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! 😊

The Certainties Of Special Needs Parenting

Parenting has been one of the most rewarding and difficult experiences in my life, and, I wouldn’t trade it for anything! Being Brian’s Mom has given me an indescribable joy that is bar none on the life experience scale, yet it’s also been simultaneously exhausting and sometimes frightening. Jim and I will always remember when we first brought Brian home from the hospital, lying on our bed with this precious baby, both of us wondering aloud how exactly were we going to care for this adorable creature? He wasn’t discharged with a “How To Parent Brian” manual. We wanted to know and do everything right of course, so typical of first-time parents.

In those early days, most infants, special needs or not, are on an equal playing field as far as their care is concerned: feed, change, bathe, repeat. Brian was like that for sure, so the obvious differences between a typical baby and our son became apparent to us ever so slowly, but surely, with the difference in the developmental tracks becoming wider and more dramatic over time. As the developmental track widened, so did the full realization of Brian’s disabilities, and how they were here to stay. It has been quite the journey so far raising our son, with more adventures to come, no doubt! We have learned over the years that there are absolute certainties of special needs parenting that will occur, for better or for worse, and more often than not, it’s best to embrace each one wholeheartedly:

1. You Can Only Control Yourself

As much as we would like to control others, we simply can’t. It certainly would make our lives easier though, especially in a heated IEP meeting discussion, during a consultation with a doctor who doesn’t quite get our child, or the 10th phone call to a state agency for resources . The powers of persuasion and advocacy work much better, but these efforts take time, research, planning, energy, and so much PATIENCE . It’s our legacy as special needs parents and always will be.

2. The Highs Will Be Higher And The Lows Will Be Lower

I have found that raising Brian has often been an “extreme” experience, especially when it has come to the achievement of developmental milestones. Brian took first steps at 4 years old, said ” Mom” and “Dad” at 15 years old, and still needs assistance with all activities of daily living (and always will). Conversely, we appreciate literally EVERY step that Brian achieves and celebrate these moments like the grand prizes that they are. We know how hard Brian works at the attainment of any goal, and feel his struggles deeply ever step of the way.

3. It Will Always Take A Village

When you have a disabled child, you will always depend upon the assistance of others to help you. I am very grateful for “Brian’s People” and how they enrich his life, as well as ours. Like most special families, we have had our ups and downs over the years with less than stellar school placements, home therapists, or social activities for our kids. At the moment, we are in a very good place with a wonderful school/ bussing personnel, home therapists and recreational programming, but I realize this can and will change at some point. I know that I can also be as resistant to change as Brian is, especially when the status quo is working just fine. Support from other special parents has been such a gift and helps especially during the inevitable difficult times. One of the greatest blessings from Brian’s disabilities has been the friendships formed with others special parents, whom we would have never met otherwise.

4. You Must Take Breaks Lest You Go Insane

I love Brian with all of my heart, but I can become easily overwhelmed by his comprehensive care, to the point where I had previously neglected my own physical and mental health. I finally came to understand that if the Mother Ship goes down, I won’t be able to care for my son at all. This reality forced me to make a necessary mental shift. The first and most important priority is my own self care. Going back to Certainty #1- I can’t control anyone, but I can control myself, my choices, and my actions. I choose now to take care of myself while Brian is occupied so that I can take care of him, plain and simple. My self care takes many forms and may be just for a few hours or a few days when I’m able to arrange it, but the point is, I do something for myself that gives me a break and a respite. It is a necessity, not a luxury!

5. Your Child Will Bring Out Both The Best And Worst In You

I never realized how patient I was until Brian was born, yet simultaneously I get frustrated over so much of the repetition in our lives as a result of his disabilities. I’m grateful for his home therapy team, yet some days I don’t want anyone in the house. I’m glad that I am the Captain of Team Brian, but often wish the responsibilities weren’t so many and intense. I never knew I could multi-task so well on Brian’s behalf, resulting in his best life, but it has come at a personal price, hence, the importance of Certainty #4.

6. A Sense Of Humor Is Your Best Weapon Of Defense

There is no doubt that special needs parents need to arm themselves daily with a strong sense of humor in order to diffuse those challenging moments that our children inevitably create. I’m sure we parents could collectively write a book about such escapades and it would become a bestseller! Brian has certainly had his moments, like the time he threw his prescription glasses out the school bus window at highway speed. Or the time he decided to throw all of his shirts into the toilet and attempted to flush them. The best was when our neighbor rang the doorbell out of concern, as she saw flickering lights for several minutes from our first floor, when it was just Brian stimming on the light switches, so it wasn’t a SOS call after all. And on and on it goes- not necessarily funny at the time, but our kids do teach us how to eventually appreciate the humorous side of most situations.

7. You Will Always Have That Fear Of Leaving Your Child Behind

This fear is an absolute certainty, no matter how minimally or profoundly disabled your child is. You worry about what will happen to your son or daughter if you should die first and for good reason: no one will ever take care of your child the way you do. With improved modern medicine, it is very possible that our children will outlive us, though this is certainly not always the case. There is no way to fully reconcile this major concern, no way to control the outcome of what will actually happen and that’s very scary. In the meantime, we give our kids every opportunity to be independent, have them participate in overnight camps, school, respite, etc, with the hopes that they will glean skills along the way, get used to being with others, so that they are not exclusively attached to us. It is the ultimate faith walk, so I try to remember how faithful God has been in providing for Brian up until this moment with all of the resources that he needs, believing that this will continue, despite not knowing exactly how for the long term. Someone once shared with me: “I do not know what the future holds, but I know who holds my future”. I believe this and so does Brian, as he lives his life each day in total trust that his needs will be met. I can learn so much from my son about faith in action!

8. Your Priorities In Life Will Change

Our kids also have a way of changing our perspective on what is truly important in life, eliminating what isn’t, and teach us how to hold on to what is most important. Things like: kindness, compassion, understanding, patience, simple pleasures, belly laughs, deep hugs, and respect. Material things don’t matter as much, being together does! Time is too fleeting and precious to spend it with those who don’t want to understand you and your disabled child. Brian has reinstated that child-like wonder in our lives with his love for music, water, and board books. His joy and smile are contagious and he loves with his whole heart once he gets to know you. I’ve been told numerous times that Brian gives the best therapeutic hugs ever! Our kids do not not what it means to become jaded or to hate others, two blessings that would make our world a much better place.

9. Don’t Forget Your Daily Dose of SNM!

Last but not least, none of the aforementioned certainties can be fully realized or appreciated if you don’t attain the basics first: sleep, nutrition, and movement (SNM). I find quality sleep in particular is becoming more elusive as I get older, but I try to get to bed at a reasonable hour, eliminate all electronics at least an hour beforehand, etc. Sleep deprivation is the absolute worst and can deplete all coping skills. Disrupted sleep is quite common in special kids also, especially around adolescence, hence, why Brian takes medication for sleep, which has been a total God send and has saved me from losing my mind! Now regarding nutrition- I love junk food just like the next person, but definitely feel better when I eat less sugar, so I try not to have too many sweets in the house. Finally, incorporating some type of purposeful movement daily, whether at the gym, walking around the block, or even around the house, helps my joints, energy, and well being. I admit it can be a chore and I often lack motivation, but of course am glad when those FitBit steps have been accomplished, with my mind still intact! 🤣

Certainty #10 – Until We Meet Again 😊

Thanks for reading❤️❤️❤️