Rest and Retreat

All parents need a break from the challenges of child rearing from time to time. It’s the most rewarding and exhausting “job” that a parent will ever have! This is especially true when children are very young and dependent on Mom and Dad for literally all of their needs. With this in mind, imagine what it would be like to have a “forever toddler” to raise, where it’s literally days, months, and years of the same needs that demand your attention, energy, and focus.. Sure, there are certainly gains in independence of skills, whether partially or fully. Progress does happen, albeit very slowly. Yet, there will always be some level of parental assistance and supervision required. There will never be a full detachment from oversight and follow through to make sure that your son or daughter completes the task(s) at hand.

Just think about all of this for a moment…You may wonder how is it possible for parents to keep this momentum going for their children indefinitely? The answer to this question is: it’s impossible! No one can sustain such a pace for years without dire consequences. However, this is exactly the story for most special needs parents and their children. They need a break so badly and often can’t get one. It’s an international problem that exponentially gets worse over time, especially as more disabled children get older, along with their aging parents.

I am one of those “full throttle” Moms, who keeps on keeping on, making sure my special son’s needs are met to the best of my ability, leaving no stone unturned. It takes a tremendous amount of coordination and effort to make things happen for our kids. We are negotiating/ advocating for them constantly from the moment they are born until the day we parents are no longer here. Raising special children is often like a race, instead of the marathon that it was intended to be. Sometimes this is because resources are limited, so we don’t want our kids to miss out, so the early bird does indeed get the worm. Other times it may be that our guilt is in the driver’s seat, pushing us to proceed in our mission to help our children, regardless of the price we may personally have to pay for our actions.

This is especially true after years of persistence and determination to ensure our kids are provided for. While extremely admirable, we may or may not notice over time that our energy levels are often depleted and we may become irritable and overwhelmed. Some mornings when we get up, we just can’t face another day of the same exhausting and repetitious routine with our special children. We have finally hit the proverbial wall- we are desperate for a respite! We hang our surrender flag out the window, hoping someone will respond to our call for help.

I am in great need of a respite right now and saying so “in writing” is actually a relief. I don’t know why I sometimes feel that this is a “weakness” to admit that I’m not a super human, as of course this is crazy and irrational. I think it has to do with the unrealistic expectations that I have of myself and proves all the more just how much I need a break. It’s been a year since I have had a long weekend to myself and I truly enjoyed every second of it, once I “ transitioned” and adapted to a new normal. I realize in these type of moments just how much I am like Brian, who also struggles with transitions, but eventually settles in. Perhaps he is more like me than I thought.

I am extremely fortunate to have my wish come true, as I will be going away for 4 days, starting tomorrow through Monday. I will be joining a group of other special Moms at a retreat inn out of state and out of reach of all responsibilities that have to do with Brian, (and life in general). This amazing gift is made possible by A Mother’s Rest ( a non profit organization that supports special needs Moms) at The Terrace Guest House in Maryland and my good husband. Jim is able to work from home and care for Brian while I’m away. They are best buddies and are planning to do “guy stuff” while I’m gone . I’m sure that they will have the time of their lives, as a matter of fact, I’m even more positive that a certain part of them will be happy when I go, lol. But there is a certain amount of truth to that, as we will all need breaks from one another, no matter how much you love your family members.

As I write a to do list for Jim regarding what Brian will need over the 4 days, I am reminded just how much Brian still requires, reinforcing my resolve even more to take a break from everything. I impress myself sometimes with how much and how long I’ve been keeping this pace for my son, but as I get older, I know that I have to start making modifications. I don’t have quite the amount of energy that I used to have, so I need to use wisely what does exist for both Brian’s benefit and my own. I believe this getaway weekend will renew my spirit, my mind, and my body, which is in desperate need of some deep sleep. It’s the little things that truly make all the difference. Achieving these goals of rest and relaxation will enable me to resume with motherhood when I return home on Monday afternoon.

Many special Moms I know would love a break after years of caring for their disabled children. Sometimes they don’t know how to ask or who to ask. Sometimes there is no one to ask. It’s sad and exhausting, so when rare opportunities like A Mothers Rest comes along, they need to be grabbed as quickly as possible for the parents who need it so much. It’s the perfect opportunity for family and/ or friends to step up and help out if possible . Perhaps a weekend away is not feasible, but an overnight or an evening out is a good place to start… For friends and family members considering a gift for a special needs Mom ( and Dads too): think about the gift of your time with their disabled child so that they can have the gift of free time for themselves. It may be the most wonderful present that they will ever receive.

Of course I will miss Jim and Brian this weekend and maybe even be tempted to check in frequently, like I have done in the past during other times away. But I promised myself this time it’s going to be different. I am making this time for myself selfishly and unapologetically all about me. I will make a daily call to get a status update and of course, will be available anytime in case of an emergency, but otherwise, please don’t call me unless there is blood or a broken bone. Everything can and will have to wait until I return home on Monday. This is the best self care gift that I can choose to give myself and I don’t want to miss a moment of this rare opportunity that has presented itself. I am worth it and so are you! Carpe Diem!

Until next time, thanks for reading. 😊

Musings On Motherhood

Being a Mom has been one of the greatest joys of my life, though I didn’t always feel that way…My dream of what motherhood would be like prior to my son, Brian’s arrival into the world and the actual reality when he came, were two entirely different things. Taking on the role of motherhood was nothing like I imagined it would be, especially in the beginning of the journey. I was quite frankly very overwhelmed and afraid. Brian had been born with Down syndrome and those moments immediately following his birth were anything but celebratory.

The atmosphere in the delivery room was very somber, with undertones of sadness, overshadowed by a sense of urgency. Suddenly, Brian was whisked away by a group of neonatologists just moments after my husband, Jim, had held Brian for the first time. These specialists were quietly gathered in the corner, speaking in hushed tones while examining our son. I knew something wasn’t quite right, but what was it? I felt so helpless and devastated as I lay on the operating table post C-section, trying to wrap my brain around what was happening in real time..Tears were copiously flowing, while I silently mouthed a prayer to God, begging Him to spare our little boy from any complications or disabilities.

My obstetrician ultimately confirmed my worst fears by informing us that Brian had Down syndrome and was not going to be a typical baby. He would indeed have special needs, as well as medical challenges. I was already aware of the hole in the center of Brian’s heart at 18 weeks in utero, but I had hoped that this was all he would have to endure. I remember asking God, “ why, Lord?” as I was brought back to my hospital room after the delivery. I kept thinking how exactly would Jim and I rise to the occasion of being Brian’s parents? What kind of life is he going to have?

Numerous scenarios kept playing out in my head, fueled by fear and grief. I had never been so scared in all of my life. It seemed like raising Brian was going to be an impossible task and this was just the beginning of the journey! Yet, I kept going back to those first initial moments when Brian was literally pulled out of my womb, and the first cries of his arrival were loud and clear. Once he was cleaned up and handed over to Jim, I saw the most beautiful baby, wide-eyed, lovely rose bud lips, looking intently at his Dad. Their sacred bond was already established in those initial moments of Brian’s arrival into the world. I was petrified of what the future held, but knew deep in my heart that somehow God would work everything out in Brian’s life ( and ours) for good, despite my fears and disbelief. I chose to believe that God would always be at the helm of Brian’s life, providing for all of his needs. He only asked for Jim and I to trust Him, especially in our knee deep fear of the unknowns in Brian’s life, as well as in those difficult things we knew would inevitably happen as a result of Down syndrome.

Over time, we constantly saw evidence of just how faithful God was and continues to be in Brian’s life, even to this day. Jim, myself, and Brian have been richly blessed, more than we could have ever imagined, by resources and individuals who have helped us to help Brian lead a good life. The Lord has also been our refuge in very difficult times with Brian, carrying us through some tumultuous challenges that we could not have faced without Him. It is God’s grace and and never-ending love that has given us the courage and resolve to face our difficulties both in Brian’s life, as well as in our own lives. Throughout it all, I have been able to experience a very loving bond with Brian, the very thing I feared would never happen due to his disabilities, but God answered that prayer as well.

Fast forward to almost 19 years later and so much has changed, yet lots of things have also remained exactly the same. There have certainly been and continue to be many difficult mountains for Brian to climb, especially with a secondary diagnosis of autism. But our brave son faces each one of his challenges with the most incredible persistence and grace that I have ever seen. Brian is a wonderful and loving young man who is beloved by all who know him. His hugs are legendary and his pureness of heart is always apparent. At school, Brian is known as Mayor McDonnell and with our beloved church family, Brian is the Joy Ambassador, the unofficial greeter at most Saturday Masses. Jim and I are so proud of Brian, he is a wonderful example of God’s perfect love that endures all things, never judges, and is totally accepting. I have become a better person because of my son and continue to learn a great deal about virtues, such as compassion and goodness, through his daily examples.

As I reflect on all of these truths as Brian’s Mom, I have certainly come a long way from that late August night in 2003. God gave me the most precious gift in the hospital that fateful evening. It was hard for me to initially see, but in His time and through Brian, I have experienced the greatest love and have met some of the most amazing people. Life has truly been extraordinary! I have also learned through both my failures and successes how to be the Mom that Brian needs me to be for him. It is definitely not easy, as the multiple challenges of raising a disabled son can be quite difficult, but it is always worth the effort.

I still wish Brian didn’t have to go through so much, but I try to remember how faithful God has been and will continue to be for the rest of Brian’s life, especially when I experience those dark moments of doubt. I have been given the privilege of being Brian’s Mom and the honor of raising him to the best of my ability, a role that means the world to me. It is a gift that continues to grow with time and love and I wouldn’t have missed it for anything in the world! Thank you, Son, for making me a Mom, I love you with all of my heart! 😘❤️😘❤️😘❤️

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! 😊

Take Care Of Yourself!

Walking a mile in someone else’s shoes, gives us insight into our own, as well as others lives. This wisdom will effect how we respond or query when it comes to how another person decides to live his or her life. Hopefully, our experiences will also teach us to be respectful of others, even if we don’t always agree with or understand their choices. Everyone has the right to live their lives as they so choose, as long as they are not harming others. Life is hard enough for each one of us with the inevitable stressors and adversities that will come. For some, their share of hardships will well exceed those of other people, which is so unfair, and often unimaginable…

Everyone of us has a story: we come from backgrounds that still shape our personalities and perspectives today. Many of us have had to endure or are continuing to deal with major difficulties. We are mentally, emotionally, and physically exhausted. In order to endure the long term, particularly in the case of special needs parenting, we must choose those people, places, things that give us joy, acceptance, and hope, for to do so otherwise is not taking care of ourselves, and THAT doesn’t do anyone any good, especially our disabled son or daughter who count on us. They give us an important purpose, even if it comes at a very high price and all the more reason to live our best life.

I have 2 stories in my life: the “Before Brian” story, which was long and the current “Daily Brian” story, which will be for the rest of my life. Life was certainly different “ before Brian”. I worked in the airline industry for 4 years, then in the pharmaceutical/medical education industry for almost 10 years, went to graduate school, and finally became a special educator for almost 5 years, with an opportunity to live in Germany for 16 months in between. I was very blessed to have had different career opportunities and learned a lot from each one. There were freedoms, interesting parts, and mundane aspects of each profession. I met colleagues along the way who taught me so much and visa versa. I would not have changed a thing and am grateful for everything I learned in my jobs, I still apply my pharmaceutical and educational background today, as it pertains to Brian’s wellbeing. Little did I know then just how valuable my work experiences would be today…

Story #2 had a brief transition first of meeting my husband, buying a home, getting married, and having Brian all within 14 months. Talk about major life changes! Then open heart surgery for Brian at 3 months, a few more medical diagnoses by 2.5 years old, including autism, then moving to our current town for better special education services: all of it was like getting smacked in the head with a 2X4! I worked part time periodically after that both in medical education and early intervention, ironically enough, and battled colon cancer. Brian’s needs increased steadily over time, demanding more of my attention. My husband and I made a decision at that point that it would best for me to be home full time to take care of Brian and our home. It was a decision that made the most sense for our situation and still does today. There are pros and cons to both working outside or inside the home, but I know that I have done my best most days for Brian and can focus on what he needs because I am home. This personally gives me peace of mind and is worth the sacrifices I have made to help Brian live a healthy/happy life, at least most of the time . I consider such outcomes to be the most important thing that I will ever do with my remaining time on earth. Yes, it is very hard and often a struggle, but I wouldn’t change a thing.

Of course not everyone has the ability or desire to either work or not work outside of the home due to financial circumstances or personal preferences. There may be other children in the family besides the disabled sibling, or health issues, other preferences or priorities. Each family knows best what works for the them. I believe being a stay at home parent of a special needs son is just as important as parent who works outside of the home: Both positions have purpose, both necessitate multi-tasking, both jobs can be relentless, and both require endurance. I do not derive my self worth from working outside the home or not- having been on both sides of the fence, I would say both experiences have been equally important in shaping my opinions, experiences, and ideals, but that is separate from who I am as a person and how I view myself. I place much more value on my relationships than my work experiences, especially with family and close friends, for in the end, they will matter more than any job promotion.

Some people may assume that because you are a stay at home special needs parent you aren’t up to anything constructive, but nothing could be further from the truth. I periodically have people ask me what I do with my time. I would love to video tape what a day in our home looks like, so they can see! A disabled child requires many things: help with self-care/ activities of daily living, plus advocacy: medical appointments, phone calls, endless government or camp forms, shopping, constant communication with the posse of people involved in his/her life. There’s also planning your disabled son or daughter’s social life/ recreational activities and being there for every one of them. There are no weekends off. And don’t forget the house, for someone has to shop, cook, clean, and do the laundry. After telling one friend all of this a while back, she said she would much rather go to work and considered that to be easier than being home. I tend to agree with her assessment, especially on certain days for sure! It’s all a matter of perspective and our own personal experiences. There is no right or wrong, no matter what side you’re on, both are of equal value and are important.

What’s most important is what we do on our own side of the fence: how do we juggle all of our responsibilities, while simultaneously take care of ourselves? It’s really hard to do so, but over time we see that what we once perceived as a luxury, is actually an imperative: self care. As a former flight attendant, I was taught in training that adults have to put on their own oxygen masks first, before helping others. This is a fantastic analogy of the special needs parenting experience: if we really want to help our children and be around a long time for them, we must take care of ourselves. So, in my case, that could mean going to the gym, meeting a friend, reading a non-special Ed book or taking a nap when I do have an hour or two before Brian gets home from school, for then the second shift begins…I used to feel guilty about this, but as Brian nears 19, and as I get older, I can’t get enough of trying to make time for myself when possible. It’s the best gift that I can give both of us and has become a necessity that I can’t live without anymore.

Wishing us all many self care opportunities that will restore our physical, emotional and mental, well being, whether they are brief or extended, and without self guilt or disapproval/approval from others- we know our personal lives best, what works for us and what we need- we are worth it , so work it! 😊😊😘😘❤️❤️❤️❤️❤️

To My Immortal Beloved

It’s been quite a while since I have blogged on Marvels and Moxie. Life goes on with its many distractions and time continues to slip away at an amazing speed…Usually the focus is on Master Brian and all of his trials and tribulations, but on the eve of his Dad’s birthday, I don’t think Brian will mind if the spotlight shines on his “Best Buddy” instead. In fact, I think Brian would absolutely insist on it, if he had any say in the matter. Jim is Brian’s hero and visa versa. They share a very special bond, forged together by years of challenges, late nights, uncertainty, and a deep love that has truly conquered all and always will. I am in awe and in admiration when I see my husband patiently and lovingly give Brian his attention and support. I see exactly where Brian gets both his deep capacity to love and his bear hugs from. They were destined to be in their roles of father and son, perfect together despite the challenges, each one the better for it…

Jim has always answered the call to step up in both the good and bad times in our marriage, as well as during the challenging times in Brian’s life. He is a reserved man who is committed and fiercely loyal to his family and friends. I have greatly admired his tenacity and it is from his strength that I have often drawn upon when the chips were down during some pretty tumultuous times. There have certainly been times when we as a couple, and a family, have been challenged to the point where I wasn’t sure if we could carry on, but my husband was always the one to believe that we could.

Of course, he, nor we, are perfect. We as a couple, and together as family, continue to make mistakes, learn from them, and try to live our lives with appreciation and joy. We have been blessed to create a life with purpose and meaning, with God as our guide, trusting Him for all of the details, even when it doesn’t make sense or is unfair. More often than not, we are able to find love and beauty in the people, places or things that God places in our path. We continue to be a work in progress and always will be. I’m grateful that my husband is strong enough to answer the call of what is expected of him daily and never gives up, though it would be understandable if he felt like it sometimes, I know I certainly have from time to time! Life’s challenges are hard, relentless, and all encompassing, especially when raising a disabled son. It is a life long marathon that is truly not for the faint hearted! We can only handle things one day at a time, sometimes just one moment at a time..

If Brian had the words, I am sure this is what he would say to his Dad on the eve of his birthday:

Dear Dad,

You are my best friend and the reason why I have joy in my heart! From the moment you held me in your arms after I was born, I knew immediately how lucky I was to be your son. We have shared many fun times, hugs, and challenges. I know it has not always been easy for you over the years. Many would have given up due to the nature of my disabilities, but you have always been my loving advocate and hero. Thank you for all that you do for me! Thank you for giving my life purpose and meaning. Thank you for loving me as I am. I treasure our times together and always will! I wish you a blessed birthday filled with joy and happiness, the very same things that you give to me daily. I love you, Dad! Brian xoxo

Now my turn..

My Immortal Beloved,

As you approach your 61st time around the sun, I am reminded of how fortunate I am to call you my best friend. I love you and thank you for your great love for Brian and I. We are very different people, yet, identical in the things that matter most…We have tested each other, argued, and have been tempted sometimes to throw in the towel. We have also supported each other, loved one another, and persevered under incredible circumstances. Throughout it all, you have been my rock and strength. I am grateful for you and love your big heart! ❤️❤️ I am blessed to call you my “life partner” and wish you the happiest of birthdays that you so richly deserve. May we blessed to celebrate many more together.xoxoxo,Brenda

Good Grief, Thank you!

I find that being thankful does not come naturally to me. In fact, depending on the day I am having , I can very quickly become ungrateful. Let’s face it, as special needs parents this can happen quite easily! Our children’s disabilities present a whole host of daily challenges, as well as many people that we depend upon to help us help our kids. It’s exhausting at best and often frustrating as well. I think relying on others was one of the hardest things for me to accept, especially in the early years with Brian. I naively thought I could handle everything on my own and that Brian just needed extra time, not an army of support. I also thought that I could also do a better job of helping my son.

I didn’t appreciate the intrusion of home therapists starting at 6 weeks old and driving Brian to a center based early intervention program at 15 months old, 35 miles each way; it was a huge burden! Brian’s additional diagnosis of autism at 28 months old shook me completely to the core, so I initially detached from this reality in order to cope. When I look back now, I can’t believe I was that person, but I was…I was fearful and in denial of just how profound Brian’s disabilities were and would always be.. I wanted to isolate and remain in our protective bubble forever. Despite these feelings, I somehow went through the motions and made sure that Brian received what was available to him so that he had the best chance for progress, but not with a thankful heart. Internally, I was in constant conflict with myself, vacillating between guilt and anger. I was often too overwhelmed to see any good at all. My head was a horrible place to reside in during those early days and my heart was broken in a million pieces by an unresolved grief and a deep fear of the future. I was your quintessential Big Hot Mess, a ticking time bomb, ready to explode at any moment, tick, tock, tick tick…

Then IT happened…The morning I could not get out of bed. The biggest, darkest cloud hung over me and I closed my eyes even tighter. My body ached, every muscle sore to the touch, and my head was somewhere in a deep, dark well. My husband had long left for work. Brian’s calls for attention ( he was about 2.5 years old) roused me out of my stupor, and like a slow motion movie, I robotically got up, changed and fed him. Something was definitely wrong with me, literally everything in the daily routine was a Herculean effort, a struggle of mass proportions. I was relieved when nap time finally came so I could put Brian down and that’s when the copious tears came. Hot puddles of water that finally broke free from the dam that held them back for so long. Depression was large and looming in the house of cards that I so desperately tried to hold together for so long. . I just couldn’t hold it hostage anymore. I’m surprised at myself that I kept going for as long as I did..

As painful as this major episode was, it was the critical turning point towards wellness and sanity for me. I finally sought the help that I needed. It was scary and I felt hopeless, but with counseling, medicine, and time, I very slowly started to feel better… Every baby step that I was able to take towards self care was a major victory. I gradually came to understand that grief is a normal reaction to extraordinary losses/circumstances and that there is no way to avoid it. In fact, facing grief and acknowledging its place in loss, whatever the loss, is necessary, otherwise you remain stuck and are unable to move forward in life. That’s exactly what had happened to me as a result of Brian’s disabilities. I had never properly grieved the loss of dreams and hopes that I had for him and for myself as his Mom- somehow, I lost my way. Down syndrome and autism were unimaginable to me back then, and often is today, as I see daily how both disabilities greatly impact Brian’s life. But the difference is now, I have finally accepted my own limitations, along with Brian’s. Life can still be beautiful, despite the messy hard parts that will always be there too.

N

Over time, I would learn to recognize that grief is not necessarily an adversary to be avoided, as much as I want to resist it. Grief reminds me that I am alive and actually living life and connects me to those who I care about in a more engaged and meaningful way. Getting through grief helps me to see how deep my capacities are for love, joy, as well as sorrow and pain. I am very thankful for those things, even if it does take heartbreaking life experiences to be reminded of these gifts. Grief never quite goes away and will often show up at the most unexpected times. Certain events can trigger the loss all over again, but over time, I have found that gratitude can partner with grief and the result is bittersweet. Focus and perspective will change. Grief is not denied, rather, it is recognized as a necessary part of life’s losses, but it’s not the main attraction any more. I am so grateful that there is a light within this often challenging, never ending tunnel so I can see the beauty in the ashes along the way. This makes me very thankful. It also keeps me sane, grounded, and hopeful.

I will always want to resist grief when it inevitably arrives after a loss. This initial reaction will never change, but I now realize that I have choices I can make, unlike before. I can take as much time as I need to process what is happening, heal from my wounds, then proceed forward at my own pace. The key is to make sure not to avoid this important process. I know I will sometimes need help during these times, so I will make sure to get the support I need. The deep wounds will very gradually become visible scars and will always remain as reminders of what I have lost. My losses have taught me this fact over and over I again, so I continue to acknowledge and accept this. I also know that holidays, certain songs, smells, or memories will always trigger losses either resolved and unresolved. In time, my threshold and capacity to experience a variety of emotions, instead of deep sadness exclusively, gradually increases and helps me to move forward because I choose to do so, even when my feelings tell me otherwise. There is no right or wrong way to grieve, and certainly no time limit on it. The key is to learn to coexist with grief and still get on with living your life, one precious moment at a time…

In a few days, we will celebrate Thanksgiving together with our families and friends. It is a time to count our many blessings with gratitude, and there is always something to be grateful for…But for many, this holiday season will also be a painful time. Many of us are the walking wounded with recent or past losses of beloved family members, friends, as well as the personal losses of jobs, health , and hope. Life is tough and difficult circumstances can certainly threaten our well being. The holidays tend to magnify our losses more than other times of the year and it can be so hard to bear. May we be sensitive to those around us who may be grieving and need our support at this time, so as to make their burden just a little lighter. May we also have the courage to acknowledge to others when we need help ourselves! Both are important and potentially life changing in terms of how we get through our grief trials. True gratitude comes from helping others and receiving help for ourselves. It is a gift that keeps on giving and keeps us all going!

May your blessings be many and sorrows be few. May you experience transformative healing and hope over time as a byproduct of your grief, for life is still worth living, even when it doesn’t feel that way…May your joy and fond memories be restored to that special place in your heart. ❤️❤️Happy Thanksgiving to you and your loved ones!😘😘🦃🦃

The Birthday Gift

Eighteen years ago, during a hot August night

A Special Angel from Heaven took a very circuitous flight

He arrived in the world after a difficult pregnancy

Enduring many hardships in the womb, but his life was still meant to be, despite being one month early

He was beautiful, our son, so perfect from head to toe!

Our hearts were bursting with love for this little creature who we would come to know!

He is our Beloved, Our Heart, the Ultimate Gift from above

Our Brian was sent from Heaven, the one we have pledged to love

Then the news was revealed that our baby boy had Down syndrome

We felt so sad in that moment and so utterly alone

It was certainly not the news that any parent wants to hear

And so began the flow of inconsolable, copious tears..

The early days were tough as we watched you struggle and endure

Open heart surgery, an orchiopexy, and medically so much more

You were a brave little soldier, taking everything in your stride

And much to our amazement, and with incredible pride

You conquered, you survived, you grew, and you thrived!

Then Autism decided to show up one awful, snowy day

It threatened and it menaced to take our family’s joy away

Heartbroken and hopeless: now what do we do?!

Don’t worry, Mom and Dad, I know this is way too much for you,

But in time, you will see

That autism, like Down syndrome, truly don’t define me

Yes, these disabilities are not what we planned

They are hard and exhausting, and you will often have to take a stand

On my behalf and always advocate for me

But there is also a richness to my life

If you are willing to see..

My potential and the promise

That the best is yet to be!

Walk along with me on this adventurous journey and you will discover the right priorities!

What really matters is not what you own, or what you do

It’s the love that you give to all, that will mean the most to you

It’s the simple things, that mean so much ,

Like holding a hand or a reassuring touch

Or the lengendary bear hugs that I love to give

To you and to others

And for as long as I live, I will love you with my whole heart, for I know no better way

To show God’s pure love, each and every day

I am yours and I love you both with all of my tender heart

And I have always loved you, Mom and Dad, from my very early start!

Dearest Brian, you make us whole!

You are our soul and our heart!

No matter where life takes us, or whatever we do

We are forever a part of you

We wish you, Son, blessings galore

On your 18th birthday and so much more!

So here are our birthday wishes for you, Beloved Brian:

May God bless you richly in all ways, big and small

May you continue to live your very best life

May you always know how much you’re deeply loved and cherished by family and friends

May you continue to try and learn new things, even when it’s hard and doesn’t make sense

May you continue to face your challenges with courage and grace

May you continue to realize your full potential

May you fulfill your earthly mission as God’s Joy Ambassador to those who need His love

We are so proud of you and always will be!

All Our Love,

Mom and Dad 😘😘😘❤️❤️❤️🎉🎉🎉🍰🍰🍰🎁🎁🎁

Fear is just a feeling, but Faith is Everything!

It finally happened. I knew it was just a matter of time, maybe one day in the future, but not now, not today anyway…But today, specifically this morning, things changed… After almost 18 years of being able to manage Brian’s anxiety ( and him) during a doctor’s physical exam, he got the upper hand. Even with the pediatrician’s assistance, it was still impossible to go anywhere near Brian’s nose or throat-a quick peek into each ear was all that the doctor could get. His loud verbal protests, crying, and quick reflexes to avoid physical contact at any cost were powerful, surprising, and heartbreaking. I had always thought and hoped that maybe with time and maturity, Brian would finally, albeit grudgingly, accept a doctor’s exam. I realized today that nothing has really changed over the years; Brian still hates physician exams just as much today as he did when he was little, but of course he was much smaller back then and much easier to manage. Now, Brian is 140 lbs of strong steel and is officially as strong as I am after today’s episode in the doctor’s office. This scares me half to death, especially as I get older, and as he continues to get stronger..

Doctor ceased her exam all together and made her recommendations based on observation and anecdotal information from me. At least she knows Brian’s medical history so well and always listens carefully to what I have to say. She is compassionate and kind to Brian, but in a few years he will age out of her pediatric practice and will need to move on to an adult physician. I shudder to even remotely consider this thought, and come back to the here and now, and how to best manage one medical appointment at a time… At least there is no outward signs of infection or fever. Doctor was very wise to give me a prescription for antibiotics, just in case things go south quickly, this way Brian doesn’t have to return to her office for a follow up visit. I breathed a sigh of relief and Brian made a beeline for the exit like he always does, once the “torture” was finally over.

During the drive home, I was cursing autism and sensory integration disorder for making my son’s life very unmanageable during a basic physical exam. Just like the old days, I continue to wrack my brain to determine if I have possibly missed ANYTHING that would remotely make the experience a little better. Like many other special needs families, we have tried it all: behavior modifications, rewards, repetition, time, a positive attitude, and hope that everything will ultimately be OK. While these strategies certainly do work often, I have concluded that there will always be some scenarios with our kids where nothing is going to make a difference, but acceptance of the situation for what it is, period. That’s really tough… I struggle with this truth big time as Brian’s Mom and his advocate. I am a problem solver by nature, so when there is no solution to an ongoing problem, that is extremely frustrating for me. I have to remind myself that there are multiple fish to fry with Brian and to move on to where I can help my son and change an outcome for the better instead of obsessing about what I really can’t change. You just try to get through whatever it is as best as you can. Not having control over a situation that your child needs help with is the worst feeling for a parent. We want to make things better for our kids when they are struggling and you feel so helpless when you can’t do that. Today was definitely one of those days..

I think what especially frightens me is how strong Brian has really become over this past year. Suddenly, he seems to have bulked up more, and has exerted more strength and endurance than previously. These are the reasons why I try to be physically active, eat well most of the time, etc, in order to be a step ahead of my son. I know deep down that one day I will no longer have the physical strength to help Brian, but I hope and pray that I remain healthy for a long time to come, or at least until we have figured out a transition plan for trusted others to eventually take over those areas of care when Jim and I no longer can.. This is why we have begun our quest and research on Brian’s next phase of life, as a young disabled adult out of special education within 4 years.

It may appear that we have all the time in the world to figure things out, but the reality is, Brian will be done with his education before we know it, so for us, potential planning and exploring has already begun. A major part of this exploration includes who will assist us in caring for Brian as we get older and are no longer able to help as much or at all, along with what he will actually be up to once his formal education is actually over with. What a scary and uncertain time this next chapter is! It is not for the faint hearted, that is for sure, with so many “what if’s?” and unknowns… Contemplating all the potential scenarios is enough to drive yourself crazy, and believe me, I still do that! And we haven’t even completed the legal guardianship process or started social security yet- other very stressful, but necessary components of our children’s journey. The list goes on and on.. We will always need Herculean strength and courage to get through each and every special challenge thrown in our direction until our mission on this earth with our children has been accomplished. It’s a huge assignment for sure! Of course, I wish so much wasn’t expected of us and our kids, life would certainly be so much easier for all concerned..

Yet, I do believe that somehow, someway, everything will eventually fall into place for Brian as it should, even if I don’t like the timing of events , the outcome, and/ or we have to wait longer for answers than we think we should.. My faith and collective life experiences tell me there is much to be hopeful about…God’s perfect timing is often not ours for a reason… He knows what is best for Brian and just asks us to be open to His will and to trust Him. Jim and I have ultimately done these things so many times in the past, when our own attempts were often futile. Ultimately, all things will work together for Brian’s good; they have all of his life so far. There is no reason not to think that this will continue and I chose to believe that, even if I don’t always feel certain.

A good friend once told me that feelings are not facts, rather, they are simply fleeting emotions and an important expression of our humanness, but nothing more. I will take that on faith and continue forward, despite the fear and uncertainty of the future, especially on days like today when despair threatens to engulf me. Fear and Sorrow will be periodic companions on the special needs journey. Unfortunately , there is no way to avoid their company, but they are not permanent guests, even though they would very much like to be… Instead, I try to take Fear and Sorrow at face value, then move on, because inevitably we must for our kids sake and ourselves. I actually appreciate Joy and Peace much more as a result of these inevitable struggles. I may not know what the future holds, but I know who ultimately holds my future, as well as Brian’s, and THAT makes all the difference.❤️❤️❤️❤️

Until next time, thanks for reading! 😊👍🏻

Milestones Are Just Mile Markers

I recently celebrated a major milestone birthday and am still in denial of completing six decades on the planet. Where have the years gone?! I am aging, but my heart is young, at least most of the time. As I reflect on this milestone and many others over the years, I consider myself to be extremely blessed, all things considered. Life has certainly thrown a lot of interesting experiences my way, along with wonderful people and opportunities. Of course there have also been difficult circumstances, painful situations, and numerous mistakes, for to err is to be human. When I think about some of my bad decisions from the past, maturity and time have cultivated humor and wisdom in place of mortification. Sixty years have taught me not to sweat the small stuff quite as much as I used to. I like to look for the good in both people and situations and am often blessed by both. I deliberately choose to spend my time with people who are affirming and in situations that add meaning and value to my life. I had to learn over the years how not to be a “people pleaser”- it was a tough lesson, but I finally got it! As Shakespeare said: “ to thine own self be true” – life is too short not to be!

As I continue to be a work in progress, I am acutely aware that Brian will be reaching a major milestone of his own this August as he turns 18. I still can’t wrap my brain around this fact; my baby-faced, toddler- like son will come of legal age in just a few months. Unlike my annual self-reflection of “how far I’ve come” and “where I’m going”, taking stock of where Brian was, where he is now, and where he is headed, is an entirely different landscape consisting of a mixture of unknowns, some progress, and gaping holes. It’s whimsical, joyful, hopeful, and sad to ponder, so I tend not to dwell too much on the gaping holes, but I am so aware of their reality. I much prefer the whimsy, the progress, and the hope of possibilities; it is where my strength and optimism reside.

Brian’s milestones ( or lack of them) have the potential to uplift or gut me, depending exactly what they are and the kind of day I’m having. Brian’s 18th birthday will be especially poignant and I expect I will be experiencing a whole range of emotions when it occurs. It will certainly be a happy day for many reasons, but also a difficult day, as this particular milestone especially, represents adulthood and what could have been.. It’s a recurring theme that all special families must face with their disabled children, no matter how old they are, and it doesn’t necessarily get easier. In fact, certain milestones today can trigger the same emotions with the same intensity as when our kids were first diagnosed with their disabilities. Our pain, sorrow, and joy are often just below the surface and easily triggered. It’s like a wound that hasn’t quite healed properly, so when the wind blows the wrong way, it really hurts…

One of my special Mom friends shared her “open wound” today regarding her special son with myself and another special Mom. We special parents are part of a fierce tribe that truly understands like no other parents can. While our experiences with our kids may not be identical, many are quite similar, and our reactions identical. I truly felt this Mom’s pain and sorrow and could easily imagine feeling the same if Brian had walked in her son’s shoes. It is moments like these that you wish you had a magic wand to make things all better. You question “why “ and “how”: I have certainly done that on many occasions myself. It’s hard not to be in control. Feeling helpless to make changes that will resolve the troubling issue or feeling trapped sometimes in a situation that you or your child did not ask for, can be quite heartbreaking. You wonder sometimes how exactly will I get out of bed tomorrow and do this all over again? How will my heart bear just one more heartache on behalf of my special child?

There is no question that there will always be a certain level of sadness/ grief on the special needs journey that will be triggered by milestones, frustrations, disappointments, dashed dreams, and even by a lack of sleep. I wish it weren’t so; how much easier it would be to deny that anything is wrong or ignore some of the behaviors/quirks of our special kids that we had hoped would go away or at least improve after several years, but have not. How I wish sometimes for Brian to be more “typical”, especially in the middle of a transition or meltdown. How I would love for him to be more independent with self care and daily living skills. How I wish he could have friends of his own and not rely on Jim and I for his social life. We will do ANYTHING for our son, but it comes at a high price and great sacrifice. We are always willing, but admittedly, our flesh and attitude are sometimes weak. It’s the hand we’ve all been dealt, Brian especially, and we just continue to do the best we can, one day at a time. It has taken me a LONG time to accept this truth, but I am the better for it and so is Brian. What choice do we really have?

It will always take courage to face “the elephant in the room”, no matter what the “challenge(s) du jour” is/are. Coming to that place of acceptance of our children’s challenges for what they are, then choosing to focus on what we can change is vital. I can then appreciate all things, all milestones great and small, that Brian accomplishes, but remember that milestones are just mile markers on the road of life and not the final destination . My mission is to try to make my son happy and to keep him healthy: these things are much more important to me than any of Brian’s accomplishments and will mean most at the end anyway, truth be told.

Prior to this change of perspective, I was consumed for a long time, by an intense grief to the point where I became depressed and unable to see any of the good things that were happening in Brian’s life. The darkness that enveloped me from dawn to dusk was awful. One day, I had to deliberately choose a different way of living before I was mentally and physically destroyed. I asked God for His help and begged for a fresh perspective as well as the ability to rise above the difficult circumstances/challenges of Brian’s multiple disabilities for his sake as his Mom, as well as my own.

The transformation did come, very slowly, but surely, I gained a new way of thinking , and a new way to live, even though Brian’s disabilities and the challenges from them, will never change. There will still be progress and joys in Brian’s life, as well as ours, that are still worth celebrating. There is still hope and purpose for our kids lives, as well as ours, even though these things may not always be apparent and are hard to believe, especially in a desperate moment. Our kids can still live a life with meaning and joy and so can we. If I look back at our collective milestones as a family, I can honestly see evidence of a rich life, with wonderful memories that we created together, in addition to the scary, agonizing times. This is definitely not the type of motherhood experience that I had expected. It often takes Herculean strength and determination to get through many tough days with Brian. And there are definitely days when I question why I became a Mom when things are especially frustrating.

Yet, I can’t imagine not experiencing the gifts that I have had the privilege of receiving from Brian: love, perseverance, kindness, and acceptance. Brian has taught me not to take myself so seriously; he accepts everyone for exactly who they are, including his Mom- lucky me! He loves and lives his life with his entire being. He lives and loves in the moment. He lives and loves every day and everyone in his own way and on his own terms- how many rich, typical people would pay for that kind of peace and joy in their lives! These things are more precious than a mountain of accomplished milestones. Lucky me, indeed!

Until next time, thanks for reading! 😊

K

I was on