The public admission of You-Tuber Jesse Ridgway and his wife a few weeks ago in the termination of their pregnancy because their son had Down syndrome has created quite an Internet firestorm and for good reason. It’s repugnant and appalling to imagine that a parent would choose to kill their child in the womb because they have Trisomy 21. Yes, I do take this personally on behalf of my son, Brian, who has Down syndrome and thousands of other individuals like him.

Despite the advances in medicine and progress in learning and thriving, our society is still behind the times as far as educating the public about the possibilities, opportunities and rich lives people with Down syndrome can have. Having a child with Down syndrome doesn’t mean the world is coming to end. Rather , in many ways, a new world is just beginning for the baby and the parents and not all of it is a tragedy. Of course, it is devastating news to hear that your baby has a disability- I certainly felt the same way! But you gradually learn that there is hope, support and resources to be had for your precious child and your family. There is also a love that you will experience, unlike any other, that is pure and beautiful, along with a life that will be rich with highs and lows, victories and defeats, just like any other human life.

There is no question that once upon a time, it was a dire situation to have a disabled child because there was no formal schooling for them, medical care was lacking and worst of all, parents were told there was no hope and that they didn’t have to take their disabled babies home from the hospital after they were born. Instead, these babies would be placed in institutions to be cared for often with minimal staff and often in awful conditions. Many were not aware of the potential of people with Down syndrome, but thanks to persistent parent advocates, more professional experience and improvements in medical treatment/care over time, that all changed.

The quality of life for individuals with Down syndrome has dramatically improved over the past 5 decades. Prior to that, people living with Down syndrome were in a world that for the most part did not accept them or believe that they were capable of learning. As a result, their existence was challenging and without purpose or support. Families back then who fiercely advocated for their children were eventually heard and finally their disabled children were given an opportunity to go to school.

These incredible pioneers paved the way for those of us today who have special needs children. Federal law that mandated special education services for students ages 3-21 was instituted in 1975- only 51 years ago! Thanks to this major milestone, Brian, and other disabled individuals, have been the recipients of an abundance of services, therapies, recreational activities ever since . Adult disabled resources, though not exactly like special education resources, are nevertheless available because of the courage, determination and persistence of those parents and professionals who believed in the potential of disabled individuals.

There is no question that having a child with Down syndrome will entail life long challenges, and will require both personal sacrifices and a tremendous amount of resolve for the journey. I will not sugar coat that part at all, for it is absolutely true. And some people are not able to or don’t want to make this kind of lifetime commitment. But to assume that its better for the baby to end their life because it will be a terrible one given their disability is both wrong and inaccurate. Brian is living proof that a good and healthy life is possible, along with many other individuals who we know that also have Down syndrome. In fact, there are resources, medical care, therapies, etc available to ensure such a good outcome- BUT the parents have to be willing to continually secure and advocate for such services for a lifetime.

There are definitely those parents who would be willing to adopt babies with Down syndrome . I personally know of one Mom who gave up her son with Down syndrome for adoption when Brian was just a little guy and this baby was ultimately adopted by a family who already had adopted another boy with Down syndrome. A good friend I know was on a waitlist to adopt a child with Down syndrome. More recently, another wonderful Mom I met adopted a young man with Down syndrome after his Mom passed away, then went on to have her own son a few years later. There are many more stories of heartwarming adoptions such as these.

We live in a world that often worships perfection and considers any potential differences “less than” and disposable. Eugenics selects “ the most favorable “and gets rid of anyone that deviates from the norm. I find this practice to be not only immoral, but dangerous – where do you really draw the line?…Who’s more favorable to a society- older people or younger people? Blue eyes or brown? Boys or girls? Disabled or typical? Where does the line get drawn? These questions should concern and scare each one of us, for anyone is potentially susceptible over the course of their lifetime..

There are certainly no guarantees with parenting- and that includes having a “ perfect child” to raise. Things can happen during the pregnancy, birth or afterwards that you didn’t expect. Or any number of life circumstances can change your child along the way from who they were or who you thought they would be. Parenting will challenge you at your deepest core, rock your world in ways you never fathomed and provide you with a such a profound ability to love that you couldn’t have imagined. The aforementioned is true whether you have a disabled child or not. Parenting is hard, exhausting , but, oh so worth it and so is your child, no matter who they are…

Thanks for reading, until next time! 😊

I have often heard the quote “God doesn’t give you anything more than you can handle” in the context of the special needs life. I believe it is meant with good intentions in a way to encourage us special parents to “keep on, keeping on”. But I don’t think a special needs parent actually came up with this saying. In fact, I know it wasn’t, because if this person spent 24 hours straight with Brian and I, my guess would be they would say instead “ God help you” “Serenity now!!”, or “Wow, I had no clue!”

As a Christian, God plays a vital role in my life and I do have faith in Him ultimately for His provisions, protection and care of myself and those I love. I know that I must trust God each day for the many things that I can’t control in Brian’s life, as well as my own, and that is sometimes very scary. It is a daily, conscious decision to place my life and that of my son in God’s hands, as I am inclined to want to control everything. It’s really hard not to: there are so many challenges, obstacles and concerns that each one of us will face in this life, but magnify these things a thousand times when you have a disabled child. And, this is for a lifetime, not just a season of life… When I allow this stark fact to really sink in, I can become quite overwhelmed and question how God thinks I can handle this exactly?! Because the reality is, I often have a hard time “ handling” Brian’s needs/ life, especially as time goes on and as I am getting older…

Of course we love our special children with all of our hearts and will do whatever it takes to make their lives comfortable, meaningful, etc. Some days, however, I don’t “handle” all the required details to make that happen so well. It took me a long time to finally admit my perfectionistic tendencies and to confess that I am not always successful with managing Brian needs. I make many mistakes along the way, get very frustrated and wonder sometimes just how I will get through the day, let alone next week! I often lose patience and cry in frustration. Sometimes, I’m just exhausted…

What is the solution? God, how am I going to handle all that Brian’s disabilities entail? Well, in addition to trusting Him, I have had to revamp my way of thinking about things, adjust my expectations of Brian and myself, cut us both a LOT of slack and sometimes, yes, just eat a pint of ice cream in one sitting. I have also had to accept my limitations, humanness and mistakes, knowing that this is part of the human experience. Often, I have to do a “HALT” check: am I Hungry, Angry, Lonely or Tired? Sometimes, I’m all 4 at once!! When that happens, it’s my red alert to pause, take deep breaths, eat a good meal, go for a walk and take a nap. I used to think these things were luxuries- now I know they are necessities, otherwise I can’t handle anything long term.

If I am going to handle Brian’s daily life for a lifetime then I MUST make an effort to do the aforementioned, otherwise I will crash and burn and that is a fact. Maintaining a sense of humor is also critical to my own mental health as a special needs Mom, so I purposely look for it wherever/whenever I can. I am often pleasantly surprised by the funny things people say or by what I read and it has helped me to cope with stress much better. A good friend always reminds me that “ this too shall pass”, whatever the “problem du jour” is. Nothing good or bad lasts forever- perspective can definitely be a powerful thing….

I miss my autonomy and mourn the dreams for Brian that I thought would come to fruition. I have to “dream new dreams” for him, which is not easy. These things are still sometimes painful to accept, even 22+ years later. Our lives have been dramatically effected by disabilities and I still become occasionally whimsical of what could have been… I guess I’m still grieving…It‘s important for me to acknowledge these truths, learn from them and eventually move forward when I am ready.

I don’t have the answers or a solution as to how to live daily with often more than I can handle as a special needs Mom. However, after many years, I have finally accepted that I am doing the best I can, and to let a lot of stuff go- and that MUST be good enough for me, period! I am still working on that perfectionism, by the way, one day at a time … I believe Brian would concur with this plan if he could say so for his sanity and mine. I can only handle life one day, one moment a time, in the present . Life is just better lived this way…

Until next time, thanks for reading! 😊

Each one of us has a life story that is unique and ours alone. Most likely your story includes trials, tribulations, the mundane, the incredible and everything in between. Peppered throughout all of these experiences may have been great loves in our lives, and profound losses, as well as grief and fear. All of these things are a part of the human experience and have the ability to shape us, strengthen us or destroy us: sometimes all three of these things happen, depending upon our circumstances.

Hopefully, we can learn somehow to continue to live life on its own terms, especially when we experience a major shift in our world as we know it. The passing of a loved one is a tremendous loss, where we, and our lives, are never quite the same afterwards. There are also losses/disappointments, though not as profound, but are nevertheless life-altering. Inevitably we all will have to face the emotional pain of life -changing losses- the question is how? What do we do with the grief and its pesky partner, fear, that often comes to call during these very difficult times?

My Mom’s recent passing brought all of the aforementioned back to my mind, heart and soul. I have learned to let grief have its way with me; to no longer deny it, but to accept it for what it is. Grieving proves that I am living an authentic life, as painful as this particular time is. Grief is the price of love; the stronger the love, the deeper the grief. This is one of those times and the same was true when my Dad passed away almost 12 years ago. I feel so blessed to have had such good parents and know that I will see them again one day in Heaven- this is both my solace and my hope. In the meantime, I miss them greatly..

My first experience with deep grief was after Brian was diagnosed with autism at 2 years old. I had a very delayed “grief reaction” to this diagnosis (more on that later). But before the autism, there was his initial diagnosis of Down syndrome at birth. I already had an idea that this was a strong possibility based on markers during the pregnancy, some of my own reading along the way, and my instincts…

I remember crying a lot several hours later after Brian’s birth. I was definitely grieving, but I was ultimately hopeful that Brian would thrive and live a good life, based on what I knew about his disability and my personal and professional experiences with the disabled -and he has! However, all of my preconceived notions, hopes and dreams went out the window when the neurodevelopmental specialist said that Brian had autism 2 years later. Initially, I felt numb and wasn’t processing fully at the time exactly what the doctor was saying. I was on the outside looking in at my life with total shock and disbelief. I was also scared to death of Brian’s future and what that would look like and still struggle with that to this day..

Despite my fears, there was no time to grieve – Brian’s diagnoses was a call for action- ASAP! Open heart surgery, Early intervention, more ongoing medical challenges, special education, ABA therapy, advocacy, etc. Many special needs parents are beating the same drum, day in, day out, for years on end. Our disabled children’s needs are all encompassing that way, every day, for the rest of their ( and our) lives. Yes, grief and fear would just have to wait, (got to go to that next doctor or therapy appt) but, ultimately, both would have their way with me..

I ignored the grief and fear for a long time. I didn’t want to feel pain and I was afraid I wouldn’t be able to handle what I might discover about myself and my limitations. I wanted to move forward, get on with helping Brian be the best that he could be- that was easier- but so exhausting! I was a caretaker, but forgot to take care of myself in the process.

I didn’t want Brian to miss any opportunities for improvement. Subconsciously, I set expectations and goals for him and myself that were in the long run inflexible and unrealistic. It was sheer madness when I look back on it now and I kept this all going for a long time. I may have looked like I had it all together on the outside, but I was actually dying on the inside..

Eventually, exhaustion got the better of me several months in the post autism diagnosis and that’s when grief arrived in a big way. The therapies, the doctors, special education and behaviorists, and Brian’s sensory overload to everything around him finally broke me one day. Gut wrenching grief that opened my eyes to my denial and anger over Brian’s disabilities, which eventually transformed into bargaining with God out of fear, then ultimately, and very slowly, the acceptance of what I could not change and the courage to change those things that I could by the grace of God. I finally came to the end of myself. The Christian faith that I was raised in had always played an important role in my life. I knew that with God all things are possible, but lost my way for a season. I also knew that I needed to trust Him, despite the grief and in spite of myself. I was finally ready for help…

It continues to be a daily surrender and choice to trust God for all of the details of Brian’s life, especially the parts that I still grieve over. The hopes and dreams that I had for him will not necessarily come to fruition in this life, but I am learning continuously to be flexible and open to all possibilities and miracles…and to have peace with it all, regardless of how things will be. That is important, because the alternative is despair and hopelessness- been there, done that! I am a work in progress, but it is much better than it was once I was ready to surrender and relinquish control of what I could not change.

I know that I don’t walk alone in my struggles as Brian’s Mom and never will, regardless of what happens or how I feel. My Higher Power is always with me.. I believe that God has a plan for each one of us, even when we don’t necessarily understand it and especially when He seems to be so silent- it often is in those particular moments that God is in absolute control, working diligently behind the scenes on our behalf.

God’s timing and ours don’t often align, but there is generally a good reason for that too. Is it easy to trust Him? Definitely not! But His track record in my life is a solid one, based on the strong evidence of His faithfulness, especially during those times in the valley. When I look back at the tapestry of my life with total honesty, it was especially in the most difficult moments that God ultimately provided a way to move forward. It may not have been the way I expected or necessarily wanted, but things ultimately worked out in their own time. This reassurance is the fuel that keeps me going one day, sometimes one moment at a time.

One of my favorite verses in the Bible is from the book of Jeremiah, Chapter 29, verse 11: “ For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. Grief and fear can make you feel hopeless and rudderless. A future without hope and plans will absolutely crush the heart and soul. But God will meet us and walk with us through our grief. I don’t know what the future holds, but I know who holds my future.. God will restore our hope and give us a future even when we don’t feel that this can possibly happen. All He asks is for our willingness- He will do the rest, one day, one moment at a time..

Until next time, thanks for reading! 😊

Being thankful is not something that I do automatically. I have to make a conscious decision, a deliberate choice to be thankful versus ungrateful, especially when things are not going my way or as I had hoped. Often it takes a crisis or a major life change for me to realize what I had and why I need to count my blessings. My natural default setting is to initially look at a glass “half empty” instead of “half full”. Remaining in this mind set for too long does me more harm than good….

This year especially has been chock full of transitions, adjustments and losses that I have not been grateful for. Now I realize why Brian is so resistant to change: the apple doesn’t fall too far from the tree! And my tree was definitely shaken to its core this year, resulting in fear, anxiety and an ungrateful heart. There were definitely changes that I knew were inevitably going to happen, but didn’t want to face: for example, Brian’s graduation from special education and transition to an adult program ( and all that entailed). My Mom’s gradual health decline and ultimate passing in early October. My own emotional and physical struggles of a broken heart and what definitely felt like a broken back. And finally: the relentless/ demanding journey as a special needs parent- the great dichotomy in my life that will always encompass both extreme joys and simultaneous sorrows; the typical bookends with often the mundane in the middle..

I sometimes vascillate between highs and lows, depending upon what is going on in Brian’s life at the time. Unfortunately, being thankful often gets pushed to the sidelines during these times and forgotten in lieu of just getting through the day, something that I find to be more challenging as both Brian and I get older. Life’s tough circumstances can have a way of deflating both your spirit and hope if you allow them to..

Bad days and seasons in life are inevitable for us all, that is a fact and there is no way around that. However, there are choices to be made when life didn’t turn out exactly as we planned. Do we become bitter or better? Victim or Victor? I have definitely been all 4 of these things during different seasons in my life. In retrospect, I can say with great confidence that choosing a victorious and a better version of myself has always resulted in a life with richer meaning, despite the hardships. But it is a daily choice that I must make and it is definitely not easy..

Thanksgiving is a wonderful reminder for me to count my blessings, take stock in what I do have ( instead of what I lack) and to be thankful for all of it . I really felt the need to write down a list of the things that I am truly very thankful for, especially this year, so I just wrote down what came to mind. I was actually amazed how I was able to come up with 50 things to be thankful for- I didn’t think there was so much I could write down, but I am thankful for that ( #51)! Upon further reflection of my list, I realize just how blessed I truly am. To say I am thankful despite the challenges of life, is where I want to be in my heart, mind and spirit. Here are my Top 50 Things I Am Grateful For: ( I challenge you, Dear Reader, to do tbe same, you will be thankful that you did)!

I Am Thankful For….

1. God, My Creator
2. Heaven, My Hope
3. Jim, My Beloved
4. Brian, My Heart
5. My Wonderful Parents
6. My Loyal/Kind Siblings
7. Our Beautiful, Extended Family
8. Our Church Family
9. Other Special Needs Families
10. Girlfriends
11. Different Friends in each season of my life 
12. The ability to travel extensively as a young woman
13. The opportunity to live in Germany for 18 months 
14. The good fortune to work in various careers 
15. Being a wife and Mom
16. Expressing myself in writing 
17. Colon Cancer Survivorship
18. Modern Medicine
19. Medical Community
20. Living in the United States of America
21. Special Education Staff and resources 
22. A Sense of Humor
23. Tears
24. Good Books
25. Chocolate 
26. Coffee!! ( Otherwise there would be a national crisis, lol)
27. Brian’s adult day program
28. Belly Laughs
29. A Roof Over My Heat
30. Food In The Fridge
31. Hair color and lipstick 
32. Comedies, Dramas and Biographies 
33. My Car
34. Getaways
35. The Beach
36. Apple Products
37. The ability to get of bed each morning 
38. Music!!!
39. Forgiveness 
40. Redemption 
41. Hope
42. Life Lessons
43. Faith
44. Learning From My Mistakes
45. Another Chance…
46. Restorative Sleep..
47. Babies
48. Children
49. My Physical Therapist
50. Hiking/Extended Walks Outdoors 

Happy Thanksgiving to you and yours! May your heart be full of thankfulness for each blessing that you possess, not only this Thursday, but every day. God Bless, until next time, thanks for reading! 😊

Life has been extremely surreal since Mom’s passing just a few short weeks ago…I find myself in certain moments still questioning what just happened, as I grapple with the new reality that she is no longer here. My brain is still having difficulty processing right now: so much transpired medically in the final 10 days of Mom’s life that it makes my mind spin: The multiple diagnoses and trying to make sense of it all…The team of physicians and nurses assigned to Mom’s care and the endless questions/ conversations about a best course of action for her treatment each step of the way. …The major decisions that had to be made and the heartache in making each of those decisions- but knowing my siblings and I were honoring Mom’s wishes made this difficult time a little more bearable…

I can’t stress enough the importance of having a power of attorney/ medical directive in place so that your loved ones don’t have to guess or make agonizing decisions on your behalf should you become sick and unable to advocate for yourself. My siblings and I were very grateful Mom had, albeit reluctantly. I finally convinced her about the importance of estate planning in case something were to happen to her back in 2018. Once she met the attorney and had time to think things over, she understood and agreed it was in her best interests to have all of her wishes legally spelled out. We are all so very glad and relieved that she did this.

I knew, of course, that Mom’s passing was inevitable: how could it not be at 94 years old?! Nanny (Mom’s Mom) lived until 96 years old! Those Irish ladies are a strong, tough breed! So, it was no surprise when God called Mom home on October 2nd, but you still don’t expect it to happen… I don’t think anyone really does…We had been concerned about Mom living in her own house (still!) alone, with just an acorn stair lift and medi- life alert for support. Despite our best efforts to persuade Mom to move to assisted living, (especially after touring some amazing facilities), she was not having it, plain and simple.

Mom loved our family home; it held 58 years of memories of sharing a beautiful life with our Dad and raising 4 children. In the end, she simply could not leave it. My siblings and I were always concerned for her safety and felt sad that she chose to live alone. I, personally, had to “let go and let God”- you can’t force anyone to do anything. I had to trust that things would evolve the way they were meant to. My job was to assist whenever possible and leave the rest in God’s hands. In the end, God granted Mom’s prayer to remain in her home, which is what she wanted all along and for which we were all very grateful for.

Another thing that my brother, sister and are extremely grateful for was the hospital personnel assigned to Mom’s care. Every person we encountered during that difficult time was ordained to play a very special role in Mom’s medical management and our emotional health. I didn’t think too much about what I needed during that time and my sibs didn’t either: we were too busy being advocates for Mom. The whole experience reminded me of scenes from a very long movie, complete with a cast of health angels and a medical plot with more twists and turns that would leave the viewer in a state of constant suspense. It was intense and exhausting.

Slowly, deliberately, and consistently I saw the hand of God directing this movie and its ultimate outcome for Mom, while simultaneously providing her adult children with essentials that they needed to get through this ordeal. The nurses provided us with coffee, juice, sandwiches and snacks around the clock. Someone brought up a bunch of free parking stickers so that we never had to pay for parking. Housekeeping provided extra blankets and pillows during the overnight hours for our comfort. The hospice team provided additional nursing services for Mom, a social worker for us, and a chaplain for us all to sustain our physical, emotional and spiritual needs. I don’t think we even knew at the time just how much we needed all of the aforementioned, but these angels most certainly did and we will be forever grateful to them.

Mom wasn’t speaking since her hospital admission and actually spoke her final words two days before she passed. I was speaking to Mom on this particular morning about her beloved family and friends that she was going to see in Heaven. I said that I bet she couldn’t wait to see Dad, to which she replied loud and clear “I can’t wait!”. My brother and I were both startled, amazed and happy to hear Mom speak this final time: she knew where she was going and who she was going to see after 11 long years…

To be honest, the funeral and repast last week were a blur..The many phone calls I made to share the news of Mom’s passing seem like it never happened. I know many extended family and friends have demonstrated incredible love and support during this very sad time, which means so much.. I know that the Funeral Mass last week was more of a celebration of Mom’s wonderful life than a mourning of her death. I know where Mom is and believe that I will see her again. I also know how blessed we were to have Mom with us for so long…

Mom, I know you will always be with me. I heard your voice in my mind this morning as I was drinking my coffee, encouraging me to get on with my day. I called you automatically yesterday and was surprised for a moment when I heard that your phone number has now been disconnected, but we really aren’t: we have had a special connection since you brought me into the world and will continue to have one until Heaven when I see you again.

I feel like an orphan at the moment, even at 64 years old, as strange as that may sound…Dad’s passing in 2014 was also very difficult to process for a while, but somehow, this is harder, more final…Grief doesn’t honor a timeline, so I will need to allow it to have its way with me, as much as I want to avoid it. I know the great price of love is grief. How blessed I was to have the great love and support of a wonderful Mom and true friend for my adult life…Mom, I miss you, but know that you are always with me…I am proud to be a part of your living and loving legacy, until we meet again….Forever grateful to be your daughter, I love you, until we are all together again ..😘😘❤️❤️

Brian will be completing his first 6 weeks in his new adult program shortly- whew, we made it! I honestly wasn’t sure at the beginning what to expect or if he would transition OK. Nineteen years of school is a long time and for everything to suddenly and dramatically change is a lot for anyone, but especially for individuals with special needs. I was anticipating the phone call during this time that would reveal a difficult behavior that couldn’t ultimately be managed or the consensus that “this is not the right program for Brian”, for whatever reasons. Fortunately, that call never came and to say that I am both relieved and elated would be an understatement! I am estatic, grateful, and emotional all the same time. I am also grieving for some reason and still trying to figure out exactly why….

While I certainly expected the happy end result of these past several weeks to be joy and elation, I had a crying jag after I dropped off Brian at his adult program today. It came out of nowhere, triggered by his refusal to get out of the car initially when it was his time to go. Brian goes through this routine of crossing his legs, refusing to budge with a loud and long angry vocalization. The very kind and encouraging staff help Brian to eventually exit the car after several seconds. As I pull away, he has calmed down and all is well. It’s the same scene every morning, just like that movie “Groundhog Day”: you can literally set your watch by what, when, and where is going to happen daily at approximately 7:50am. Brian has been doing this for years, as reported by his bus drivers and teachers, so why would I be triggered to tears today? I think it has something to do with grief, a necessary, but often unwelcome companion, that is a part of life.

For years, I denied my grief over Brian’s life, from his diagnoses and their implications on his life and ours, to behaviors, quirks, and everything in between. Instead, I researched how to help my son in his daily life, which took ( and still does) an incredible amount of time. Diversions such as research, doctor appointments, therapies, dealing with the school district, teachers, insurance companies, recreational activities etc, is enough to fill up anyone’s day and the perfect excuse not to deal with myself and my feelings about things. I could keep running, but ultimately cannot hide. Grief would have its way with me sooner or later.

Of course, I experienced those moments of profound sadness, especially earlier on when Brian was little when life was truly a pressure cooker of stress, unknowns and just sheer exhaustion. I look back now and even amaze myself with what my husband and I got through together with our son. If you had told me before Brian was born not only what the future was going to hold for him and for us, but that we would actually get through what we have so far still intact, I would have told you that you were crazy! There is a reason why we don’t know the future and we really don’t know just what we are capable of when we are presented with incredible challenges. For these things, I am extremely grateful, but of course all of it has came at a very high price, particularly emotionally, physically and mentally.

Getting back to this morning’s grief : I think Brian’s morning protest and refusal to get out of the car this morning was a stark reminder of how many difficult things in Brian’s life will never change and that is sad. There are many more things of course, but this morning’s daily episode was for some reason a trigger for me: it’s the realization of the finality of disability in this lifetime. It further sets the stage for me, where I go to the “ Woulda, Coulda, Shoulda” Realm. I “woulda” thought Brian would have been past this by now. What else “coulda” I’ve done to make things better. I “shoulda” done X, Y, and Z 20 years ago, and on it goes..

Now I know better, and when you know better, you do better. But still, a Mother’s Heart aches for her child of what could, should and would have been…And I need to give myself permission to feel that grief about Brian each time these triggers happen. It honors my feelings and I am able to process them, sometimes I even learn something new about myself. I don’t like grieving, but it’s necessary and ultimately cleansing. If I don’t give grief it’s due, it will remain and effect my life in other unhealthy ways, like over eating, insomnia and avoidance, which still happens sometimes, but not as much as it used to.

I have learned that grief is not linear nor a “one and done”. As long as we are living, we will be grieving, one thing or another. Grief is like a revolving door that will inevitably return my way and hit me in the face if I don’t step in its realm and go wherever it takes me. It is scary sometimes; there have been lots to grieve about Brian over the years and I’m sure there is more to come. However, despite it all, I don’t want grief to immobilize me or prevent me from still living my life: it has come close to that at times, but that has more to do with fear and being out of control. Eventually, these emotions do pass and life can and does go on. The question is how do I want to live? The secret is remembering how far I have come and knowing that God has my back every single step of the way and always will. These truths in turn will determine how I proceed.

My daily living comes with a whole host of choices that begin as soon as my feet touch the floor in the morning, until I go to sleep at night. I choose to acknowledge the good, bad and the ugly of my day, learn what I can from the experiences and ask God to open my heart, mind and spirit to all of it. I am learning especially that the grief I had feared and avoided for so long has helped me to really engage in my own life more fully and authentically when I take risks to face it. It is not easy, but it is definitely worth the risks it asks ot us. I have found the key is to acknowledge grief, feel it, learn from it, but don’t get stuck in it- life is too short for that.

I am a human becoming who also happens to be a special needs Mom who struggles with grief and sadness like many parents I know. We will continue to grieve in different seasons of life with our disabled children. While that is a fact, it is also true that there is a profound richness, meaning and joy to this life that I experience because of Brian. The bitter and the sweet can coexist, hence, a “bittersweet” journey that is often filled with the mundane, the difficult and the unexpected. While this is not the life I would have necessarily chosen, I could not imagine life without my son, despite the intense grief at times and the hardships that come with the special needs life. Brian has brought out the worst and best parts of me, and has taught me the real meaning of love in so many ways. He has shown me the importance of living with intention and facing my grief and fears with grace, the same amazing grace that comes from Heaven. The result has been a joyful life most days, despite the circumstances and because of our courageous son- I’m so glad he is ours and I am so glad I am living an authentic life, albeit imperfect life ! 😘❤️

It’s Brian’s last week of school and the clock is ticking very loudly in these final hours.. 19 years of special education are almost completed…No more school bus, teachers, therapists or classrooms…Child study teams, IEP meetings, and case managers are very soon to become a part of the past….With the graduation ceremony commencing in just a few days, I knew these moments were inevitably going to come “one day” or “some day” in the future….Now that “ some day”‘is actually in 2 days and I am still conflicted about everything, despite the fair warning and in spite of all the signs…

When I reflect upon the past 19 years of Brian’s experiences in special education, I have to say that overall they have been very good ones. However, no school, school district, teacher or parent is perfect, so there have most certainly been moments of frustration and isolation along the way. Banging heads with case managers, bad bus drivers, and observing school staff not understanding your child, (despite many efforts on your part to unravel their mysteries to those who have been assigned to him) are just some examples. The worst one is when staff give up on your child, even though you as a parent offered your unwavering support to assist in whatever way possible to make things better . These particular moments were like daggers to the heart, scarred and ultimately forgiven, but never forgotten. ..Fortunately, this only happened a couple of times over the years, but even one time was one too many….

There were also difficult moments in the early years of Brian’s schooling when I felt totally inadequate and didn’t know exactly how to help my son. No one gives you a manual with directions and I often felt rudderless and isolated. Yet, I was ultimately determined and eventually learned to become my son’s advocate. Lots of research, making mistakes, taking risks, documenting, speaking up and sharing with other special parents encouraged me to advocate. I am proud of how far I have come in this regard: 19 years have been an excellent teacher of what is possible, especially when it is driven by a love for your son that is so fierce…I also use these skills for self-advocacy, as well as advocating for my Mom, and I continue to learn and improve all the time!

Despite the inevitable ups and downs of special education, I am so very grateful for the wonderful school staff we have met over the past 2 decades, especially those who have loved Brian and have helped him to learn many things. Some of these individuals have become life long friends and will always have a special place in our hearts. We will miss everyone more than words can capture or the heart can express. It’s too hard to say goodbye, so I’m not going to do that, rather, I will ponder these blessings instead.. I know Brian feels exactly the same way and would say so if he could. His smile and hugs communicate what you need to know and where you stand with him.

There is no doubt that Brian will feel the loss acutely of no longer seeing his beloved staff in the immediate days to come, but I trust that he will eventually come to accept and love his new adult day program at New Beginnings For Tomorrow (NB4T). Thank you, Team Brian, for your unwavering support all these years and for teaching Brian the skills that he needs to be successful and happy. I believe he is ready for the next major transition in his life, even if I am not.. but eventually, I will be too!

As the final curtain comes down on an amazing era of special education, I want to thank my graduate, Brian, most of all. It is with great pride that I will watch you graduate on Wednesday. You have come so far since those very early days of school, heck, you weren’t even walking back then! It has not been an easy journey- you work very hard to attain every skill learned. I am in awe of your persistence and fortitude, despite the uphill battle many times. I am also humbled by the abundant grace that you give to all, especially to me as your Mom. Brian, you are a superstar, God’s special young man, who I am blessed to call my son. I have learned so much along with you over these past 19 years, and would not have missed any of it for the world! Thank you for teaching me how to be strong when I didn’t think I could be and to have faith when things seemed hopeless at times. Congratulations on a job well done, Brian! Dad and I are so very proud!! Now on to the next chapter….oh, the places you will go! xoxoxo

Only 3 days into a 9 day vacation from school and I am already exhausted from the caretaking of my disabled son. Having a cold definitely doesn’t help either, as this pesky virus can suck all the energy out of you and makes you want to sleep all day…

Unfortunately , sleep will have to wait until bedtime; I am counting down the hours until then.. Today I feel really old and the repetition of the disabled life is getting on my nerves, truth be told. On days off like this it’s an approximately a 15 hour shift that begins around 6:30am until 9:30pm. Every meal and activity of daily living follows a very specific routine in a certain order and with continual prompting and assistance for everything. This is our reality. Every special family I know has their own story: while the diagnoses and activities may differ, the exhaustion, supports required and repetition are often similar and remain the same.

While there is definite progress along the way, (and will most likely continue), Brian will always need lots of help with everything for the rest of his life. This fact is definitely not a surprise, but it’s generally not on my daily radar. I often forget about Brian’s level of need while he is in school or otherwise engaged in other activities. It’s typically during extended days off like this that I am starkly reminded of just how much patience, energy and endurance that I need to have, which is not as much as before. And of course I feel guilty about that.

I know it’s unrealistic to expect myself to have the same drive and energy that I had when Brian and I were both younger. If I were on the outside of my own situation looking in, I would absolutely concur with just how unrealistic it is, especially as my body tells me so in more recent times, Plus the mental energy that is needed . I believe I speak for many special needs parents who are thinking and feeling similar things. The years often take a toll on us and we try our best to forge ahead with courage and strength, for we really don’t have a choice, just like our children. Some days, though, are just really hard…

Giving ourselves much needed grace and compassion in these situations as special needs parents may not come naturally for most of us. It certainly doesn’t for me- I really have to work at both of these things, especially this week when Brian is off school. My pride must be broken and I must acknowledge my limitations as they are and truly accept them- that’s the hard part. I have to constantly remind myself that I am doing the best that I can in a challenging situation, especially when I don’t feel that way.

I am getting better at asking for help or taking breaks when possible. I am learning to be more realistic about my inevitable caretaking limitations in the future. I am currently trying to find additional supports for Brian and not wait until there is a crisis in the future . This is definitely a challenge for many families due to caretaker shortages across the board, but I am keeping the faith..

In the meantime, we do have some home therapy hours after school a few days a week, for which I am very grateful for. I count my blessings most of the time, but on days like today, I give myself a high five just for getting through it! And that has to be enough for today.

This tempest will inevitably pass, as it always does, once Brian and I return to our regular routines next week. In the meantime, I will try to give myself more grace and extend the same compassion to myself (especially this week) that I give my son. I know things can get better and there is always hope, no matter how difficult things are- I have seen this truth revealed time and time again in Brian’s life, as well as my own. God is faithful and more will be revealed….

Thank you for reading – until next time! 😘😘

And a very Blessed Passover and Easter to all!❤️❤️

As February draws to a close, I am reminded that Brian’s final days in special education are going very quickly, whether I want them to or not. On the one hand, I am very excited that Brian will start attending a wonderful adult day program in July. The weight of the world literally fell off my shoulders when I received the acceptance phone call a couple of weeks ago- what a feeling of elation with simultaneous relief! I didn’t realize just how stressed I was really feeling until I hung up the phone and then a flood of emotions hit me like a tidal wave: joy, fear, and profound sadness. It’s been a lot to untangle over the past several days as I try to process why I am still feeling conflicted and what all of this means going forward…

Brian’s life for the past 18 years in special education has been synonymous with living in a cocoon. It’s been predictable and comforting in many ways, with its routines of school, teachers, therapists and the school bus. There have been wonderful school experiences over the years, as well as less than stellar ones. The highs have been higher and the lows have definitely been lower. There are educators, personal aides and therapists who have made an indelible mark on Brian’s progress and in his life and we are eternally grateful for these wonderful individuals. Some have even become life long friends- one of the blessings of having a child with special needs.

Conversely, there have also been professionals who did not understand our son, nor cared to, along with bad bus experiences and years when progress seemed elusive, despite our best efforts. Those times definitely hurt, often leaving unanswered questions, but an inner resolve was ultimately cultivated . We inevitably chose to learn from each negative experience Brian had , seeking ways to make things better, learn from our mistakes, then slowly move forward, once the dust settled. Despite the ups and downs of special education, there has always been a familiarity, a comfort and predictability of the school day, aka, “the cocoon”. In June , Brian, like the graduates before him and the students that will follow, will be leaving the cocoon. He will be transformed into a butterfly after 18 years , using his wings for the first time to fly into the unknown and scary adult disabled world. I don’t like to think about this too much- I want Brian to remain in the cocoon!

Even though I knew this major transition was going to happen “some day”, you never think that “some day” actually will arrive! But here we are on the cusp of “ some day”, the final 70 days of school… Isn’t it funny how we parents can have just as much difficulty with transitions as our kids? And it’s definitely moments like these that remind me just how much our children are like us, rather than not, despite their disabilities. So, what to do? How does a special needs parent navigate this range of emotions that accompany such a major life change? I say with copious amounts of tears, hope and grace- past experience has shown me these things are necessary for a successful transition. No stone can be left unturned during this journey and no emotion can be ignored..

I have been shedding tears already- can you imagine what it will be like on graduation day?! Graduation is certainly a milestone achievement – a happy occasion that celebrates our special children’s successes, but it’s also a stark reminder of what they are about to lose and this cannot be discounted. A loss of the school day routine, the teachers, therapists, aides, school bus personnel, etc. will be difficult.. Life as our kids have known it for so long is about to change and they have no idea what is about to happen, at least my son doesn’t. Many of our special children are so literal, that it’s not until the day they actually go to their adult program for the first time or realize the bus is no longer coming to pick them up that they then realize their world has been turned upside down.

I expect Brian will have major transition challenges this Summer when he starts his new program- it’s inevitable. But I am hopeful that with time, he will eventually settle into his new adult life, despite its unfamiliarity and the things that he will greatly miss from school. With maturity and experience, Brian has demonstrated in the past that when given lots of time and repetition in a new situation, he can be successful, so that is our prayer once again. Hope continues to be one of my motivators for getting up each morning, as it has been since the day Brian was born. Hope for the best this Summer. Hope springs eternal. Hope that everything will ultimately be OK and work out according to exactly how it’s meant to be. And truthfully, it always has for Brian over the years, despite my doubts and fears, and regardless of the circumstances. There is no reason not to continue to have hope, even in this season of uncertainty and in the depths of my emotions that may tell me otherwise.

“Amazing Grace” is a gift that I will need to give Brian upon graduation this June, as well as myself. It’s the favor and mercy that comes from God, but it’s also what we can give to one another, especially during times of trial and transition. I know that I will need a LOT of grace during this time of change and I know Brian will also. This new chapter will indeed be one of trial and error, I’m sure, but I am hopeful that grace will sustain us enough to get us through the difficulties, whatever they may be.

In the meantime, there is also anticipation and excitement in this next chapter of Brian’s life, the flip side of the “tears and fears”. What new things will he learn going forward? Who will he meet? Where will he go? How will his life be further enriched? As I ponder these many things, I realize that there is just as much to look forward to for Brian, as there is to be concerned about: I can’t control how the wind blows, but I can adjust the sails. Oh, the places you will go, my son! And the places you have already been to along your life journey: some destinations you would understandably never choose to visit again, while others you would remain in forever if you could. We don’t know what the future holds, but we know who holds the future…God will make a way, as He has always done in your precious life.. He will continue to be faithful and guide you, Brian, as you charter new waters in July. Dad and I are so proud of you, our Beautiful Boy, oh, the places you will go! 😘😘❤️❤️

Thanksgiving or “Giving Thanks” is one of my favorite holidays, not only for the delectable delights (that I will definitely overindulge in on Thursday!), but it also provides me with an annual opportunity to be retrospective about my blessings and to count each one. However, I am not naturally grateful, in fact, my default is to complain and not consider the gifts that I have. If I’m not careful, I can become very dissatisfied indeed, which is why a yearly reminder is good for me..

Being ungrateful is especially true for me as a special needs parent, because so much of what we do for our disabled children requires great sacrifice, tenacity, courage and strength. It is often a repetitive/ isolating life, exhausting and exasperating, especially as both we and our kids get older, as so much patience is required…. Of course we love our sons and daughters with every fiber of our being – THIS is what keeps us going and why we will do whatever it takes until we take our last breath to ensure our children live their best life, regardless of what it takes..

Am I thankful for all that raising a disabled son entails? Absolutely not- who in their right mind would be? I never imagined that I would still have to help shower my son at 21 years old, cut up his food, assist him with all activities of daily living or be his Social Director. I also didn’t think that I would have to manage every aspect of Brian’s life, or interact with a legion of professionals and volunteers that we heavily rely on to help us to help him, and always will…No, I am not thankful for the effect that disability has had on Brian’s life and ours. I certainly wish it weren’t so. Life would certainly be a lot easier without the numerous challenges that disabilities present- but would life actually be better?…

There is always a flip side to every story: there is no doubt that raising a child with disabilities is not for the faint of heart for the aforementioned reasons just mentioned, BUT, there is also a more meaningful/purposeful life that we have because of Brian. It has taken me time, many ups and downs, and experiences to reach this conclusion, for which I am most thankful. When I reflect on the past 21 years, even in the most difficult of times, there was always SOMETHING to be grateful for, situations and outcomes that have shaped my perspective, given me hope, restored my faith, and, ultimately, instilled in me a thankful heart.

I still have to be very intentional about my thankfulness, but it does get easier with time and practice. My attitude becomes one of gratitude and appreciation for many things- because I know the alternative well enough now to know that there is no peace in a spirit of constant complaining. And thankfulness tends to beget gratitude, which begets genuine joy, – THAT is the miracle I have seen in Brian’s daily life. Despite his significant disabilities, – he can express his joy in the simplest of things that I take for granted: a swimming pool, a favorite song, potato chips, lol. Brian leads his life by faith and complete trust, living truly in the moment and appreciating each one. His life has changed mine profoundly for the better- sometimes in ways that are painful, but ultimately better – and for that I am very thankful. Of course, I have my bad days too, but overall I can see there is actually much I have to be thankful for, even the littlest things, so here is my Top 12 Things I Am Thankful For ( there is no particular order to the list):

1. Coffee- my morning elixir, I can’t imagine starting the day without it! Brenda does run on Dunkin’! ☕️

2. Every New Day that I get to experience..life is short indeed..

3. My husband, Jim- our rock and my best friend

4. My son, Brian- our beloved son, brave warrior who is Love Personified..

5. Our extended family- which is quite large and loving!

6. Beloved friends and acquaintances throughout the seasons of my life- precious memories that I hold in my heart…

7. The special parents I have met because of Brian- we are a strong tribe of friends forged together in love and support!

8. My Heavenly Father, who sustains me, loves me, heals me, and gives me hope every day- my Christian faith is everything to me..

9. All of my life experiences, past, present and future – they have made me the person that I am today.

10. My beloved parents, who taught me how to love myself and others through their selfless examples of love, service and sacrifice.

11. My health- as a cancer survivor, this is especially poignant…

12. The wonderful doctors, teachers, behaviorists, teacher assistants, therapists, volunteers, etc who have taught us how to help Brian live a healthy and purposeful life- we are profoundly thankful for all of you…

May this Thanksgiving be a reminder that there is always something to be thankful for, even in the worst of times…Thank you for reading and being a part of my journey. When I count my blessings, I count you twice! May God bless you and yours with His great abundance in all areas of your life. Happy, Happy Thanksgiving! 😘❤️🦃😊