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

Special Sisters Of A Different Mister

I often think about one of the precious blessings that has happened as a result of having a disabled son: the friends I have met along the way, specifically, other special needs Moms. Chances are, we would have never met had it not been for our children. Perhaps we don’t even have too much in common, except for the concerns, issues, hopes, and dreams that all of us have for our kids. Yet, ultimately we discover just how much we are the same in our thoughts and feelings versus being different. It makes sense that we will not get along with every parent we meet in the special needs world, after all, we are still individuals with diverse opinions and personalities long before we had our children. For the most part, though, it has been such a gift and a lifesaver to have met such good women who “get”‘this often very difficult, rewarding, and exhausting journey.

While there may be some commonalities that all of our kids share, each one also has very unique attributes of their own, adding to both the mystery and frustration in special parenting. There are concerns about everything from eating to sleeping, education, recreation, and the future when we parents are no longer here. We learn that each of our kids have quirks, repetitive routines, difficult behaviors, and an affinity for the Disney channel even at 17 years old and beyond! No one understands a meltdown of a disabled teen better than another special Mom. She will extend compassion and assure you that she has been there too. Does your special child have an obsession with toddler tunes, Christmas music, and the Chicken Dance (Brian’s new favorite)? Chances are, you will find yourself in good company with other special families who can share similar interests of their children , if not the very same ones! Thank God we don’t walk this eventful and often isolating, special needs life journey alone. It takes time, effort, and opportunity to form relationships with other special Moms, but it’s especially paramount in our situation to find that “safe place to fall” especially when the chips are down and your at the end of your proverbial rope.

Many of us wonder what our kids will do when they are formally done with special education? Where will they go? Where will we live? So many scary questions, with no definitive answers… We will be approaching this juncture with Brian in the near future. We know many special families who are closer to this reality than we are. I learn so much from the wisdom and experience of the parents with older children. No one understands this predicament ( and many others) better than a good special needs mom friend. We share our hopes and fears regarding our adult disabled children’s future. We also share information and ideas to make our kid’s lives better in the here and now while we are looking for long term solutions. A listening ear, sharing ideas, and encouraging one another in similar circumstances goes a long way. Sometimes, this support from a friend can make all the difference between either getting through a very difficult day intact or not.

I marvel at the tenacity and strength of the special Moms I know who “ fight the good fight”’ daily on behalf of their children, in all areas of their lives. I am inspired by them and want to emulate them. These are also the same women who are a big hot mess when their child’s numerous needs and challenges become too overwhelming. I realize that I am in very good company as I often experience the exact same thing with Brian. Depression may also take a strong foothold in special moms lives at times, resulting in multiple dirty dishes in the sink, piles of laundry a mile high, and so much more, BUT, these moms will still make the time to be there for you. Special sisters are just like that! We may not always have the right answers to share with one another to make things better, but just being there and showing support, makes all the difference. I know these things have certainly sustained me for almost 18 years and counting!

Just how those special Moms with older children have shared their tips, strategies, and wisdom with me, I, too, try to “pass the torch” to Moms with younger special children with the knowledge and experience that I’ve accumulated over the years. It’s so important to keep this trend going for the good of all special children who will come after ours and their families. The Internet has also made all the difference with online support groups, where help is just a click away. I can only imagine how very difficult and isolating it must have been for families with disabled children prior to this fabulous technology. We are extremely blessed to live in an age where excellent resources are “virtually” available almost immediately and especially over this past year. Texting has also been a lifesaver for those immediate, “must know” moments between special moms that can offer information, assurance, and peace of mind regarding challenging issues that their children are going through.

We special moms share a unique vocabulary, knowledge, and experience in our world as it pertains to our kids: IEP meetings, ABA therapy, sensory integration disorder, dual diagnosis, child study team, transition, OT/PT/SP therapies, ESY, hippo therapy, antecedent/behavior/ consequence (ABC), transition, CBI, DDD, SSI, and so much more. We have learned a lot over the years together, and often discuss the aforementioned with a variety of emotions, frustrations, and elation when those victorious moments with our kids have happened or not. Most importantly, special moms offer hope to each other, the elixir that is essential to endure this long term marathon with our kids. A reassuring hug goes a long way too!

Sometimes, we special moms may have an opportunity to go back in time together, albeit briefly, and detach from the cares and many responsibilities that accompany the special needs life. We are able to laugh and see the humor in our complicated lives. We can temporarily forget our son or daughter’s behaviors and focus on ourselves and the present moment. Our conversations are sometimes about everything else but special needs, and that can really be refreshing! We encourage one another to take a mental break and practice self care in a variety of ways to sustain us, before we are back in the trenches with our kids. We remind each other to “keep on keeping on”, through our words , actions, and prayers. Sometimes, silence and a reassuring hug is what we need most…

Thank you, Special Sisters, for lighting the way on a journey that can be very dark and dismal at times. I appreciate your support and wisdom and greatly admire what you have done and sacrificed on behalf of your sons and daughters. You are a force to be reckoned with and are some of the strongest people that I have ever known! Your advocacy skills and resourcefulness are legendary and immensely helpful. Thank you for your willingness to share ideas and solutions that have been sometimes been life changing! We are part of a very special sisterhood that will always be essential, no matter where life takes us. I am so very grateful to be a member of this very exclusive club. May we continue to be a blessing to one another in both the good and challenging times that lie ahead for our children.

Until next time, thanks for reading! 😊

50 Reasons To Be Grateful

I don’t feel grateful naturally. As a matter of fact, it takes an intentional effort and deliberate decision on my part to be grateful, especially when I don’t feel like it. This fact has been particularly true since the arrival of Covid 19 last year. There is no doubt that being in lockdown, separation from family and friends, remote learning, etc. for the last several months gives us ample and valid reasons to complain. I have certainly done my share! It’s important to release frustrations and call out things for what they are. However, it’s not good mentally or emotionally to remain “ stuck” in the “complaint department” for too long, lest we lose perspective and forget that there have been at least some things to be grateful for, despite this horrific year. Making a decision to look for the good is an excellent distraction over things that we can’t control. This practice also reduces stress and keeps us physically and mentally healthy. There are too many things in life that can rob us of joy if we allow them to. Life is too short to allow that to happen.

I definitely have to give myself frequent “pep talks” when I start to have “stinking thinking”, which specifically means that when I begin to believe that EVERYTHING is awful, negative, no hope, etc, it’s a warning sign that I need to stop and use HALT ( from the Alanon Support Group): am I Hungry, Angry, Lonely, or Tired? Sometimes I’m all four things! Making sure these basic needs are met is so vital for cultivating a grateful attitude. There is no doubt that raising disabled children can cause HALT quickly and completely, which is why it’s important to check in with ourselves daily and correct any deficiencies. Proper nutrition and rest are not luxuries, rather, they are absolute necessities for our daily functioning, especially because our kids need so much… Once these basic needs have been met, it’s at least feasible to choose gratefulness. I have found making this effort to be grateful throughout the day usually benefits those around me, especially Brian. Somehow, the world is a better place, even though my difficult circumstances may not have changed, but my perspective has- and this makes all the difference!

I had a good sleep last night and ate well, which put me in the right frame of mind to think about what I am truly grateful for in this often messy and unpredictable thing we call “life”. The end result is a compilation of “50 Reasons Why I’m Grateful”, which are listed below. There is no particular order of importance to this list; as a matter of fact, I wrote down exactly what came to mind. I thought of certain things immediately, while others took more time, but are still just as important. It was a valuable exercise in appreciation and gratitude for me, as well as an excellent reminder that perspective in life is everything.. I encourage you to do the same! I believe you will be reminded of your blessings that can carry you through especially trying times. There is also something so powerful about the written word (especially when it’s yours) that can feed the mind and the heart for the better, so let the feast begin!

50 Reasons Why I’m Grateful

1. I can still get up out of bed each day, despite some aches and pains now.

2. My body parts/systems are original and still operational.

3. I am mentally sound, at least most of the time, lol.

4. My faith in God has always and continues to sustain me through all seasons of life.

5. Our extended family, who is loving and supportive

6. Wonderful friends who make life that much sweeter

7. My range of emotions and the freedom to express them

8. The gift and catharsis of writing, especially during low points in my life

9. Music! 🎼 🎶 🎵

10. Travels past and future

11. Hope that springs eternal

12 Life here as we know it is just the “dress rehearsal”- Heaven is the “big show”, my eternal home..

13. Opportunities to give and receive

14. Random acts of kindness

15. The ability to be understood and to understand others

16. The beach at 4pm… 🌊 🌊

17. A large, steaming fresh cup of ☕️

18. A glass of chilled Chardonnay in the evening

19. Dark chocolate 🍫

20. Warm showers

21. Deep hugs

22. Contagious laughter

23. A clever sense of humor

24. I am beyond grateful to be an American! 🇺🇸

25. Lipstick and hair color 💄 👱

26. Forgiveness

27. Learning from mistakes

28. Wisdom

29. A good listener

30. Serendipity

31. My loving husband

32. Our beautiful Brian

33. A shoulder to lean on

34. A hand to hold

35. A listening ear

36. Modern Medicine

37. Being cancer-free for almost 12 years! 🎉🎉

38. The Moderna vaccine

39. A roof over my head

40. Food on the table

41. My church community

42. God’s Word, aka: the Good News!

43. The power of prayer

44. Another day to try again

45. My son’s smile and laughter

46. Values that my parents taught me

47. “Team Brian” – all of the wonderful school staff, home therapists, and volunteers who have helped Brian over the years and continue to do so today- we would be so lost without them!

48. I am grateful for the lessons learned from hard times, for these pearls of wisdom have instilled a much deeper appreciation of the good times when they do return…You can’t fully appreciate the sunshine without going through the rain first. 🌧 ☀️

49. Acts of Courage, despite the fear, risks, and the unknown outcome…

50. God’s loving grace and assurance that He is there, regardless of what is happening, and always will be! ❤️❤️

May your blessings be many and troubles very few! May the good things in your life catapult you to a place of deep appreciation and contentment. May you also find the strength and courage to face the daily hardships that you encounter with a peace that passes all understanding. This life is truly temporal, although it can certainly feel otherwise when you are in the midst of an agonizing trial. Fortunately, bad times don’t last forever, but resilient people do! Always choose to laugh, love, and count your blessings, especially when you don’t feel like it- it’s the best medicine to cure what ails you! Until next time, thanks for reading.

Advocacy

Whether you have a disabled child or not, at some point in life you will either be the spokesperson for yourself and/or on behalf of someone else who requires representation. It behooves us all to be willing, ready, and able at all times to advocate for ourselves and for those who depend on us. In the special needs world, advocating for our children is a lifetime assignment. Advocating is time consuming, often frustrating, as well as unfair in many instances, but in those difficult moments we must remind ourselves that our kids are really depending on us to do the right thing. I think besides loving our children, the way we advocate for them is the most important thing that we will ever do and the results of our efforts will ultimately determine their quality of life. It’s a huge assignment and truly requires taking one day at a time..

I never realized the full extent of how important advocacy would be, not only in Brian’s life, but in my own life as well. Prior to Brian’s birth, I could have never imagined being my own advocate, let alone being one for someone else. Part of an advocate’s skill set requires the ability to research and be well read on the particular subject in question. I find this aspect of advocacy interesting; I have always enjoyed learning and creating outlines/notes or key points on what I’ve learned. This was a process I learned years ago when I wrote term papers or many other writing assignments. This is why I love to write today: I enjoy the written word, whether reading or writing about it. Conversely, oral presentations or speeches scare me half to death!

Even though I am an outgoing person ( at least for the most part), I have never been comfortable with talking in front of a crowd. My speech class in college was one of the most painful experiences I ever went through. Call it stage fright, insecurity, and/or being self conscious, yep, I have all three! For those who know me pretty well, you probably find this surprising, but it’s absolutely true. These feelings of intimidation and lack of self confidence were still a big part me when Brian was first born. There is no question that feeling extremely overwhelmed had a lot to do with it, but I quickly learned that regardless of my position, Brian needed an advocate, as all children do. I truly had so much to learn!

In the very beginning, I took baby steps, reminding myself of each victory, big or small. Interactions with Brian’s doctors were the first opportunities for advocacy on his behalf. I had to learn as much about Down syndrome as possible and compile my questions prior to each pediatrician visit. Luckily, I had prior pharmaceutical sales experience, so I was used to speaking with doctors, but I still needed to learn to assert myself with the doctor, making sure my concerns regarding Brian were addressed to my satisfaction during each visit. You know how doctors can be, especially when they are running behind schedule! Sometimes, Brian and I would leave a visit not entirely satisfied or on a rare occasion, I did not return to a doctor who was dismissive of my concerns or Brian. Nevertheless, I learned to persist on behalf of my son, my first formal lessons in advocacy, with many more to follow. It was uncomfortable at times, often exhausting, but always necessary. Advocacy is still all of these things today, but with much more intensity, repetition, and conflicted feelings that range from elation to extreme frustration, sometimes simultaneously.

Sometimes I wonder just how long I can keep up the pace of managing every aspect of Brian’s life and that scares me to death… Advocating for our special children is indeed a full time job from dawn to dusk. Sometimes, we don’t even know how we get things done on behalf of our kids, as some days are obviously better than others. I try to give myself a LOT of slack, because life is long with our kids and their needs: neither are going anywhere! Each interaction you have with anyone involved in your child’s life typically requires some form of advocacy. The school system, for example, is an especially multi-layered/complex behemoth to tackle. You know exactly what I mean: annual IEP meetings and dealings with our school districts can be quite intimidating and require copious amounts of patience, knowledge, and the ability to advocate for each of your child’s educational needs. Sometimes, we have to pick our battles and ask ourselves: “how important is ——?” I’ve decided to let certain things go over the years, but persist with those resources that I believe Brian needs. Sometimes, a compromise between home and school has been the end result. I have learned how to be negotiate, when to be flexible, and when to stick to my guns. It has taken many years, losses, victories, and determination, for advocacy often requires these things as well.

Advocacy for our kids also occurs with extended family members and friends, volunteers. I am Brian’s voice, his representative, and strongest advocate. Similar to an attorney, I present Brian’s “case” on his behalf to all who interact with him : his needs, how to best help him, etc. I have written down many things in what I call the “Brian Bible”, a comprehensive narrative of anything and everything that you ever wanted to know about Brian. This document has come in especially handy when Brian has gone to overnight camp or for a babysitter and home therapist. It’s important to document relevant information so others know what to do. This becomes especially essential later on when we parents are no longer here or are no longer capable of helping our children. This is now the perfect segue to a very important topic: special needs trusts.

Jim and I decided to create a special needs trust for Brian about 6 years ago. It was the ultimate act of advocacy that we could do on behalf of Brian for his legal protection. We met with a disability attorney and did estate planning, creating our will, medical directives, power of attorney as well. We don’t actually have anything in the special needs trust at the moment, but upon our death, everything that we own will automatically go into the trust for Brian. Perhaps as you are reading this, you are being reminded to get this done for your disabled son or daughter: I urge you to not delay and proceed! You will be so glad that you have a special needs trust in place and the peace of mind that comes with doing so is priceless!

Being Brian’s advocate has taught me how to speak up for myself, Brian, and even my parents, when each of us were going through our own medical challenges. I was especially effective advocating for myself, much to my own surprise, while going through colon cancer treatment, as well as for my Dad when he was diagnosed with lung cancer in early 2014. Although Dad ultimately passed away from this horrible disease a few months later, it was a privilege to speak on his behalf and represent his medical interests during those very difficult meetings with doctors and throughout his chemo treatments. The same has been true for Mom during her many ups and downs since Dad’s passing. I am grateful for my previous advocating experience that has allowed me to help Mom legally, medically, and in the every day things.

I look back on all of these experiences and realize that my advocating abilities began and have been honed over the years because of a precious baby boy who radically changed our lives almost 18 years ago. I am grateful for all of the blessings that have resulted from advocating on Brian’s behalf. I wish it wasn’t such a struggle so often, but I suppose one really does appreciate the sunshine so much more when in the midst of a torrential rain storm..We have advocated enough for our children over the years to know that despite the many difficulties that will inevitably come, the reward in the end is always worth it.

Wishing you strength, hope, and many victories as you advocate for your loved ones, one day at a time… Until next time, thanks for reading! 😊

A

Life’s Burdens Can Be Opportunities For Grace

One of my greatest fears, besides dying before Brian, is becoming a burden to others when my body starts to fail me, leaving me unable to care for Brian. Genetics are definitely on my side though: both my maternal and paternal grandmothers lived to 96 years and 102 years old respectively. So, it’s very possible that I’m going to be around for a while yet… Perhaps modern medicine will advance to the point where I will have bionic body parts with no limitations, for anything is possible.. In the meantime, I realize the importance of self care, so I try to eat well, get enough sleep, and exercise. I do this for myself, as well as for Jim and Brian. No doubt the pandemic has negatively effected all of these routines dramatically this past year, but hopefully all of us can get back to our regular self care routines very soon for our own sakes, as well as for those we love.

Despite our diligence in persevering with self care that will benefit us and our families, there will still come that day when we may need help for ourselves. Of course we are used to providing assistance for our special needs children, in fact, most of us have had teachers, volunteers, home therapists, caretakers, and babysitters on board for an extremely long time. I thank God for each and every one of those individuals past, present, and future, who help us to help Brian, for without their assistance, I know that I would have aged much more rapidly. We will always need to depend upon others to help our sons and daughters, but our constant advocating and intense focus on our children’s needs leaves little room for consideration of our own. The routines and repetition of many mundane days with our kids is often the reality, while our bodies are simultaneously changing, slowing down, and physically hurting in many instances.

I was specifically reminded of aging when my Mom came to stay with us last Spring for several weeks during the coronavirus. Mom is almost 90 years and lives alone in the home where I grew up. She is incredibly remarkable for her age and I often forget that she is a senior citizen and has been for quite a while. My siblings and I were very concerned for Mom’s welfare when the pandemic first happened, plus she had experienced a dehydration episode that required a brief hospital stay, so that was the tipping point that brought her to our house. I learned a lot of things about Mom and myself during her stay with us over several weeks. There were many lessons in patience, compassion, and gratitude for ourselves, each other, and the realization that getting older is really hard… The spirit of self reliance is especially strong in my Mom. She is fiercely independent and doesn’t like to ask for help, nor does she ever want to be a burden to anyone, so it is difficult for her to accept help, even when it was apparent that it was necessary during this particular time.

As you can imagine, there were many days that I struggled with both Mom’s and Brian’s needs last Spring, a classic “sandwich generation” scenario, where one is carrying for both children and aging parents. It was definitely hard and sometimes quite exasperating, especially during a pandemic, but there was also a grace and an honor to this particular life experience. I learned from Mom what a privilege it is to care for the parent who cared so well for me when I was a child. Even in the midst of our struggles, I was ultimately reminded of how very fortunate it was for Mom and I to spend time this particular time together. We created new memories through our conversations over many cups of tea, sharing laughter, tears, and hugs. Mom and I also chatted about many things while doing chores together or cooking dinner. We talked about Mom’s youth, her special relationship with Dad, and stories about relatives in Ireland, as well as my grandparents. I feel very blessed to have spent this time with Mom and never take it for granted.. I especially loved the way Mom and Brian bonded during her time with us; it was another privilege to witness such love between the two of them.

Brian has taught me that he receives and gives grace as his burdens are shared with me and Jim. In other words, in Brian’s weaknesses, he is strong enough and willing to accept help for his challenges. There is no resistance on his part or pride that gets in the way of allowing us to help him; in fact, Brian welcomes sharing his burdens with us! Now of course, this is exhausting and I certainly wish Brian’s burdens weren’t so many for his sake, as well as ours. It is our hope that Brian will continue to acquire more independent skills, but it is a fact that he will always need 24/7 care. This is so scary to consider, especially when I know deep down that I may not always be able to take care of my son. I am blessed to enjoy good health at the moment, but who knows what tomorrow brings? The day will come when our bodies will decline and we may need help for ourselves and with our children.

This is when I really have to trust God for His provision of resources, even when I don’t see exactly how things are actually going to work out. Yet, I have learned, especially by the way Brian lives his life, that impossible situations are exactly God’s specialty when we rely on Him fully for all of our needs. It’s difficult to give up control in a world that covets self reliance and frowns upon dependence. In my personal experience, giving all of my burdens and concerns to God, like Brian, no matter what they are, and trusting Him for the details, is the best thing for my peace of mind. Now this doesn’t mean that I necessarily remain idle; I am still actively doing my part, while simultaneously trusting God for the outcome. Ultimately, He is always faithful..

I pray that I will always have the grace to accept my aging, and be willing to receive help for my burdens should I need it. I pray that I will trust, like Brian, that my needs will be met and that I have the courage to endure my afflictions, whatever they are, as I become older. I also pray that I will always display gratitude and grace towards those who may need to help me, as well as my son. May I have the privilege of growing old with the ones I love and I wish you the very same! God Bless us, Everyone! Until next time, thanks for reading!

Family, Friends, and Faith

Today’s blog will take a different direction than it normally would. Typically, I would write about a special needs topic “du jour”, but I wish to shift the focus to 3 of my favorite things that are relevant, whether you have a special needs child or not. I like to call them My Inspirations or The Gifts that I need in order to live this often very complicated life. I wouldn’t leave home without them, and because, like you, I am often stuck at home right now, I need to find a way to embrace them wholeheartedly. They are: Family, Friends, and Faith- now more than ever, we need these “three amigos”, as each one of us attempts to navigate our difficult daily circumstances. It isn’t easy and many days it’s just plain overwhelming to go one step further. I know that I have felt that way a number of times over this past year.

I think one of the lessons the Covid virus has taught us is just how many things we were not dealing with or facing prior to the pandemic. Back in the good old days, most of us were going about our daily routines, too busy to deal with relationship challenges , certain child issues, or issues within ourselves. Distractions are a powerful thing and give us the false impression that we’ll get to that “outstanding problem” tomorrow because we have too much going on today. Or maybe our problems will resolve themselves. We have all done this; it’s so easy to focus on other things rather than important issues that really need our attention. Let’s face it, it will take work, in some cases emotional work or maybe even physical pain that we don’t want to face. I am guilty as charged in this regard. In our defense, as parents of disabled children, there are certain days when exhaustion prevents us from getting even the very basics done. I have definitely been there too, especially right now, while Brian is mostly home. I have often wondered at the end of the day: how exactly am I going to get out of bed tomorrow morning and do this all over again? I will say some mornings are definitely harder than others and I pray that I can take things, one hour at a time… That has to be enough, at least for now.

Our relationships with our spouses/partners have also been challenged. My husband and I have never spent as much time in the 18+ years we have been together, as we have in the past 11 months. Jim had always worked long hours as long as I have known him, often leaving early in the morning and returning home shortly before Brian’s bedtime to read him stories and put him to bed. That was our normal routine for almost 18 years until March 2020. What an adjustment this has been for the 3 of us! Of course, there have been numerous positives, like more family time, no more long commutes to work, etc, but you can be sure that there has also been more conflict, getting on each other nerves, and the desperate desire for things to return as they were. Regardless of how much you love your spouse and children, each one of us still needs our own personal space, which has been at an absolute premium these past several months. A few blogs back I had mentioned how I had opened my kitchen window to let out a primal scream one day last Spring, when I was really feeling the stress of home demands. I confess this has occurred other times as well, and yes, it felt great! It’s still my “go to therapy when things get really dicey at home.

So, my husband and I now try to resolve issues that should have been addressed pre-covid, but we still get distracted sometimes and place our problems at the bottom of the inbox for “some day”. Right now is that “ some day” and it has not been easy, believe me, but we are trying. By the way, I am convinced more than ever, that men are from Mars and women are from Venus. It’s a wonder how men and women can even communicate and actually be understood by one another sometimes… We are a slow work in progress, even after 18 years. I sure do miss those old carefree days of distraction and denial, when challenges could just be postponed or not acknowledged at all . There is something about being constantly together that changes that, for better and for worse.. Yet, ultimately family ties are the ones that bind the strongest and deserve our undivided attention. Family is everything, especially during a pandemic, but in all seasons of life, regardless of what is happening. Family is our “go to”, our end all, and our home, regardless of where that is,or literally how close together we live.

Absence of connection over this past year has also made the heart grow fonder for our friends, many who we have not seen in the past several months. I’m grateful for the phone and social media, but there is no substitute for being together with those who we are privileged to call our friends or perhaps we may call some special friends our sisters or brothers, because we have forged such close relationships with them. I miss seeing my friends, giving them a big hug upon arrival and departure from our meeting place. I miss the laughter that we share, the listening ear, the latest news, encouraging words, and sage advice. I miss the ritual of sharing a meal with friends in a place of ambiance and warmth. I know that we will be able to create wonderful memories with friends once again in the future and look forward to that very much!

In the meantime, the waiting can be so hard, especially this Winter, when the cold weather, virtual learning, and constant confinement at home exacerbates loneliness. I know many of our kids feel this way too, and they especially, need their friends more this year than ever. Brian with his profound disabilities also understands the value of relationships with others, despite his inability to speak. Brian loves his bus friends, school staff, school friends, home therapists, and volunteers. Brian values the social connection that he has with each individual; they bring him great joy. Each one of us were born to be in relationship with others. Our lives derive more meaning and joy from our friends and it’s this gift of friendship that is often the glue that holds us together when the times are most difficult. I pray it won’t be too long until we are finally reunited with those dear ones who enrich our lives so much. I do believe this WILL happen, we just have to hang in there a little longer..Spring is on the way, and with it, warmer weather, outdoor activities, and times ahead with friends. Keep the faith and keep busy in the meantime, a wise friend once told me. I honestly couldn’t agree more! It is my faith that ultimately keeps me afloat in life’s high tide: when I am broken, I am made whole, when everything is hopeless, I am renewed with hope, and when I am weak, I am given strength to endure.

Speaking of faith- it is a big part of who I am now, but that wasn’t always the case. I was raised as a Catholic, and went through the rituals of Mass and grace before meals, but it wasn’t until Brian was born did I realize just how much I needed God . It’s funny how certain life circumstances can bring you to your knees: I would say that having a disabled child would qualify as one of those instances. My husband’s 3+ year odyssey with unemployment was another, as well as Brian’s additional diagnosis of autism and my colon cancer. It was truly the “trials of Job” for Jim and I during the first 11 years of our marriage where I spent many days asking God “why”? Wasn’t having a disabled child with Down syndrome and autism more than enough? How are we going to keep our home with Jim out of work? Colon cancer- are you kidding me?! Boy, was I angry!

Inevitably, and eventually, I got to the end of myself because there was no where else to go. I finally relinquished control and acknowledged to God that He would have to do something with our broken and what appeared to be hopeless circumstances. It was that very day back in September 2009 that God began to show his faithfulness and love for us. His love and support was ALWAYS there, but God has a way of doing things according to His timetable, not ours, and it’s for our best. Waiting on God’s perfect timing continues to be a challenge for me, though, so I have to often remind myself of His proven track record in my life. True to His nature, God was faithful in His provision of people, resources, love, and support from both our extended family and friends that got us through a heartbreaking, tumultuous time in our lives. We still wear the battle scars from these transformative life experiences, but we are stronger, more compassionate towards others, and have had our Christian faith renewed, none of which would have happened, if we had not gone through the fiery furnace. God already knew we would come out of these harrowing experiences refined like precious gold because of His grace. There is nothing quite like amazing grace, and my life has been forever changed for the good because of it.

One of my favorite Bible verses comes from Jeremiah 29:11: “ For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. Now more than ever, we, our families, our friends, and our nation, need hope for the future, as we continue to muddle our way through a difficult pandemic that has taken hope away from so many. I may not know what the future holds, but I know who holds the future, even during the darkest hours…

May God richly bless you and yours! May your days be filled to the brim with beloved family, close friends, and an unshakable faith in both good and bad times.

Until next time, thanks for reading. 😊

Dream Big And Often!

2020 was definitely the year of dreams unfulfilled and broken dreams. Many of us experienced this first-hand as the Coronavirus sneaked in like a thief in the night, taking beloved family members and friends, destroying businesses, and subjecting our children to a virtual way of learning that is both frustrating and isolating for so many. Perhaps it’s hard to imagine that our dreams will ever come true in the wake of this horrible virus. Life will never be exactly like it was previously, but that may not necessarily be a bad thing, rather it can be an opportunity to take a “self inventory” and finally prioritize once and for all the dreams that we have for ourselves, but have put on the back burner for so long. The past 10 months have certainly put everything on hold, but as we slowly turn a corner now and begin to finally see a beacon of light at the end of this long dark tunnel, this would actually be the perfect time to start realizing those personal dreams. I think it’s safe to say that the one thing the coronavirus has definitely taught us all is that life can suddenly turn on a dime, so make the most of the days that have been given to you, for tomorrow is truly not promised for any of us…

Like any other challenge, realizing your personal dreams won’t be easy. In fact, it will take a certain amount of discipline and determination, just like anything else that is worthwhile. And then there is special needs parenting that is a 24/7 proposition… Let’s face it: we special parents have been and continue to be so focused in making sure that all of our child’s needs have been met for so long, that somewhere along the way we have lost ourselves and our dreams. Part of that is the intense and constant caretaking of our children that really doesn’t leave room or time for much else. Yet, we can’t ignore that fleeting thought, or persistent voice that desires more… Perhaps at some level we feel guilty about actually doing something for ourselves because that takes time away from our kids and what they need, which is always something! When Brian was little I was very guilty of this; I felt I could never do enough for him. If I missed a therapy appointment or an opportunity of any kind that would enhance his life, I would berate myself for not doing such and such and honestly drove myself crazy! It was the classic case of perfectionism gone mad, though I couldn’t see it at the time. Is it any wonder why I was anxious and unsettled so often…While I don’t regret anything I did to help Brian, (actually, I’m glad, because otherwise I would have always wondered “what if ?”) I wish I had been able to relax more and actually enjoy many good moments that happened, regardless of interventions. Of course, hindsight is always 20/20…

The truth is, the best gift we can give to our children is a fulfilled parent, one who can somehow find a balance, even in the midst of an often chaotic life, because we need to, and because we are worth it! This is one of the most important life lessons I have learned as Brian’s Mom. As a parent, it is impossible to run on empty for too long. Sometimes, we don’t have a choice, depending what life throws our way, but we know how we feel when the roof finally crashes on our head because of self-neglect when we choose not to take care of ourselves. It’s not where we really want to be and our children certainly don’t benefit from this either. It’s time to make new plans for ourselves, starting with that first step..

What are your dreams? What have you been postponing for so long? What is really stopping you from taking the first step towards the realization of your heart’s desires? It doesn’t matter how small or large the dream is: the main thing is to get started. One of my fulfilled dreams has been writing this blog. Years ago, long before blogs were in existence, I knew I wanted to write in some capacity, but was unsure of my subject matter. Well, Brian’s arrival into the world became my inspiration! It would take several more years until I actually created the “Marvels and Moxie” special needs blog, but the point is, it finally happened. Self- publishing is another dream that I hope to achieve this year. Exploring Yellowstone National Park one day with Brian and Jim is another. Going back to Europe to see Italy, Spain, Portugal, and Scotland for the first time is another huge dream of mine. I have no idea how or when these things will happen, but I know that they can and am open to the possibilities that will get me there. Learning to play the piano is another; I have started with the very basics and have proven to myself that learning is indeed lifelong… What does all of the aforementioned have in common? A self focus that is fun, entertaining, and a break from the special needs world, a true balm for the soul!

I also have other dreams that are much simpler, yet just as satisfying and more of the self-care type: taking a nap, reading a non-special needs book for entertainment, or meeting a friend for a cup of coffee. Dreams fulfilled of all shapes and sizes make us happy, hopeful, and encouraged. They energize us to persevere in the tougher times and give us something to look forward to. We owe it to ourselves to listen to our inner voice and follow our hearts, for life is short. I can’t believe that I will turn 60 this year- it’s funny how you always feel young at heart, but the truth is, I have lived more than half of my life already. With the remaining days that I do have left on this earth, I would like to make them count with no regrets.

It is time to get started! Grab a piece of paper and a pen. Close your eyes and think about what really makes you happy, things that inspire you and give you joy. As these images appear, write down what you see in your mind’s eye- there are no wrong answers here, only possibilities. Reflect some more and keep writing, then relax when your list is complete. Review your list and see what you have already accomplished or what you you want to do in the future. Make a commitment to yourself that you will achieve all of the things that are on your list, one step at a time, no matter how long it takes… Refer to your list often for encouragement and keep your eye on the prize. Check off your accomplishments as they happen. Add more dreams to your list, delete those that you no longer want, for this is a fluid/ dynamic list. Pat yourself on the back for any steps taken towards the fulfillment of your dreams and reward yourself often. Repeat this entire process as needed!

One of the immediate benefits of the above exercise, is the ability to detach from our son or daughter’s needs, even if it’s just for a little while. We really need to give ourselves a break and permission to pursue our dreams. Over time, we can train our minds and bodies to relax and focus on ourselves, an absolute necessity for our physical and mental health. Many of us hope to outlive our special children; I certainly hope to be a “bionic woman” and be around that long for Brian. Fulfilling my own dreams is one of the ways I can do this, despite the challenges of time and effort, if I make this my priority…

Wishing us all “sweet dreams” of the realized kind, the ones that give us a sense of great purpose and fulfillment. We were created to live a full life, one that has balance and meaning. There is no doubt that our special children’s needs can make these goals elusive, but we can’t ignore our hearts desires, lest we do so at our own peril and theirs as well. Besides, it’s time to finally have some fun for a change; we definitely deserve it after all these months! Happy Parents equals Happy Children, one small step at a time, one day at a time..

Until next time, thanks for reading! 😊

My Grief, My Gain

2021 will be a year of major milestones for Brian. For starters, he will turn 18 this year, and with that, comes the “trifecta”: legal guardianship, social security, and Medicaid. First up is legal guardianship, a process that needs to commence 6-8 months prior to the 18th birthday. I don’t know why, but for some reason I had angst prior to making that intial call last week to get things started. I distracted myself with other stuff on my “to do list” last Monday until the day was over, then woke up with a heavy heart on Tuesday morning, knowing that the inevitable had to be done. So, I took a deep breath and made the phone call, surprising myself with just how thorough and organized I was while providing the necessary information. After the phone call, I thought, “that wasn’t so bad” and patted myself on the back for accomplishing this goal. Then out of nowhere the tears began to flow, steady and many, along with an indescribable weight on my shoulders and a broken heart. The old wound ripped open once again, with searing, inconsolable pain…

Grief is a curious thing; it never quite goes away, despite time, tears, and new seasons in life. Just when you think Grief has been tamed and put in its proper place, it can suddenly reappear out of nowhere, with the same intensity as the first time it arrived. Grief is an inevitable part of the deal as a special needs parent. I wish that wasn’t true, but it is an undeniable fact. Of course everyone will experience grief in their lives at some point, but our grief as special Moms and Dads, as it relates to our children, is directly proportional to the challenges/ losses/ lack of milestones that our kids go through. In our world, there is a sense of loss and grief over many things for our children that they will never be able to do or experience, unlike typical children. I find that there is never a right time for Grief to arrive on the scene, and in fact, it usually shows up at the most in opportune moments. No matter how much you might fight it, suppress it, or deny it, Grief will continue to persist, even when you think it’s been eradicated.

Last Tuesday was one of those days: Grief had me cornered, forcing me to confront my feelings and why I felt such despair. I concluded that I had good reasons to feel such profound sadness; perhaps you can also relate to my situation. Thinking about Brian turning 18 this year automatically brought me back to my 18th birthday. What happened then? I can tell you it was a very symbolic birthday, filled with great anticipation of the future. On that special day, I became a legal adult, I could also vote, and officially drink alcohol- wow, what a trifecta that was! I also had a boyfriend, got my first used car, and had received my acceptance letter for college, another trifecta! Most of us can look back at this time in our lives with great fondness and anticipation of the future- the world was truly our oyster with no limits and endless possibilities. It was these very things that I was reflecting on last week after the guardianship phone call that set the wheels of grief in motion.

Unlike my 18th birthday, I know that Brian’s will be exactly the opposite. He won’t be able to vote, drive, go to college, or have a girlfriend. Brian’s future will be determined by others; he is unable to have a say in what will happen to him. Brian will always depend on others for his future. Legal guardianship ensures that we, as his parents, have the legal right to make decisions for Brian when he becomes an adult because he is unable to. This is not what special parents hope for their children, nor is it natural, but this is often the reality and it is very hard. We have to constantly advocate, adjust, and dream new dreams for our kids. Our love for them drives us to provide a meaningful and fulfilling life that takes an entire village, the strength of Hercules, and numerous resources. Of course, we wouldn’t have it any other way and are determined to help our disabled sons and daughters live their best lives. But such an assignment comes at a huge price with equal amounts of love and grief. It is our reality and legacy, with so much that is expected of both ourselves and our children.

Fortunately, Brian is none the wiser regarding his 18th birthday or the many implications from it. I am extremely grateful that he doesn’t understand what he is missing, for that would bring on another heartache of mass proportions. Brian is a joyful young man for the most part and we have learned over the years what truly makes him happy. My husband and I have been blessed along the way with the goodness and resources of others who love our son, and they have helped us, to help him. We take great comfort in this, and our circuitous special needs journey has certainly been rich and rewarding in many ways as a result. Most importantly, Brian genuinely enjoys his life, including his repetitious routines, food, water, music, and the love of those who care about him. I would like to think that we have played a part in his sweet nature, but I also think this is the personality that God blessed him with, so that he can bless others. Brian brings us great joy, despite the hardships and heartaches. He is OUR heart, which is why it tends to be so fragile and breaks easily whenever major milestones are unfulfilled. This is the price of a deep, abiding love that will always be for our beautiful boy.

As much as I hate to feel Grief , it does remind me that I am alive to life, and my feelings. I think the alternative of not confronting Grief on its terms can be ultimately debilitating. You hear about people who “stuff” their grief instead of dealing with it, so the end result is perpetual anger, a disconnection from life, and even major illnesses. In my personal experience, as much as the grieving process hurts for our children , coming out on the other side of it has its rewards: resilience, perseverance, and love. Just when you thought you had enough of all 3 to last a lifetime, the latest episode teaches you that you have increased each one of these gifts exponentially. Just when you thought you couldn’t love your child anymore than you already do, grief shows you just how big your heart really is. It is these things that enable me to “keep on keeping on” with equal measures of God’s love and grace, for without His help, I can’t go one step further…

This New Year will undoubtedly bring new milestones for our special children, as well as accomplishments, setbacks, heartache, and hope. Our special needs journey guarantees these things and always will. While we won’t like being “refined in the furnace” during those inevitable times of trial and grief that will come our way, may we remember the rewards that WILL await us as a result of our courage and fortitude for facing the grief, even when it feels absolutely horrible. It is ultimately for our good and we WILL get through these hard times, one at a time… I try to remember everything Brian and I have already been through in our lives when trials do come and am reminded that we have an incredible history of being SURVIVORS! We already have a solid background in “survivorship”, so this will always serve us well when the going gets really tough. We, along with our amazing kids, are truly made of the “right stuff”, even when our circumstances would tell us otherwise.

As we take one day at a time in this eventful special needs journey with our sons and daughters, may we also savor those joyful moments with our children that are also inevitable. We have many memories and photos to document these times over the years and more of the same is on the way! While Grief is necessary sometimes, it is NOT our child’s complete story, nor ours for that matter..

Until next time, thanks for reading! 😊