My Love Letter To Brian

Our children are gifts from God, specifically meant to be ours, and we are privileged to be their parents. Being a Mom, for me, has been a joy unlike no other. Conversely, I have also never experienced such intense pain and sorrow during this journey. While parenthood can certainly be extreme on either end of the emotional spectrum, there is also the mundane and predictable “in between.”It’s during an “average day” that I can take for granted or forget why I love Brian so much. We go through the daily routines, meet the necessary obligations, handle both the expected and unexpected challenges, then do it all over again the next day… so much time and effort are required, often leaving little energy and sometimes a bad attitude especially if we are overwhelmed, frustrated, and tired. At least that’s how I feel sometimes anyway.

I realize that I have to be very intentional with my positive thoughts and actions during those times, especially when I don’t feel like it . Being negative comes more naturally, yet you realize it’s better in the long run to live your life in a positive way. It’s like exercising a muscle that you know will be stronger if you use it, but actually doing the work to achieve this end takes a strong mindset, determination, and belief that the effort is worth it. History has shown me over and over again that this is certainly true. But sometimes a strong self-will is just not enough- I need a role model! I have always found such inspiration in my beloved Brian. He is the one who ultimately gets me back on track, shows me the way, and sets me straight by the genuine life that he leads daily with strength and grace. How I wish Brian could fully understand exactly what he means to me and how he has impacted my life for the better in a million different ways… If Brian were able to read, this is the letter I would write to him:

My Dearest Brian,

You are the BEST son a Mom could ever hope for! I love you so very much! I never thought that I would ever become a parent, then God gave me the best gift in you. I think you were pretty excited to join our family too, as you arrived a month ahead of schedule. What a surprise, so wonderful and very scary at the same time!

Dad and I were both very sad when we learned that you were born with Down syndrome, but that didn’t change how much we adored you from the moment we laid eyes on your beautiful face! You were feisty, hungry, and sleepy, just like any other infant. You loved to be held, enjoyed your baths, and were always so happy to be retrieved from your crib, regardless of the hour. We were so frightened when you had your open heart surgery at 3 months old, but you persevered and showed us how truly resilient and strong you really were, the first of many times in your young life that you would do so…

You endured lots of therapies, doctors, and a second diagnosis of autism. Our hearts were broken and fearful of what life would have in store for you as a result of your dual diagnosis . Those early years especially were very difficult, but once again, you have shown over time that you can overcome obstacles victoriously! You have been a role model for what CAN be, despite the very heavy burden that you will always carry. I wish your load was much lighter, Son, but you never complain. Your heart is pure and your spirit is joyful. You live and love literally in the moment whoever and wherever you are. You are at peace with yourself- a gift that many would pay dearly for if they could.

While we don’t know what the future holds for you, Dad and I know who holds your future- the same Heavenly Father who sent you to us over 15 years ago, to teach us, and mentor us, in being the best parents for you and what you need. While there is always room for improvement, Dad and I continue to try our best.

Thank you for understanding and loving us when we have been impatient and frustrated at times because of the challenges associated with your disabilities. Thank you for being patient with us when we make mistakes. Thank you for loving us for who we are and for teaching us what is important in this life: kindness, sacrifice, humor, and love. You are the personification of all these things, a true hero and role model. Thank you for making us better, less selfish people.

My beloved Brian, you will always be the song of my heart and my joy. I continue to pray for your health, protection, and happiness, and always will. God has given you a great purpose to fulfill in this life as His Ambassador Of Great Joy- so far, you have done a fabulous job! I look forward to seeing what else is in store for you, for whatever it is, you will do it so well and with all of your precious heart and spirit.

I love you,

Mom ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜โค๏ธโค๏ธโค๏ธ

Thanks for reading! Until we meet again next time๐Ÿ˜Š

Everyone Needs A โ€œBucket Listโ€

Disney Magic is truly a one of a kind thing that is best experienced with loved ones, especially children, who can offer a fresh perspective on what it means to be young at heart all over again. A few weeks ago, Jim, Brian, and I experienced 5 days of that special magic in the Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom at Disney World . It was an adventure of mass proportions that had been months in the making. The preparation was similar to that of planning a Thanksgiving or Christmas feast: lots of details, organization, and time, were necessary prior to the actual event itself. Finally, The Big Day arrived when we traveled by plane (a first for Brian) to the Happiest Place On Earth!

There was an underlying concern for all of the potential things that could have gone wrong during our travel and stay in Florida. Brian likes his routines: new things are initially very off-putting to him and transitions can be quite challenging. I was most concerned about Brian’s first time traveling on an airplane, especially his ears on the descent. We never know exactly how our non-verbal children are feeling and Brian has a history of sinus and ear infections. As a former flight attendant, I saw many passengers suffer with incredible ear pain 10 minutes prior to landing and there was nothing that could be done. So, I packed Brian’s s chewy tubes, juice boxes, nose spray, and his beloved goldfish crackers exactly for this this purpose and hoped for the best. Fortunately, there were no ear issues on any of the flights! Brian absolutely loved the inflight experience, as a matter of fact, he was so mesmerized, that he had his little face practically plastered to the window for most of the flights, especially during takeoff and landing. Brian also did well overall with each of the new experiences during our time at Disney World. He was initially confused as we entered each new theme park, but not upset- this in itself was unprecedented! Brian quickly came to love the rides, shows, and especially the Disney characters- we did too! The complete 4D Sensory Experience that is trademark Disney was truly sensational no matter where we went. The visual and auditory experiences were incredible and the customer service was superb all around, two huge thumbs up!๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป One day, we hope to return and relive that special magic all over again- a very important “bucket list item” that we can now cross off our list.

Speaking of “bucket lists”, I have been reflecting on my own personal ” bucket list” ever since our adventure in Disney, with a renewed commitment to realize the additional items on that list. Life is truly too short. News headlines are often a stark reminder of how things can change in a heartbeat. The recent tragedy in upstate New York where the 20 people were killed instantly in the limo accident is just one reminder that tomorrow is not promised for anyone.

Before we became parents, we had more time, opportunity, and perhaps less responsibility to pursue those things that tapped into our talents and interests. Now, it is almost impossible to do because of numerous responsibilities, limitations of time, energy, finances, etc. Yet, we as special needs parents must somehow find a way to make this happen for our own personal fulfillment- life can also be very hard and long some days.. Periods of respite are an essential starting point; after all, parents need a physical and mental break. I am so grateful for those opportunities when Brian is in school or involved in extracurricular activities. It is good for him and good for me too. Yet, this is only the beginning and that is where a “bucket list” of things that fulfill the emotional/creative sides of ourselves is just as important as physical fulfillment.

My personal “bucket list” includes:

Exploring Italy, Spain, and Portugal

Visiting Alaska, Montana, Idaho, and the Pacific Northwest

Writing a book (either special needs or cancer survivor related)

Singing karaoke

Learning another language

Playing a new instrument- I play a basic guitar and an even more basic piano, but would like to learn more..

Participating in an acting/performing group ( currently doing that via a class at the Papermill Playhouse)

Reading a book each month that is NOT special needs related

Going back to Disney! ๐Ÿ˜Š๐Ÿ‘๐Ÿป

This list is evolving and is certainly not limited to the aforementioned. As you can see, the items on my list range from the very simple to the quite complex. Who knows what the future holds and when I will be able to actually accomplish all of these things, but I am determined to try! All work and no play makes Brenda very dull and sad, so it’s part of my personal mental health contract to make sure I pursue opportunities that will feed my mind, heart and soul. I will be a happier person and a better wife and Mom when I listen to my heart’s desires.

So, what does your “bucket list” look like? Perhaps some of the items include things like: going back to school, traveling to a new place, skydiving, owning your own business, or hiking the Appalachian Trail. It might be as simple as just going out to dinner and movie once a month or taking an art class. The items on your list don’t matter -your commitment to realizing your goals is what counts most. Carpe Diem!

Until we meet again, thanks for reading. ๐Ÿ˜Š