Sometimes when people meet Brian for the first time, they will ask me after a short while whether I knew before Brian was born that he had Down syndrome. This question has actually been asked of me many times over the years. I understand a person’s curiosity on the subject and can envision what they must be thinking as they ask this question and why they are asking it in the first place. I’m sure for some, it’s hard to imagine not knowing such information ahead of time, while for others, it wouldn’t make a difference. I happen to fall into the latter category for very specific reasons.
For my husband and I, the outcome didn’t matter. We believe all life is sacred and a gift from God. While knowledge is certainly power, there is also a risk of a miscarriage with an amniocentesis. Any risk was too great for us to consider, especially since we thought that this would be our only opportunity to have a child of our own. Regardless, it would not have changed anything for us, except for having information ahead of time about Down syndrome. Ironically, this was the only time in my life that I did NOT want to know anything regarding Brian ahead of time. I wanted to focus strictly on my health and the health of the baby- anything more would have been too stressful. I didn’t want to impose unnecessary stress on an outcome that was already predetermined. There would be plenty of time after Brian’s arrival to read up on everything that Jim and I would need to know in order to care for him going forward. This ended up being the right decision for us and was exactly what happened. In the meantime, I wanted to remain positive and hopeful that we would have a healthy, typical baby. However, things didn’t go according to plan in the way that we had hoped during the pregnancy. In fact, it was quite the rollercoaster ride of ups and downs from almost the very beginning.
Brian was diagnosed with a fold in his neck called a nuchal fold translucency at 9 weeks old, followed by a hole in the center of his heart at 18 weeks old. I was then diagnosed with intrauterine growth restriction (IUGR) where Brian stopped growing at 7 months, followed by bedrest in the hospital for 5 weeks. Talk about eventful! I didn’t need an amniocentesis to tell me that Brian had Down syndrome, I already knew it in my heart and had plenty of time to consider it during my bospital stay. Yet, a part of me wanted to remain hopeful, perhaps there was still a chance that these anomalies were limited unto themselves and had nothing to do whatsoever with a developmental disability. So, I hoped, prayed, gained 25 lbs on bed rest, and went to Lamaze classes in the hospital to keep my mind occupied. I also knew deep down that a C-Section, (with LOTS of anesthesia), was in my future and this also happened. What I wasn’t prepared for was the overwhelming feeling of sadness, grief, and fear that followed, once Brian was born at 36 weeks and 5 lbs later. I couldn’t believe how tiny he was! There were oven-stuffer roasters twice his size! How would we ever care for this baby who would need so much in every way from the moment of his arrival and for the rest of his life?
Fast forward from Brian’s birth until now. Jim and I immediately became students of Brian and are still learning to this day. I didn’t know there was so much entailed in caring for a disabled child. I didn’t know how truly overwhelmed and exhausted I would feel. I didn’t know how much I could deeply love until Brian was born. I didn’t know that someone could depend on you so much and always will. I didn’t know that it was possible to care so deeply for a child so precious until I held Brian. I didn’t know the price it would cost, or the sacrifices that would need to be made in order to raise Brian and to care for him. I didn’t know how much I would cry and continue to do so when I see how my son has and will always struggle. I didn’t know that I would become a strong advocate for my son. I really didn’t know that there was such a thing as Down syndrome and autism together! I didn’t know that I could feel so depressed and hopeless, especially in the early months following the dual diagnosis. I didn’t know that I would meet some of the most incredible people because of Brian and his disabilities . And there is so much more that I don’t know… I am still learning and always will be, but there are also lessons that I have mastered, and things that I do know with all of my heart and being…
I do know that I am meant to be Brian’s Mom and Jim is meant to be his Dad. I also know that Brian is a blessing to all who meet him. I know that Brian has many purposes in this life, some apparent to me, others not yet revealed, but all for the good. I know that Brian will continue to make his mark on the world, in his own way, one day at a time. I know that Brian loves with all of his heart. I know that Brian will always struggle with his challenges. I know that Brian has built character in me in ways that were often very difficult, but ultimately for his good and mine. I know that Brian and I have a deep love for each other, a gift I am forever grateful for. I know I often get impatient and frustrated by Brian’s disabilities, but he is incredibly understanding and forgiving, despite my human flaws. I know that one day, I will no longer have the ability to care for Brian the way I do right now, and this scares me.. I know that despite this particular fear, (and many others), that God will always make a way for Brian, because He created him, loves him, and has a plan for him, even though the details of this plan are yet to be revealed. I know that my faith has always served me well throughout my entire life. I know that ultimately, all things will work together for the good.
While I did not know that Brian had Down syndrome in utero, there were many things since his birth that I have come to know and continue to learn, both willingly and unwillingly. This is the eventful life journey that we share with Brian: milestones, joys, a deep mutual love, heartaches and heartbreaks. This is not the life that I would have chosen for myself if I knew ahead of time what the implications of my choice would have meant. Yet, I can’t imagine my life without my son, despite everything that has happened.. This much I know with 1000% certainty and with all of my heart. ❤️❤️❤️❤️
Until next time, thanks for reading! 😊👍🏻