Did You Know?

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! 😊👍🏻

I

P

Talk To Me…

My husband and I come from a large extended family of gregarious talkers, so there is never a lack of conversation whenever all of us get together. Our gatherings are fun, often spirited, and memorable, with the time spent going much too quickly. It took Brian a long time to be comfortable with these extended family paloozas. Even today, Brian still needs his space to adapt to a family party, for walking into a crowded room is too overwhelming. It’s always better if we arrive first, greeting relatives as they enter, one at a time. The same holds true on our own home turf: Brian will find a comfortable space and prefers if you come to him. In the early years, we often had to leave various places due to the sensory overload of people and unfamiliar surroundings. Sounds and sights during that time were just too much for Brian to process. We would leave these events feeling sad and isolated, wondering if it would ever be possible to be our gregarious selves again or if it was our fate to remain contained within the walls of our home. I often thought it was an especially cruel blow for Brian that he could not speak and tell us what was on his mind, unlike the rest of us spirited conversationalists in the family.

I still wish I could hear my son speak, even today, and often dream about it vividly…..In my dreams, Brian and I have had these amazing conversations , covering various topics of interest. I am flabbergasted by Brian’s insights, his astute observations of people, places, and things. He has preferences, opinions, passions, and dislikes, and has no problem expressing them. He has hopes for today and tomorrow, as well as plans for his future. He loves his family, school, and community activities and assures me that everything is and will continue to be OK. He looks deeply into my eyes with a knowing stare and says: “You worry too much, Mom!” I agree: “Yes, Son, you are right. I try not to worry so much. I think most of the time I take things in my stride, but sometimes, I just get so overwhelmed. You go through a lot and at times I feel so helpless, as I can’t always make things better. That is so hard for a parent . That is the nature of motherhood and the price of love.” Brian gives me one of his reassuring, “death grip” hugs, then suddenly the dream is over, leaving me to wonder long afterwards if perhaps all of this really happened after all….

Anything is certainly possible, so maybe Brian will acquire more language over time. He does say “Mom” and “Dad” now, and this only happened in the past year. I can see Brian positioning his mouth, trying to the imitate sounds that we make. However, apraxia makes this goal very difficult; the disconnect between the brain and oral motor functions is like trying to climb a mountain without the proper gear. Still, I am hopeful of what we may hear Brian say one day in the future. The fact that he could finally utter two of the most important words in the world was a miracle. I am very realistic though, and don’t expect Brian to engage in a conversation, but some words here and there over time would be wonderful. It would especially come in handy when Brian is in distress or sick, like he has been this past week. We don’t always know at first what is bothering him and often have to go by body language and other signs to reach a conclusion or diagnosis. This can be frustrating for everyone concerned and adds to the angst and exhaustion that we all feel.

While we don’t always know what Brian is thinking, I am grateful that there are tools for non-verbal kids to express themselves with, such as Picture Exchange Communication (PECs), sign language, and various speech apps. Brian does use a speech app called “Proloquo “ on his iPad to communicate his wants and needs. There is no perfect system and each one has its pros and cons, but these resources do give us an insight as to what Brian is thinking about at times and have helped him to initiate “conversation”. It is our hope that Brian will continue to expand his vocabulary with Proloquo, and become more spontaneous in using it. Who knows, perhaps there will be new means of augmentative communication in the future that will increase both receptive and expressive language in a totally different way. You just never know and I like to remain hopeful of what could be, not only in communication, but in all facets of Brian’s life.

Being engaged with the community also involves communication, so in addition to an augmentative communication device, Brian also carries a Velcro wallet with a “student picture ID” card that lists his home address and my cell phone number. This tells people who Brian is and who to contact, should Brian ever get separated from us. I shudder to even entertain this thought, but things can and do unfortunately happen. Brian is learning to show his ID when asked his name, and is making food purchases at his school cafe with a few dollars each day. Brian also has a name badge that he will use starting next month at a local pizzeria where he will distribute take out menus to customers a few hours a week. My husband and I are excited for Brian to have opportunities like these to engage with others by any means of communication available that will accomplish this goal. I believe such experiences will expand Brian’s communication opportunities and hopefully encourages him to be more self -motivated with expressing himself over time, with LOTS of practice, of course!

I’m glad that Brian will always have different ways of communicating and engaging with others, otherwise his world would be a very lonely place. Regardless of these opportunities, I still look forward to the day when my dreams of conversing with Brian will come true, in all of their wonderful, extraordinary detail! We will have so much to talk about! I suppose that is exactly why eternity is necessary, because time restrictions won’t work for us. All of the unspoken words, or times that I wondered exactly what Brian was thinking or feeling will be revealed! How amazing that will be! I’m sure Brian’s first words will be: “See, Mom! I told you everything was going to be OK! Now can I play on my iPad?” 🤣🤣

Until next time, thanks for reading! 😊

O

What I Fear The Most..

I was recently going through some old pictures of Brian when he was a baby and was reminded once again how quickly time has flown, despite many agonizing moments along the way when the opposite was also true. I can’t believe that Brian will be turning 17 years old this Summer- how did that happen?! These precious photos tell me otherwise as I look at them. I remember so well the story that accompanied each one like it was yesterday, forever etched in my mind. A mother’s joy and sorrow all wrapped into one heart that will forever love her beautiful boy who will always be a blessing, and who is also vulnerable in the world. As Brian is getting older, so are Jim and I . Quite frankly, I’m in deep denial about turning 59 this year. In some ways, it doesn’t seem conceivable, though my body often reminds me these days that I am definitely not the spring chicken that I used to be. My energy level is not quite the same, and my wrinkles are reminders of my years of too much sun on the beach without sunscreen, though I would prefer to view each one as “wisdom stripes”, earned by years of life experiences.

As young as I would like to think that I am or remain in my mind, the reality is of course, we all grow older and will eventually die. It’s the inevitable part of the life cycle that each one of us will face. This harsh fact often stops me cold in my tracks and invokes a fear like no other: when Jim and I die, what will happen to Brian? It’s the unanswered question that keeps many special needs parents awake at night; I have woken up in a cold sweat on several occasions because of this nightmare that I have dreamt about while in a deep sleep. It permiates my thoughts and actions and is the driving force behind what and why I do as much as I can for Brian now while I am still alive. My husband often jokes that perhaps modern medicine will advance to the point where one day, all of our body parts that have worn out will be replaceable and we will become bionic people, living to a ripe old age. While anything is certainly possible, the reality is, Brian will most likely outlive us and this truth literally scares me to death.

Why am I so afraid? Brian will always require a tremendous amount of support in order for him to live a fulfilled/ productive life and there are no guarantees that such resources will be available to him in the future after Jim and I are gone. Writing these words pains me so much to consider, even for a second, but it is the stark truth. Brian’s disabilities are such that while he does make his progress, and will continue to learn throughout his life, he will always need permanent and consistent support. Brian will always require help with everything throughout his day, and when you break that down, it can literally be hundreds of steps that are necessary in order to accomplish a whole host of tasks. It truly is mind- boggling and overwhelming when you think about all the steps a person takes to complete an average day.

Adult programs and residential facilities for the disabled are slowly emerging, but the need is so great and there are no guarantees for the right placement . There will be many disabled young adults in the near future who will require supports of various kinds, but there aren’t enough options right now to accommodate everyone. This is exactly why graduation from special education programs at age 21 can be so frightening, with such an unknown future ahead for many graduates. I try not to think about this point too much, as Brian still has some time left in school, but am certainly aware that graduation day will come. I hope to have a game plan in place before that time if at all possible.

I often pray that Brian will pass on before Jim and I. That may sound morbid or strange to some people, but the reality is, no one will ever care for your child the way you do. I realize how absolutely devastating this would be and I would be forever heartbroken. Yet , when given the choice, this would still be my wish. No one will understand all the quirks, nuances, strategies and what your special child needs, the way you do. No one will ever love your child the way you do. I have no doubt that Brian will experience a sharp decline across the board if we die first. I see how dramatic little changes can effect Brian, let alone a major loss. So, for these reasons, and many more, that would be my preference if I had any say in the matter, which of course, I don’t. Yet, in the meantime, I will try my best to take care of myself so that I can live to be a bionic old lady and at least know that I am doing everything I can to be there for my son.

How do I prevent this fear of leaving Brian behind from consuming me altogether? The answer is doing my best and trusting God for the rest. This is not easy and requires a daily declaration of faith that does not come naturally- at all! It is often a painful struggle and a series of “why” questions or “ how”… I don’t have the answers at all and sometimes all I have are my tears and broken heart. Yet, I have also seen doors open unexpectedly, opportunities arise, or people, aka, “angels” who were heaven sent just at the right moment to help us help Brian.

There is no reason to think that miracles wouldn’t continue to occur throughout Brian’s lifetime. In fact, I expect to see many more along the way! In the meantime, a willingness to try, to explore, to risk- all of the things that we special parents already do on a daily basis to help our kids is what is most important . I know I am happiest when I am busy helping Brian live his best life; it makes me feel productive and also gets my mind off of my fears and other things that I can’t control.

Like Brian, I continue to trust daily that somehow, someway, his needs will be met, not only in this moment, but for all of his remaining earthly moments. This is true even when I don’t understand how it will be possible, even when it doesn’t make sense, and especially when there seems to be no hope. Hope is what gives me the courage to face the good, bad , and the ugly in Brian’s life and always will. Without hope and faith, life is just too hard to manage on my own terms. I am glad that I will never be alone on this eventful special needs journey, no matter what comes, and that makes all the difference!

Until next time… thanks for reading! 😊

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