What I Wish(ed) For Brian

I always knew that I wanted to be a Mom as far back as I can remember. Even as a little girl, I wanted to have 5 children, all boys, by the time I was 30 years old. I have no idea why 5 kids or exclusively sons for that matter, but that was the vision that I had. Life had other plans, however, so that particular dream did not come true. I always loved children and ultimately became a special educator, ironically enough, after several years in the airline and pharmaceutical industries. I had many interesting work experiences, but my heart’s desire for marriage and a family did not come to fruition until I was 41 years old. I had been engaged a few times and had dated a ton, but it was still very difficult to find someone who shared similar values and goals. I have no regrets whatsoever in my decision to marry later in life; my husband, Jim, is my best friend, a good husband, and a great Dad. Like all marriages, we have most certainly had our share of ups and downs, yet remain solid together. I pray that is always the case: life is hard, sometimes unfair, always eventful, and requires a tremendous amount of fortitude and faith to get through a lot of it. Brian’s quick arrival into our lives especially made us very aware of these truths.

I had given up hope of having children of my own by the time I reached my late 30s, so you can imagine how surprised Jim and I were to discover that I was pregnant. As a matter of fact, we determined that Brian made his introduction sometime during our honeymoon in Hawaii. Life was about to change very dramatically for all of us 8 months later when Brian was born with Down syndrome. There was a lot of upheaval in those early months, so much to learn and adjust to on minimal sleep, as well as grief to process. Slowly, but surely, we adapted to our new normal, focusing on Brian’s health and resources that would enable him to thrive and survive. Brian came through his open heart surgery with flying colors; he was healthier and stronger than before. Brian had early intervention services in our home several days a week starting at 6 weeks old and eventually attended a center-based early intervention school for physical, occupational and speech therapies. We were hopeful for his continued progress in all areas and really depended upon a village in order to make this happen and still do today.

Interacting with typical children within our extended family and with other families made me very whimsical when Brian was about 15 months old. I really wanted him to have a sibling. I am one of 4 siblings and my husband is one of 5. Jim has 18 nieces and nephews and I have 5. Even though my siblings and I are not especially close, I still love my brother and sisters and know that they would be there for me if needed them and visa versa. I wanted Brian to have that experience of sharing with a sibling. I also envisioned another son or daughter overseeing Brian’s affairs, looking out for his best interests later on when we are gone. I really felt another child would be a good thing, but at 43 years old it was questionable, for many reasons. Yet, I had 2 friends who had recently given birth to healthy babies at 44 years old. I was in very good health, fit, and energetic enough. Despite a high risk pregnancy, the odds were not totally stacked against us. My husband was on board with the idea of expanding our family for the same reasons, so, we proceeded and became pregnant immediately again.

This pregnancy started off exactly like the last one. I had “night” sickness, was very tired, but definitely eating for 2. Each doctor visit was unremarkable. Brian and I napped at the same time, which was perfect. Jim was a huge help with Brian after work and on the weekends. Everything was going like clockwork, until one Sunday morning while I was visiting my sister, I noticed there was a little blood or spotting when I used the bathroom. The very same had happened during the first pregnancy, so I wasn’t overly concerned. I was feeling fine and just as hungry as ever. Then the cramping started around dinner time- more blood loss, anxiety, fear, and a visit to the emergency room. Monitors were hooked up, and an ultrasound was performed in the antenatal testing unit in the hospital- there was no heartbeat. You could hear a pin drop in the room it was so silent. There would be no sibling after all. I had a miscarriage at 10 weeks and was absolutely devastated.

I wish there had been another Mom to talk to afterwards, but I didn’t know anyone else who had had a miscarriage at the time. Jim was very sad too, but didn’t know what to say. So life just went on- it had to-as Brian was depending on us to carry on as usual. The loss would eventually be dealt with in counseling, but in the meantime, Brian had lots of needs and a diagnosis of autism one year later. In retrospect, one could say that it was just as well that we didn’t have another child because of Brian’s dual diagnosis. I suppose that is true, but that has never taken away the inevitable sadness that rolls around every October 21, the due date of the second baby. Time has been a healer, but there will always be that bittersweet remembrance of what could have been for Brian and for our family as a whole. I sometimes still wish that Brian had been afforded the opportunity to have had a sibling and wonder what that would have been like… I know Brian would have been an awesome ” big brother”. I have seen first-hand the special relationships that disabled children have with their typical siblings and am in awe. They often share a loving, strong bond and the typical sibling is generally patient, kind, and loving with their brother or sister, the traits that all parents wish for their children to possess.

Raising Brian has taught us over the years to be more practical with our wishes: realistic, yet optimistic, practical, but hopeful. What is the most important wish(es) at the end of the day? As hokey as it sounds, good health and happiness tie for first place. Without these two blessings, nothing else really matters, whether you are disabled or not. Although Brian can not speak, his actions, body language, hugs and smiles tell is that he is happy, at least most of the time, and thank God, healthy too. We know how quickly this could change and never take these things for granted. I know there are many parents who would give anything for their children to be happy and healthy right now. It is so heartbreaking as a parent when you can’t solve your child’s problems or make things better. We can’t solve Brian’s many challenges- they are numerous and lifelong and have been heartbreaking at times for us, but we continue to learn to change what we can and let go of the rest. Most importantly, we live just one day at a time, because that’s all we really have right now, in this very moment….

Until next time, thanks for reading! 😊

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