Today is the eve of Brian’s 21st birthday- I really can’t believe it- how is this even remotely possible? Where have the past 2 decades plus gone? Our baby-faced young man will always be our boy, no matter how old he is or what he does. I have been especially nostalgic today, thinking of when Brian was first born and the many struggles that awaited him. Those early days were so hard, especially with the plethora of medical challenges that required so much of our son and ourselves. I remember thinking how were we going to get through all of these obstacles… Some of these struggles ended up being temporary , and others were meant for a lifetime…The reality was that during many days we were not successful at all, in fact, we were broken in heart and spirit. Those days were especially long…We clung to one another and our faith in great desperation. Conversely, other days were sublime and victorious, a “shout from the mountain top” kind of experience that we still savor even today. No matter what type of day it was , Brian ultimately remained steadfast and did not waver in forging ahead, regardless of what was happening to him- and he is still like this today. Our son is a fighter, who trusts and believes – he knows no other way- even if his challenges are insurmountable.

We have marveled over the years how Brian keeps going, despite what he faces daily, never complaining or bitter about his lot in life. I am so very proud of Brian and what he has taught me about his life has helped me to live my own in a better, more authentic way. I am very grateful to Brian for that, for he continues to show me what is truly important in this passing life and what matters most: love, kindness, appreciation for simple things, honesty, loyalty and sacrifice.

Although Brian can’t speak, (albeit some words) I know he understands a LOT! I look forward to Heaven when he will speak and we will have many conversations together…In the meantime, here on earth, Jim and I continue to learn how to communicate with Brian and he with us- it has much improved and will always be ongoing. We have all come so far in this regard in 21 years!

One of my favorite modes of communication is writing and without further delay, it is time for a birthday letter to our Joy Ambassador in honor of his 21 years of life:

Dearest Brian,

It is with great emotion and love that I write this letter to you on the eve of your 21st birthday. I have been teary-eyed most of today thinking of the many memories we have shared together since your arrival on August 25, 2003 at 11:30 pm. I will never forget that night for the rest of my life and I’m sure you won’t either! You came into the world as a fighter and I have no doubt that when God calls you home one day, you will still have that same fighting spirit…

What a life you have lead! You have shown Mom and Dad over the past 2 decades plus that life is worth living and can still be joyful, despite its many sorrows and challenges. You are Strength Personified and humble us daily with the challenges that you manage . We marvel at your determination to run the race that has been given to you and will always cheer you from the sidelines.

Thank you, Son, for being the best thing that has happened to Dad and I. Some of our greatest joys and happiest moments have been because of you. You have added humor, love and great purpose to our lives. Yes, we do get frustrated with the challenges of your disabilities sometimes and the exhaustion is real. These things are a part of the life that we lead and together we do the best we can. We are not a perfect family, but together we are perfect for one another.

As you complete your 21st year tomorrow and begin your 22nd year, we pray that you will continue to persevere and run the good race that you have been given. May you remain joyful, curious and willing to learn new things. Always know that Dad and I are so very proud of you and believe that anything is possible for you…Beloved Brian, you represent all that is beautiful and good; we love you so very much! Happy, Happy 21st Birthday! You have won our hearts forever! God will continue to bless you, Son, I know He will…

Love you to eternity and beyond,

Mom and Dad 😘😘😘❤️❤️❤️🎉🎉🎉🎉

My Mom and Dad were married for almost 61 years, a definite rarity today! Their relationship was truly special and so inspiring to me. I greatly admire what they had created for our family and the life they had built together, especially as I became older and wiser… Their deep love, affection and respect for one another endured the ups and downs of life over a span of 6 decades. It definitely was not easy. My folks emigrated from Ireland to New Jersey in the early 1950s, leaving their families and friends behind, in search of better opportunities for themselves and their future children. With hard work, faith, and a strong belief in each other, their goals were ultimately realized. Both in good and bad times, Mom and Dad were unified in purpose, loved one another, and remained strong, no matter what life threw at them. Our family didn’t have a lot of money, but I never felt I lacked anything. Mom and Dad provided stability in our home and I knew I was loved, no matter what. My siblings and I were so blessed to be raised by parents who were strong in their commitment to God, to one another and their children.

Of course Mom and Dad were not perfect and like any other couple, had their relationship challenges, but those particular details were never revealed in front of us when we were kids. Whatever my parents argued about or disagreed upon was done privately. They were generally able to resolve in their own way whatever the particular issues were and we children were none the wiser. I am grateful that Mom and Dad did not argue in front of us when we were kids- I’m sure that would have affected us profoundly as children. However, years later I would make the connection that the reason why I didn’t know how to conduct myself in a fight or disagreement, was because it wasn’t modeled for me growing up. Conflict resolution was definitely not my strong suit and it took lots of trial and error to get it right, or at least be on the right path. You can imagine how much more complicated this process can be when you are raising a disabled child…

Unlike my parents, Jim and I met much later in life and within 13 months of meeting one another, we got married, moved into our new home and had Brian. The next few years of our marriage brought open heart surgery for Brian, a job change and an autism diagnosis, followed by another move. So many milestones were happening, with not a lot of time to process all of these things…There were too many details to attend to, fires to put out and doctors appointments to keep. When I look back now, I realize that it was truly the grace of God that was sustaining me during those trials and tribulations in our family life. It is that same exact grace that makes our marital commitment and love for one another still possible today. Without such favor, I don’t think we would still be married , as there are too many challenges that constantly threaten to defeat us. It would be very easy to give up and there were definitely days over the years when we have both felt that way.

As you can imagine, the divorce rate for special needs parents is much higher than the average couple, which makes total sense. While all children change the dynamic of a marriage, the ongoing needs of disabled children have the potential to obliterate the marriage altogether. Each day and every decision revolves around our kids because they depend on us and always will. It is the ultimate sacrifice that most parents will absolutely ( and most lovingly) do for a lifetime and wouldn’t have it any other way. But it does come at a great price and the marriage is forever changed.

Sometimes, the stressors of raising a disabled child become so overwhelming that the marriage ultimately dissolves. Other times, there are extenuating circumstances that call for at least a separation that may eventually lead to a divorce. Life throws everyone curve balls of its own and the stress of it all makes you want to throw in the towel. I have certainly felt this way numerous times. The reality is: we are ordinary people placed in extraordinary circumstances. Marriages are deeply affected by a disabled child. The hopes and dreams we had for our kids must be rewritten and our expectations of ourselves and spouses must be flexible in order for our marriages and families to survive and thrive. It’s a process that requires faith, courage and constant negotiation with our spouses.

While my parents appeared to have found their own brand of conflict resolution during their trying times that worked for them, my husband and I had no clue. In the early years of our marriage, especially when we came out of “crisis mode” with Brian, we had to deal with our own marital challenges and communicate through them. Boy, was this difficult! Many times I thought Jim was from Mars ( and I told him so) when I thought I was communicating clearly and being reasonable during an argument. Apparently he thought I was from Venus, so I guess both of us were speaking a foreign language to one another. We had to ( and still have to): learn to really listen to one another, speak in words that the other person will understand, know when to let things go ( as well as stick with our convictions), as well as when to compromise, and to ask the proverbial question: how important is it-really? Learning to “agree to disagree” and, to say “I’m sorry” and actually mean it ( we are both still in this Master Class) have probably been the two most valuable lessons of all for me in conflict resolution. We continue to be a work in progress and I’m sure we will always be for the rest of our married lives.

Fortunately, Jim and I were both raised by loving parents who demonstrated love and commitment to their families no matter what happened, just like our grandparents had shown to them. We had witnessed examples of our parents loving and honoring one another while growing up, despite their individual differences and especially when life was unfair. . Faith and being part of a church community was also at the center of our lives both in good and bad times. We learned from our parents that our dependence on God for all things in this life shows strength and provides a peace that defies human understanding. I feel very grateful that Jim and I come from very similar backgrounds, for it is these foundational principles, etched in our minds and hearts from early childhood, that are the reasons why we can make our own marriage work.

Once upon a time, I used to think that I had to depend on others for my own happiness and if my expectations weren’t met, I must be doing something wrong. I was guilty of this thinking early in our marriage and eventually was forced to consider an alternative perspective. Learning that I am ultimately responsible for creating my own happiness, despite what others are doing or not doing, has been one of my greatest life lessons. This realization finally came after many years of mistakes and distorted thinking. I finally concluded that happiness is truly a choice: marriage and children can’t “fix” me, nor can other people, places or things. Nor can I “fix” other people, including my husband and disabled son ( as much as I thought I could and still want to on occasion, lol).

Despite our imperfections, trials and tribulations, our marriage remains intact almost 22 years later, in many ways stronger than before. My husband and I are united in the things that really matter and love each other and our son wholeheartedly, wanting the best for one another and for him. Naturally, we still argue and get frustrated with one another sometimes but have learned not to sweat the small stuff quite as much as we used to and to laugh a lot more. Jim is my best friend and a great Dad. We may not have it all together, but together, we truly have it all, and for that, I am grateful.

Until next time, thanks for reading! 😊