresh, raw, and painful.

Of course it’s a different story when Brian can learn skills. There are specific expectations for that, the bar needs to be raised and held high until he meets them. It takes a lot of patience, people, and persistence to make this happen, step by step, and  the bureaucracy/resistance and slow pace of the process can often be disheartening and exhausting. This is our son’s burden and ours to share with him on this long and winding road, so what to do? How do we make it for the long run?

I am still trying to figure out the necessary components of my “mental and physical endurance kit”. I recognize more recently as Brian is now an adolescent, how important  this kit is to have, but not just during this particular (very trying) season of life, but for the rest of his life and ours. He is getting bigger and we are getting older. I always pray to have the physical and mental strength to care for Brian and to trust God for his future. I struggle- a lot- with the “future” part, like the Doubting Thomas, even though there is clear evidence of God’s goodness in Brian’s life and the people, places, and things in it .  It’s hard to believe and trust, though, of the things yet unseen. I suppose there is a reason why it is called a ” faith walk”. I do know, that the way Brian lives his life, with his pure heart and trusting nature, ( for everything) is an example of true faith in action, one day, one moment, at a time. I can learn so much from my son…

So, finally getting back to my kit- here’s some important tools that I need for the long haul:

1)Sleep, 2)some form of daily exercise to clear my head, 3) Alone Time, 4) Other Special Needs Families 5) The ability to say, “no”, 6) Respite, 7) A Hobby that is fun and mindless-still deciding, 8) Vacations,  even a mini 6 hour one, 9) Lots of Humor,  10) Team Brian members who believe in him and his potential. 11) Compassion and Understanding, instead of Pity and Platitudes-Please!!!

I’ll be very happy just to get some decent sleep for starters, but each one of the aforementioned tools is vital for my long-term mental and physical strength for the journey with Brian. It’s a matter of putting on my own oxygen mask on first , before helping Brian with his (once a flight attendant, always a flight attendant 😊) First thing’s first. I think Brian would be in agreement.

What’s in your endurance kit for the long and winding road?

Until next time..thanks for reading!😊

Our beloved Brian turned 13 years old today! Brian, a teenager?! I’m still wrapping my brain around that one! Brian has a baby face, yet puberty has definitely kicked in full force and right on time ! He is still my little guy, yet he is growing up-too fast!  Birthdays are always a good time for reflection of the past, present, and future and I found today to be no exception. Brian’s life  has enriched ours from the moment he arrived on 8/25/03 at 11:25pm and its been an adventure ever since! Some of these adventures have been very scary, others heartbreaking, and still others very loving and rewarding. 

We continue to participate in Brian’s Life Adventures either directly or from the sidelines, watching Brian make his own way, in his own time.  It has and continues to take courage, patience, and faith in this journey with Brian. No one knows what the future will bring and when I think about it for too long, it can be a scary thing! Yet, the past 13 years have been remarkable for Brian and when I reflect on how far he has come, I am encouraged. I also believe that Brian was born, like all of us, with a  great purpose to fulfill in this life. He is part of the Master’s Plan, which is a great segue to a poem that I wrote 3 years ago for Brian’s 10th birthday. When I trust in God’s plans, somehow things work out for the best- I only have to look at Brian’s life to see that this is true.
The Master’s Plan

Dearest Brian,

How we love you! We have never been the same since that fateful night in August when we first called out your name.

You have made us better people through your courage, strength, and grace. You have won our hearts forever, no one can ever take your place!

While your challenges are many and often hard to understand, God said, “Please try not to worry, for Brian is in the palm of my loving hand”. “I know my plans for Brian will bring blessings and great joy to you, and those who know him, that Special Spirit and Beautiful Boy”.

So today, our blue-eyed wonder, we celebrate the precious gift of you! Thirteen years of an incredible journey! You have so much more to do! May your next year be filled with wonder, good health, and much love, with the blessings from our Master who always guides you from above. 

Until next time, thanks for reading! 🙂

The above photo is one of my absolute favorites!  I look at it almost daily, so I never forget how blessed I am. Life and motherhood hold a very special meaning for me as a result. This picture was taken on Mother’s Day, 2010, just 7 weeks after I finished my final chemo infusion for Stage 3 colon cancer. It was one of the happiest days of my life because I was here to celebrate my Brian, who is my reason for being a Mom. Twelve grueling chemo rounds were behind me and I felt great! I had pleaded, prayed, and bargained with God  the whole time to heal me because I needed to be around for Brian, and wanted to be with my husband, Jim. I was truly one of the lucky ones. Life is often not fair and there is no rhyme or reason why things happen, like cancer, or any other major life event. But I have learned through my personal trials both as a cancer survivor and Brian’s Mom that there is “beauty in the ashes”, that joy will inevitably  return, and that  there are blessings that come from the challenges that we  often find ourselves going through, though we may not always see them at the time of our trial.

Brian’s multiple disabilities certainly made our lives quite full ( and still do, of course), and at the time of my cancer diagnosis, Jim was also out of work ,so talk about the trials of Job! I look back now and think to myself how did we ever get through all of that?! Some days, not very well at all, truth be told. It was really tough to hold on to hope and we were often very discouraged and afraid. But  somehow, by the grace of God, we were able  to forge ahead. We had to   for Brian’s sake- there really was no choice. Kids have that way of really defining your priorities.  Despite the hell that was going on around him, Brian was unaware, and in this particular instance, I was actually grateful for his disabilities, as strange as that may sound. He was unable to understand what was happening, which was really blessing, as far as we were concerned. Brian’s priorities of Cheerios, chocolate pudding,  music, swim time, etc, remained, and these important things to him, were important to us too.

Many blessings did happen during that time. Our families and friends were stellar with their ongoing support, meals,  and prayers. I wrote a bi-monthly blog on a site called “support circle” to inform everyone of my trials and tribulations during cancer  treatment. This proved to be extremely cathartic for me; writing helped me to process my fear and sadness, while giving  me a “voice” in communicating with family and friends, when direct interaction was often not possible. We received many cards and phone calls that encouraged us to “keep on, keeping on”, which meant so much to us. Most importantly, Brian’s routine was maintained and he remained a happy boy (at least most of the time). 

Cancer does not discriminate, yet, I had truly thought at that time since we already had a son with special needs that we were somehow immune from this possibility. Our trump card was already on Brian-overload and will remain so for a lifetime. I figured if it were to happen, it wouldn’t be until I was much older, like most cancer patients. However, there are clearly exceptions, and it did take me awhile to wrap my brain around the whole cancer journey and its potential long-term implications for us as a family and especially for our Brian, our most vulnerable member.  A friend of mine is going through chemo treatments right now and she has a daughter with Down syndrome, a beautiful, bright young lady, who is 14 years old. Recently, I picked up the daughter to take her to day camp, and before we left, her Mom explained to her daughter that she was going for a chemo infusion that very day. The young girl immediately hugged her Mom and said that she was sad for her and asked the rhetorical “why, Mom?” Talk about a lump in the throat…I couldn’t agree more with the question. It is so unfair. And there is no answer to that question.

Yes, I have seen many blessings from cancer over the past 7 years.  I have become a stronger advocate, both for myself, and Brian, when it comes to both medical and educational matters. I was able to advocate for my Dad before he passed away from lung cancer a few years ago and I don’t think that would have ever been possible prior to my own experience. I believe I am also  a more  compassionate and understanding person. I do appreciate the life that God has given me and want to make the best of each day. And some of those best days can also  include napping, reading a book, or taking a long walk. Finally, I have learned the value of self-care, not only for myself, but for the well-being of my family. It’s never a good thing if the Mother Ship goes down!  I am forever grateful that I remain afloat and can bear witness to the amazing life that my blue-eyed Angel leads, which is the biggest blessing of all. 😊