You Don’t Know Until You Try

Life is an adventure and is often filled with unknowns, risks, and getting out of our comfort zone. It can also be quite mundane, repetitive, and painfully slow, in fact, I believe I have actually seen grass grow while waiting for certain things to come to fruition… Such experiences also describe precisely what it is like to raise a child with special needs. More often than not, this journey for most of us is the latter. We wait years for our disabled children to accomplish certain goals. We often wonder exactly how much longer they are going to remain in the Land of One or Two Step Directions.. We parents, like our kids, are so used to the repetition of routines and behaviors, that literally any little change can even throw us completely off guard. We adapt to our own version of “normal” in our special needs circles and homes so much so, that sometimes we forget there is a whole, big world out there to explore. The very thought of new adventures is exciting and simultaneously frightening. It also involves huge planning , coordination, and risk taking. We may fail, and it’s certainly easier to stay home, so perhaps it’s best not to rock the boat. Yet, how will our kids grow, become part of an inclusive society, or just be exposed to new things, if we don’t try?

As Brian and I grow older, I realize how important it is for both of us to expand our comfort zones as best we can, when we can. I feel some of the best gifts that I can give to my son are various life experiences that will engage him, help him to learn, and provide him with inclusion opportunities so that he can also experience life to the full, liberty in all its forms, and the pursuit of happiness, just like the rest of us. How fortunate Brian and other disabled individuals are to live in a time where most people are accepting of others with disabilities. While things are certainly not perfect, Brian is able to do things that were out of the realm of possibility even a few decades ago for special needs folks. There is still much work to be done, but all things considered, I think Brian would agree that his life has purpose, joy, and beauty because of the huge village that supports him, as well as the experiences he has been exposed to, both in good and bad times.

We decided to totally break out of our comfort zone and return to Dallas last week during the Spring break. My husband had company business for a couple of days, so Brian and I were left to our own devices with the rent-a-car to “tour and explore” various adult special needs programs that I had contacted and set up appointments with previously . I was excited and very anxious at the same time, both looking forward to seeing what would be potentially available to Brian after graduation, while dreading how he would handle the many transitions during our stay in Texas. Admittedly, it was going to be a LOT of new/unfamiliar places, people, and things for him to take in during our 6 day stay. It was expecting a lot from Brian. I already knew from previous experiences how he reacts in these new situations, so a part of me definitely wanted to be back in my NJ Comfort Zone, where it was mostly peaceful and uneventful. Yet, there was also a part of me that was determined to proceed, despite the outcome, whether it was the worst or best idea ever. It was a risk too good not to take. We had also allotted research, money, and time into this trip, so it was too late to turn back.

I decided on our first day on the road in Texas to acknowledge, then ignore my anxiety by focusing on my driving on the Dallas highways. These roads definitely had my undivided attention; thank goodness for Waze and The Beatles to keep both Brian and myself calm. Brian did scare me to death during the ride to our first tour, however, when he opened his door while I was driving 70mph on the turnpike! Luckily, no one was behind or beside us- that in itself was a major miracle! You can be sure that the car doors were super locked from that point on! As predicted, transitions out of the car to a new place were difficult each time. I had to be extremely patient, hold my breath, and wait Brian out and eventually he would decide that he was ready to enter a new building. After that, he was totally fine, in fact, much to my delight, he was quite engaging with whomever he met, once he settled in. I was so proud of him and was reminded in those wonderful moments last week why it is so important to push our kids and ourselves to try new things: the rewards are often great and it gives our kids new opportunities in life that will help foster their independence.

We learned a lot about the adult programs that we saw and the staff /clients certainly learned a lot about Brian and I. It was a wonderful information exchange and so great to be in the company of caring/knowledgeable staff and endearing clients. Brian was included and treated like a special guest: he responded voluntarily by communicating with staff and even a few clients with the Proloquo speech app on his iPad mini. Brian introduced himself several times via Proloquo who he was, his age, where he lived, where he goes to school, and most importantly, what he wanted to eat, lol! It was such a blessing to see Brian interacting with new people and genuinely enjoying it.. He initiated waves and handshakes with his new friends, where ever we went. Overall, Brian did really well in these new environments and any challenges that arose were entirely predictable. He is maturing, growing up, and seemed to thrive on these new opportunities as much as I did. Most importantly, these successful moments in Dallas gave me the reassurance that Brian will always continue to learn and adapt, despite the transition difficulties and other challenges that he will face in his life, no matter what, because he has shown that he is capable of doing these things. He will make his own way, in his own time, just like he always has- I really needed this important reminder!

I also believe God knew that I needed to see concrete evidence of just how far Brian has come last week compared to the beginning of our journey…Those early, heartbreaking days when we were prisoners in our own home due to severe sensory overload were so excruciatingly painful…I thought we would never see the sun again…I felt helpless and hopeless for a long time as I watched my boy struggle with so many challenges, yet, behind the scenes, God was actually creating something very beautiful out of the ashes of our brokenness and pain. Over time, I would come to understand and see the rich tapestry of our lives with our special needs son, including the many knots and not so pretty colors, interwoven with a beautiful pattern and spectacular colors throughout.

When I choose to focus on those beautiful colors of my life’s tapestry, I see just how blessed I have been to experience so many joyful moments, to see Brian triumph, etc. despite the pain and heartache in this life that is inevitable for all of us. Choosing wisely and trusting God for all of the details in my life, especially the scary ones, ( like Brian’s future) enables me to experience the joy and appreciation for the good in this life right now, in this very moment. Otherwise, it’s just too hard and I end up missing out on many precious times in the present because of worry and fear- I have definitely been there and have done that many times! I still struggle with fear and the unknown, so I continue to make a daily decision to hand over ALL of my problems and concerns to God and trust Him for the outcome. He is ALWAYS faithful and has richly blessed me, despite my doubts and objections that His timing is often too slow for my liking, lol. When I look back at God’s track record in my life, He has been incredibly gracious to me.

Whenever I need a role model for total faith and complete trust, I need look no further than to Brian. He, like all special needs children, is a shining example of daily faith in action: Brian trusts wholeheartedly that all of his needs from sunrise to sunset will be taken care of. He has great faith in his family, teachers, volunteers, and caretakers that he will be provided for. He never doubts or questions any of these things. Brian just gets on with living his life, step by step, with amazing grace and tremendous courage. He is my hero and inspiration to live and love in the literal moment, allowing us both to enjoy and deeply appreciate all good gifts from Heaven. I don’t think it’s a coincidence that Brian was given specifically to us. Our lives are indeed filled with struggles and unknowns and always will be..But there is also great hope, joy, and evidence of God’s goodness in the midst of our challenges, to sustain us and encourage us. I will continue to take my cue from Brian and others like him to see and know that taking risks, like they do, is well worth the rewards that will follow.

Until next time, thanks for reading!

Good Grief!

Grief is a natural part of life that will happen to each one of us as a consequence to a major loss. No one escapes grief, though we may think we can outsmart it by distracting ourselves. We may try to avoid it’s painful sting and the fall out that will occur as a result of it’s presence. And we may be able to keep out running grief for quite a long time, but, eventually it will win. Ironically, accepting grief on it’s own terms is actually what is needed in order to heal and move forward. However, it will take a tremendous amount of courage and strength to transform grief into healing.

This process is absolutely exhausting and some days, it will seem like we are not making any progress at all, like we have reached a final plateau with no change whatsoever . If we are willing to do the work, we can eventually experience healing, though our scars will always remain. We will never be exactly the same as before our losses, but this is not necessarily a bad thing… We may have also acquired a greater capacity to love and demonstrate compassion for others and ourselves when we come to the other side of our grief. We realize we can still live our lives fully, even if we can’t return to the past.

I have learned in my own life that grief is not restricted only to the passing of a loved one, though this is certainly the hugest loss that one can experience. Grief can also encompass the loss of hopes, dreams, or major disappointments in life that were totally unexpected. We made our plans and were confident they were going to work out, but in the end they did not. A sudden change in circumstances beyond our control totally eliminated the outcome we hoped for, despite all of our best efforts. An unexpected illness, financial disaster, a broken engagement, divorce, infidelity, a son/daughter addicted to drugs, or having a child with special needs : these are just a few of life’s major events that can cause intense grief and feelings of major loss. Since grief is inevitable at some point for all of us, what can we do the day it knocks on our door? How will we learn to live with and learn from grief in order to eventually move forward when we are ready?

Brian’s arrival into the world was a mixture of intense love and grief for me. It’s never easy for parents to hear that their baby was born with a disability. Yet, there were signs during the pregnancy that things were not quite right. During the final 4 weeks while I was on bedrest in the hospital, I had a lot of time to think about Brian, be scared, and simultaneously hopeful. I just knew in my heart that he was going to have special needs, but believed that we would be empowered to raise him as best as we could , even if we didn’t understand exactly how. This is precisely what happened, but the grief was still quite intense when the harsh reality set in of what Brian’s life journey would entail.

Life was not going to be like what we had hoped for Brian. We knew there were going to be many challenges, though we didn’t fully understand to what extent in those early years- (perhaps there is a good reason why the future is not revealed to us after all… ) I grieved the life opportunities/milestones that Brian would never have and the medical and educational challenges that he would face…The fear of Brian’s future loomed over my head like some ominous black cloud to the point of distraction where I missed precious moments in those early weeks. Grief held me prisoner and life was just a big blur of feedings, diaper changes, and doctor appointments. The loneliness and isolation felt never ending…

Fast forward to early intervention, special education, a move to our current town almost 15 years ago, a special Mom’s support group, recreational activities, and coming to know other special families over the years: all of these things have collectively helped Brian, my husband, and I in many wonderful ways. Brian continues to learn and so do we, from so many other special families , especially those with older children, as well as those doctors, teachers, therapists, camp counselors, and volunteers.

Our lives have been enriched by these connections and if it weren’t for Brian, we would have never met the awesome individuals and families who have made such an impact and difference in our lives. We are truly grateful for all of these blessings and I believe God planned it this way all along…Despite all these gifts, though, the grief of Brian’s disabilities still remains and I believe it always will. Perhaps it’s not quite as intense as it once was, but there are reminders or triggers that can set off my grief, sometimes at the most unexpected times or ways. Moments when I will say to myself: “ you should be over the fact that Brian will not have a girlfriend, live on his own, or have a job by now”! I know this intellectually, of course, but the 18 inch journey from the head to the heart can be a very difficult one. Grief has no expiration date and is often an unexpected visitor – only time can mitigate its effects, and even at that, it can sometimes be as intense as the first time, even several years later..

I have learned to finally accept grief after resisting and fighting it for so long. The alternative was illness, lack of sleep, not taking care of myself, etc. I will never like grief, but I accept it now as a part of life and know from my previous experiences that I will get on the other side of it. I may be heartbroken and bruised, but I am also more resilient, and in touch with my life and feelings, as opposed to being shut down and detached from life. I know in order to heal and move forward, I must be willing to acknowledge my grief, feel the feelings, and allow God to do His work in making me whole again through the tools/ resources that He has provided.

One of the tools that has been invaluable in my grief recovery is similar to the 12 Steps that are the hallmark of groups like Al-Anon, when families and friends have been profoundly affected by a loved one’s addiction. I discovered one day when I substituted “Brian’s disabilities” for the actual addiction, the impact and truth of the first 3 steps were just as powerful:

1. “We admitted we were powerless over Brian’s disabilities-that our lives had become unmanageable.” This is my “admission” step: I can help Brian, but I am powerless to change the reality that he is disabled, as much as I would like to. When I initially had a very difficult time accepting this fact, my life indeed became extremely unmanageable to the point where my physical and mental well-being were significantly affected. Self care was non existent, sleep eluded me, and despite my desperate efforts to control every aspect of Brian’s life with interventions, nothing was going to change our reality. A long period of grief finally provided the breakthrough that I needed- on my knees!

2. “Came to believe that a Power greater than ourselves could restore us to sanity.“ This is my “awareness” step. I finally recognized that I was unable to manage Brian’s special needs on my own and would always require support. I also knew that I was driving myself crazy up until this point thinking I was responsible for EVERYTHING as it pertained to Brian. I had become obsessive and was insane with worry and fear, knee deep in my grief..I believed in God, but forgot that He actually wanted to help, if only I would let Him.. It’s not easy letting go of what we think we can control, for that is our human nature and we live in a world that loves self- reliance and control. While there are certainly situations that warrant these qualities, no man is ultimately an island, and each one of us will need help, especially in long term situations. I came to understand that Brian’s well-being and success in his life does not rely exclusively on my efforts alone- it was an absolutely insane premise to begin with. What a relief when I finally let go of this heavy burden- it felt like a huge weight had finally been lifted off of my shoulders!

3. “Made a decision to turn our will and our lives over to the care of God as we understand Him”. This is my “acceptance” step. The challenges of special needs parenting are not my alone to bear. God has and will continue to provide the people, places, and things that Brian needs, in His time.. I am asked to trust Him for all of the details, even when a situation seems very uncertain and especially when God is silent, which can be very hard…But, God has been and continues to be faithful to Brian as evidenced over the years by His goodness. My Higher Power has an excellent track record of provision, often giving even more than we expected, so this is how I have learned to trust Him, especially in dark seasons and times of grief. I know I never walk alone, nor does Brian, and we never will…It is a relief to know that God cares enough about every detail of our lives, even our grief, and that we will never be abandoned in those dark seasons of sorrow… We will eventually come out on the other side of our grief, with new strength, wisdom, and a compassion that we never knew possible, as well as the ability to live the full life that was intended for us. These are unexpected gifts from grief that can happen with God’s help, especially when we are willing to trust Him for everything, including our grief, sorrow, and daily provisions. I’m glad that I’m not in charge!

Wishing you and yours provision, peace, and hope during your time of grief; may you experience the love and compassion from The One who is faithful and will see you through to the other side, no matter what..

Until next time, thanks for reading! 😊