My Regrets, My Pain, My Gain

Being a parent to a wonderful son has been one of the greatest joys in my life, but motherhood has also included personal regrets that I wish I could change. I’m guessing that’s true of most Moms and Dads. We think we know what parenting is going to be like based on the many examples we have seen over the years of other parents. We made a mental note of what or what not to do when we had kids of our own. We may believe that we had all bases covered prior to our child’s arrival into the world. But the fantasy versus the reality are often very different. Raising Brian is the hardest thing I have ever done. Sometimes, I wondered if I was really cut out for being a Mom. I had doubts in myself, in him, and how life was going to be. Fear and doubt were dominant forces, especially early on, but they are still there, just waiting to reappear in those difficult moments…

Reality tells me that my parenting has been successful, but for those of us who struggle with perfectionism, this truth can be hard to believe. Worrying about things that I couldn’t ( and still can’t) control in Brian’s life is probably one of my biggest regrets. I have gotten much better, but it took a very long time to relax and finally come to an acceptance that this is a trigger point for me, but, this anxious feeling WILL pass. I have years of evidence to prove this truth when I’m honest with myself about it. We humans like to control the outcomes of our lives on our own timeline, but of course life doesn’t work this way. Anxiety can be quite crippling and prevent us from enjoying the present moment- I had experienced enough of that and was desperate enough to choose something different, something better…Much to my pleasant surprise, life was not all a tragedy: there was enough good with Brian despite all the hardships of the special needs journey. Slowly, but surely, my perspective on motherhood and ultimately my life changed for the better- but it took work and time for the results to be apparent.

Another parenting regret I have has been comparing Brian to other children. I know we are not supposed to do that, for each of our kids has unique challenges and strengths. While this is certainly true, most parents will still take note of similarities and differences anyway. This was especially true in the early years when Brian was in early intervention. Comparison provided a frame of reference for me when so much was unknown about the extent of his disabilities, so in this way, it was actually helpful. However, as more issues came to light, comparing became extremely painful. I didn’t want to compare Brian’s progress ( or lack of it) to anyone else, but honestly it was hard to avoid when it was pointed out to you by well meaning professionals or in the sympathetic comments or glances from other parents. I felt very sad for a long time during these moments, trying to be positive, but the sting of disappointment and grief would get in the way.

As a result of my personal pain in those early years, especially immediately following the autism diagnosis, I went down a rabbit hole for a long while and isolated there. I didn’t have to feel in the rabbit hole, just survive, and that’s exactly what I did. I went through the motions and made sure to be physically present for all that Brian needed, including his doctor and therapy appointments, but emotionally/mentally, I was very far away. Keep in mind social media was just evolving around this time, but I was not a participant yet. There was a parent support group that I attended, but I felt like an outsider looking in and felt I didn’t have too much in common with the other participants. I wish I hadn’t isolated for so long, as I missed out on opportunities to engage with others and learn from their experiences and strength.

My independent spirit and stubbornness resulted in not asking for help for a very long time when I should have. I still struggle with this today, but I am now much more willing to vocalize my need for support. I believe the main reason for trying to do everything on my own was to avoid any discussion about the pain and sadness I was feeling on many days when I felt overwhelmed by Brian’s care. I realize now that there are blessings I could have had as a result of taking a risk in being vulnerable, but for a long time I just wasn’t ready..

I also regret not making more time for self care. I believed at one time that taking any time away from Brian would be detrimental to his well being. I didn’t want him to miss a moment of anything that would better his development. This unbalanced attitude eventually made me very depressed and of course nothing could have been further from the truth. The reality is when we take care of ourselves, we are better, happier parents. It can take a lot effort, planning, and creativity in order to make self care happen in a life where our kids need so much from us. It is often easier to dismiss our own needs or make excuses for them. But the consequences can be quite dire both for ourselves and our kids if we don’t make a deliberate effort to to do good things for ourselves. I now look at self care as an investment in myself that pays back dividends with compound interest. It’s the best thing I have done for myself since becoming a parent and it’s never to late to start!

Relaxation is an important part of self care that I also neglected for a long time. We are often so caught up in constantly advocating for our kids, planning their meals and their lives, that it’s really hard to decompress and detach from all of the special needs madness. The reality is: special needs parenting is a huge undertaking that is lifelong, so we better find ways of relaxing, lest we collapse! This may mean napping, reading for pleasure, or meeting with a friend and discussing something else besides disabilities. It takes time and practice to establish new and healthy habits but the effort is both worth it and necessary.

For every regret I have had, there are also truths that have evolved, slowly, over time..I am a worrier by nature, but looking at the track record of Brian’s victories in the most trying of circumstances reminds me of the good that can come out of adversity. I am stronger than I think I am. I will rise up again when I fall down. I can, even when I think I can’t. It’s not good to compare myself or Brian to other parents or children, but I can certainly learn a lot from both. I know when I need to be alone, but I also realize the importance of being in relationship with others and the blessings that brings. Today I am learning to ask for help when I need it and am getting much better at doing so. I now recognize allowing others to help gives them the opportunity to express their gifts and love. Finally, I promised myself that I will take better care of my own needs, relax more, and laugh lots, seeking such opportunities whenever possible. Life is too darn short to live with further regrets. I think Brian would agree! 😊

Until next time, thanks for reading! 😊

What A Difference A School Makes!

Brian’s school had their first “Back To School Night” yesterday in 3 years! It was surreal to be back in the building last night post- Covid and also a relief to know that we are back to normal, interacting (in person!) once again with staff members and other parents. In a certain way, it was like the pandemic never happened once we were all together again. The normalcy that we craved had finally arrived and it felt so good, along with the hugs and handshakes that had been put on hold for so long…

Last night was a cause for a celebration of many things both great and small. Many School improvements, along with staff promotions, were highlighted and the opportunity to learn about upcoming opportunities for the students was very exciting. I was able to speak with Brian’s teacher and staff for an extended period of time and learned that he is doing more things at school than I realized. He is maturing and more willing to learn and try new things than before. I am so happy that Brian is currently thriving in his school program! Knowing that your child is making progress, albeit slowly, and most importantly is happy, is like winning first prize! Brian’s school experiences have not always been so positive, in fact, some of them were excruciatingly painful! We had a horrific experience in a previous program that ultimately led us to Brian’s current school, New Beginnings, over 7 years ago.

I will never forget that freezing morning in February 2015. I had just gotten out of the shower when my cell phone rang with an incoming call from Trenton, NJ . I immediately thought of state government, then just a coincidence of a wrong number. Since I didn’t recognize the number, I almost didn’t answer, but decided to do so at the last second. Little did I know what I was about to hear on the other end. A gentleman introduced himself and said that he was with the NJ state department of institutional abuse. He mentioned Brian’s name, his school that he attended at that time, and the reason for his call. Apparently a staff member from Brian’s school had called the state to say that Brian and another non-verbal student in his class were allegedly verbally and physically abused at school, but he was OK. I don’t remember very much after hearing those words. I do remember running out the door with wet, uncombed hair and driving to Brian’s school like a maniac, calling my husband, Jim, enroute to meet me there. I had a pounding headache and felt like my heart was going to explode through my chest. I kept thinking to myself how could this happen to my boy?!

Brian was waiting in the front office with a staff member, along with the state investigator. I grabbed my son and wouldn’t let him go-he appeared to be OK. I checked Brian from head to toe: there was no evidence of physical abuse and he seemed like himself. Where was his teacher and the principal? In the meantime, the state investigator privately interviewed Jim and I, along with each one of the staff members in the classroom, and even Brian, who repeatedly told the investigator on his communication device that he wanted juice and a cereal bar, along with Christmas music.

The state investigator’s conclusions revealed that the alleged abuse did not happen, but something DID happen and we were not getting any straight answers… The principal eventually appeared and said that Brian’s teacher was being placed on administrative duty and a staff member involved was being terminated. Still no specific details for Jim and I. Of course this was a done deal once I received that initial phone call from the state investigator- Brian was not going back to that school. The next day we learned what actually happened: a staff member in Brian’s class had called the state to report the classroom teacher because she didn’t like her and they had had a history of disputes/disagreements. She wanted to get the teacher fired- what she didn’t think through was how her actions would effect 2 innocent children who could never defend themselves. We were sickened by the whole mess, and especially disappointed by the reaction of the school administration who did not advocate for Brian or even attempt to redeem the situation. I called Brian’s case manager on the way home: we were done and Brian needed a new program effective immediately.

After looking at 4 private autism programs in just a few weeks, we determined that Brian’s current program, New Beginnings, was the best fit for him. However, I was scared: after what Brian went through at the other school ( I was not impressed with his last teacher anyway, even before the debacle with the state happened), I wasn’t sure if this new school was actually going to work. Brian was starting a new program in the middle of a school year, after being at the previous school for 6 years. Transitions are definitely not Brian’s strong suit, and as predicted, the initial transfer to New Beginnings was extremely difficult. There was lots of resistance, sitting or lying down on the floor at school. Protests of every kind and bathroom accidents. Plus there was a bussing issue that we were blindsided by at the initial IEP meeting by the new transportation company who did not want Brian on their bus because he was too behavioral. It made perfect sense to me: my son’s educational world had literally just been turned upside down. Everything was unfamiliar and scary to him. I felt heartbroken for Brian and doubted my decision for his placement. Deep down I knew that ultimately everything would be OK, it was just going to take time and a very willing and patient staff to understand and support Brian. Like a Doubting Thomas, I needed evidence to see that I made the right decision.

Slowly, but ever surely, Brian started to adjust to his program at New Beginnings. From the very beginning, communication from the school staff was immediate, frequent, and transparent- how refreshing! This was definitely something I was not used to, in fact, I initially doubted it’s validity and needed time as well to trust in school staff once again. In time, this is exactly what happened. Brian’s confidence and comfort level grew and mine did too. There was always a willingness on the part of the school staff to listen to my concerns and to implement suggestions in order to help Brian learn. I can’t say enough how important that is: a school program is only as successful as the willingness of both parents and school staff to work together. Both parties have to also be flexible, creative, and perhaps above all, maintain a sense of humor, for educating special needs students is definitely not for the faint hearted! Conversely, raising a disabled child is very difficult and requires the same understanding, support, and love that our kids require. Our special children will thrive when the village comes together on their behalf!

It was so heartwarming last night to hear about Brian’s successes from his teacher, assistants, therapists, and other staff members. He has come a long way from those early days at New Beginnings of dropping to the floor and refusing to get up. Brian is more willing to learn and continues to make progress in his own time. He is affectionately known as “The Mayor” around New Beginnings, as he loves to greet each staff member and student alike. Like all of our children, Brian has gifts to share at school that leave a lasting impression on those who know and work with him. One staff member shared that he loves being in education specifically because of Brian…❤️❤️ I felt so overwhelmed by how others lives have been impacted for the good by our beloved “Joy Ambassador”, the title that I officially bestowed upon Brian a few years ago. It reminds me that we may not always remember what someone says to us, but we will always remember how they made us feel- how very true this is of our children and those who work with them..❤️❤️❤️❤️

On my way out of the school building last night, Brian’s teacher drew my attention to a picture of Brian that is on the wall in the main office area. He is in the school Bistro about to purchase a snack with his debit card, using his iPad mini to communicate to one of the staff what he wants. It took lots of steps, practice, and a collective effort for this captured moment in time. I am very proud of this achievement that my son worked so hard for. To some, this may be a small or insignificant thing, but to Brian, and to those who know and love him, it is a major milestone and a testimony to what love, patience, and persistent teaching can do. Thank you, New Beginnings, for being Brian’s second home of learning and love. We are so glad that you are at the helm of Team Brian and look forward to even more progress this year! 😊❤️👍🏻 I know Brian would say “thank you “ if he could, but I believe his actions speak louder than any words he could say…❤️❤️❤️❤️

Until next time, thanks for reading! 😊

Hey, 19!!

Brian will complete 19 times around the sun in a few days and I’m still trying to wrap my head around it…Where have the years gone? As much as time seems to stand still, (especially in those challenging moments of raising a disabled son) it has truly flown by! There have been lots of wonderful moments, memories, and joy over the past 19 years, as well as heartbreaks, heartaches, and disappointments. As a result, I have mixed emotions regarding Brian’s birthday: it’s a wonderful milestone, especially of how far he has come along, but his birthday is also an annual reminder of just how much has remained exactly the same and always will, despite the progress. It’s bittersweet for sure…

To Brian, his birthday is just another day: gifts are irrelevant, but cake and ice cream are new favorites this year. He loves his life and his activities /routines which are the best gifts as far as Brian is concerned, on his birthday or during an ordinary day. That is what is most important and for which I am extremely grateful…But I still have birthday wishes for my Joy Ambassador. It is important to have dreams for our children no matter who they are or how old they are. At the end of the day, parents just want their children to experience life to the full and for them to know how much they are loved. Isn’t that true for all of us? My husband and I try our best to expose Brian to different experiences and demonstrate our love. Brian is generally a happy and a very loving young man, so it appears we have been successful in our endeavors, at least most of the time. Here are the birthday wishes for my Beautiful Boy:

Dearest Brian,

Here are my birthday wishes for you:

1. Son, may you always know how much you are loved- which is to the moon and back!! 😘😘😘😘😘😘❤️❤️❤️❤️❤️❤️

2. May you be blessed with good health- Brian, you have had your share of medical challenges over the years and have faced each one with great resilience and courage! Dad and I pray that you always remain strong, no matter what comes your way…💪🏻 💪🏻

3. May you be open to new experiences- I know this is not easy and takes time, but you benefit in so ways from new opportunities…

4. May your lonely moments be very few- No one likes to be alone and I know that you especially love to be in the company of others!

5. May you remain joyful! Brian Michael, you have been blessed with a sweet nature and a happy heart, which is your hallmark and gift to the world . This has been true since your arrival, despite the challenges of Down syndrome and autism. Sometimes your disabilities threaten to take away these beautiful qualities. It is not easy and you have a lot on your daily plate, but ultimately you prevail!

6. May you continue to bless those who are put in your path- Everyone who knows you speaks of your beautiful smile, big hugs, and loving personality. You appreciate many things that most of us take for granted. Dad and I look at life through a more appreciative lens because of you..

7. May you continue to learn and progress to the best of your ability- We wish progress, not perfection, in all that you do. It doesn’t matter what it is, or how long it takes, as long as “it” makes you happy and enhances your quality of life. We will do everything to support you. You are amazing! ❤️😊👍🏻

8. May you always have a “voice” to communicate what you need, how you feel, and what is important. This is tricky, and while augmentative communication is helpful, we don’t always know exactly what is on your mind. It is our wish that with time and practice, we can empower you more with the necessary words, for your “voice” matters!

9. May you always know how much Dad and I love you, no matter where life takes you or what happens..Brian, you have forever changed us for the good and are etched deeply in our hearts, our bond is complete and unbreakable! ❤️❤️❤️

10. Dearest Brian, may you continue to be in the palm of God’s hand, exactly where you need to be! He created you and sent you to us from Heaven. It’s hard to believe, but God loves you more than we do and knows His plans for your life. I know you trust Him for all of those details by your pure heart and trusting nature, even when Dad and I waver in our faith. Sometimes, we do find it difficult to believe in the midst of your trials, but your courage and perseverance tells us to do otherwise. We will continue to ask for God’s wisdom/ guidance, follow your lead, and take huge leaps of faith with you into the future, while living and loving with you in the present. I believe this is the best birthday gift we could give you.❤️❤️❤️❤️

All of our love, hugs, kisses, and hopes…

The Joy Ambassador ❤️❤️❤️

Mom and Dad 😘😘😘😘❤️❤️❤️❤️

What Is Your Purpose?

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

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

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

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

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

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

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

Until next time, thanks for reading! 😊

.

What Is Your Purpose?

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

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

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

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

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

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

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

Until next time, thanks for reading! 😊

.

Cancer and Hope: Perfect Together

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brian’s Hero (Mine Too!)

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

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

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

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

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

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

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

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

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

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

Until next time, thanks for reading! 😊

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

Rest and Retreat

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

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

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

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

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

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

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

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

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

Until next time, thanks for reading. 😊

Musings On Motherhood

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

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

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

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

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

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

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

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

You Don’t Know Until You Try

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

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

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

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

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

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

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

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

Until next time, thanks for reading!