A Birthday Love Letter

Brian will celebrate his 17th birthday this week and I have been thinking a lot about what the past 17 years have meant to me as his Mom. Like most parents, I have had a multitude of experiences during this time with my special son that have been exhilarating, frightening, frustrating, and loving, sometimes all at once! I can’t imagine not being Brian’s Mom, while sometimes wishing on certain overwhelming days that God didn’t expect so much… It’s a privilege to be a parent and to have that ability to influence and raise little human beings entrusted to your care. It’s also a huge responsibility and sometimes a burden , where it’s no longer “all about me”, rather, “it’s all about thee”. Yet, I think it’s safe to say that most of us couldn’t imagine our lives without our children, for better or for worse. They are forever a part of us and add a richness to our lives, reminding us daily of what is important, loving, and genuine.

The challenges of both Down syndrome and autism prevent Brian from speaking, reading, or writing. It was a tough blow in the beginning to accept these truths and the life-long implications for Brian as a result are clear. I still become whimsical from time to time, wishing that Brian and I could have a conversation. I dream about those talks sometimes, or how Brian could read his favorite stories, and write down his thoughts on any given topic. I know that I am projecting a part of myself, thinking that Brian would want to do these same things had he been a typical kid. Of course, that may or may not have been true anyway, but still, that longing is always there. This is especially true during challenging times when I see Brian so frustrated and unable to speak what’s on his mind. If only I knew what it was, I could make things better. Speech apps on the IPad can only communicate so many words. Yet, despite himself, Brian has actually learned to become pretty proficient with his “talker” and has become a better listener/“communicator” over the past few years. His receptive language has increased and just when I think he either doesn’t understand or is not paying attention, Brian proves me wrong almost every time!

For every challenge in Brian’s life, there have also been as many victories. I am proud of my son’s resilience and how he handles everything that is thrown at him with incredible grace and strength. He soldiers on, never holding a grudge, or expecting anything, with the exception of being fed, loved, and cared for. Brian’s joy is the real deal, as much as his displeasure and fear are, especially when it comes to sensory things or transitions. Reflecting on all of these things, I want to express to my beloved Brian on the completion of almost 17 eventful years what his birthday, his life, means to me. Somehow, I believe he already knows the things I’m about to say..

Dearest Brian,

It is incomprehensible that you will be turning 17 years old in a few days. How and when did this happen?! My brain is having difficulty imagining this major milestone in your life. So much has changed over the years for you , yet simultaneously a lot of things have remained exactly the same and always will. Regardless of what has transpired in your past, present, or future, you remain steadfast, strong, and a loving human being that I am so very proud to call my son. I often marvel at your overall good nature in the midst of your trials. I have learned so much from you, carefully watching your actions and reactions, to people, places, and things. I sometimes don’t know how you continue to persevere with your disabilities , but inevitably you do, with grace and a determination that is beyond admirable.

I love everything about you from your beautiful blue eyes to your pronated ankles and have taken a special delight in what truly makes you happy. You are a simple young man who loves simple life pleasures: food, music, people, movies, your Ipad and of course copious amounts of water. You continue to teach me that a life can be well-lived whether we are on a great adventure or doing nothing at all. I am so proud of your willingness to try new things now; years ago that would have never happened! New adventures are still scary, but you work through your fears and usually end up accepting the situation and often have fun. I wish many more life adventures for you, my Brian, and it is Dad’s and my mission to expose you to as many as we can.

Thank you, Son, for teaching me to be stronger than I ever thought I could be. Your open heart surgery at 3 months, orchiopexy at 18 months, ear tubes at 3 years old, eye surgery at 11 years old, and back brace for scoliosis for over 2 years were so hard to witness. Then my colon cancer diagnosis came along, as well as Dad’s job loss, and his prostrate cancer diagnosis. Some days my heart felt so broken for you that I thought it would break altogether.. I couldn’t believe how you managed to get through your medical challenges so strong, so accepting, and so determined.. You inspired Dad and I to do the very same by your courage and resilience, so that we also, could face our adversities. What incredible gifts from a beautiful boy! Thank you for showing us that there is still beauty in the ashes of life, even when we don’t always believe it or feel that way..

Brian Michael, you are a treasure and my heart, the miracle baby that I never thought I would have. I had resigned myself to thinking that I would never have children, but God obviously had other plans and you even arrived a month ahead of schedule! Some things are just meant to be. Granted, you were not necessarily the son that I had expected, and I was quite overwhelmed by your disabilities, especially in the early years. However, these past 17 years with you has shown me that your story is not a tragedy, rather, it is a complex/ genuine/ challenging/ intense love story that is victorious because of the choices that we have made together, despite the things that are out of our control. The outcomes and endings could have been very different, but overall, I think you would agree that your life is one of great value, meaning, and love and we wouldn’t have it any other way.

As you begin your 18th year of life this week, I wish that the desires of your precious heart will be fulfilled in this new year. I wish you continued joy, strength, and love, especially in the tough times ahead. I pray that you, Dad, and I can continue to make new memories that we can all treasure together. I pray that God will protect you from head to toe with good health and give you the grace that you will need to live your best life. Thank you for being our most prized possession and for the joy that you continue to bring to our lives and to all who are so fortunate to know you. Our lives are forever changed for the good because of you! Happy Birthday, Beautiful Boy! 🎉🎉❤️❤️😘😘

All My Love,

Mom 😘😘😘😘😘❤️❤️❤️❤️