Take A Break!!

Brian celebrated his 16th Birthday in Niagara Falls this past Sunday with full fanfare and lots of brownies, just the way he likes them, with lots of whipped cream and hot fudge! Life can be sweet for our beloved son and we are most grateful that he can experience new things , even when it takes him out of his routine and comfort zone. I often say to my husband that we should continue to keep this momentum going while both of us are still mobile and motivated. A part of me is in denial that we are getting older, although my knees remind me every morning that this is indeed the case. Energy levels are less, dinner at 4pm sounds devine, and being referred to as “Mam” is the norm these days. Forever young on the inside, but changing with time on the outside, a part of the life cycle that all of us must face. Denial is just so much easier and a much better destination, at least for a while, don’t you think?

Milestones, like birthdays are also a reminder of how far Brian has come, while simultaneously how little has changed, with a big question mark that is the future. It’s a curious dichotomy of the known and the unknown. The future is scary and hopeful at the same time. It’s a time to also take a break and live in the present moment and to let tomorrow take care of itself. I am still learning how to do that, a work in progress for sure, but I am getting better. Vacation this week has definitely helped me with relaxation, even though there is always a certain level of stress because of Brian’s many needs. No matter where you go or take a break, a respite, a getaway, whether for a day or a week- it is an absolute necessity for special needs families. We may and often have had to sacrifice many other things, but down time is too precious not to take. In fact, it’s most important on my list of priorities, and I will do whatever it takes to make it happen. It’s worth it and you’re worth it, repeat!!

In addition to family vacations, the gift of respite made possible by others is also what special needs parents truly covet: time alone, time with each other, time away, time to sleep, etc… It’s a precious gift that is often hard for many special families to come by and so appreciated when it does happen. We really appreciate those breaks and they provide the impetus for us to keep moving forward, for our journey is a long, exhausting, and often lonely one. So just in case extended family or friends are wondering what to give for the holidays, you have the perfect idea to share with them! 😊👍🏻

It’s hard to believe that Summer 2019 is almost over, just like that! I am grateful to have experienced its warmth and light nights . I love the light, breezes, and vibrant colors. I wish to bottle these things for a bitter cold day in February when they will come in very handy. I love this moment in time as I write. I’m so happy to spend a few days at the beach with Jim and Brian before we resume our regular routines. I’m eternally grateful to be colon cancer-free 10 years this month. I pray to continue to have an “attitude of gratitude”, especially when tough times inevitably arrive. I am especially grateful for this vacation because I really needed a break. The The Ocean is the perfect elixir for all that ails you… 🌊 🌊 It’s Brian’s most Happy Place and ours as well!

Until we meet again, thanks for reading! 😊

Milestone Living From A Special Needs Perspective

Our Summer has been an unusually busy one, with family events, camps, vacation, and Summer school for Brian. As always, Summer goes much too quickly and it’s hard to believe that the middle of August is almost here. Today happens to be one of those rare quiet days, with nothing especially pressing. It’s a gorgeous morning and you wish to bottle today’s sunshine for a bleak winter day in February. Before you know it, Winter will inevitably arrive way too soon in all its snowy splendor and freezing temperatures, but until then, there is still more Summer to savor!

Our extended family has been together this Summer for some very joyous occasions including: our great niece’s baptism, our niece’s wedding, our nephew’s white coat ceremony for medical school, our Aunt’s 80th birthday party, a visit with our extended family from Norway, and just around the corner: Brian’s 16th Birthday party with extended family! Plus Niagra Falls and the Jersey Shore towards the end of August. Whew!! A whirlwind of activity, fun, treasured memories, and milestones that will always be fondly remembered

It was very heartwarming to see Brian participate in these special events this Summer in his own unique, yet predictable way. He loved being with family and I notice now that he is more observant of people and places than before. Transitions to new environments and meeting new people still take time, but once Brian settles in, he is usually fine, yet we always have snacks, headphones, an iPod and iPad for backup, just in case. So far, so good! This is probably the hugest social milestone for Brian, the ability to tolerate so many new environments and to enjoy family members who we don’t see that often. We are so proud of our boy for his resilience and willingness to keep trying, as he does in all things, step by step…

Upon further reflection of these wonderful gatherings, I realize once again that our milestones as a family will always be different than everyone else’s. That’s no huge revelation of course. It is obvious that Brian will not get married or go to college. Nor will he ever drive, hold a full-time job, or live in his own apartment. While Jim and I have certainly accepted these facts as Brian’s reality, I still occasionally experience that longing, that ache for my son, wishing that he could have had those life experiences too. Recent events did trigger those feelings in me, albeit briefly . It’s funny, because I thought I was “past” such feelings. Yet, acceptance and feelings of the heart don’t have an expiration date. I equate recurring grief from long ago to an old wound that never quite heals over and when the wind blows the wrong way, it’s painful. So it was a few of those gusty winds that had blown over my heart during certain moments this Summer. It is just one of those things that comes with the special needs journey that we can’t ignore and have to call it for what it is; a sadness, a disappointment, a longing, a loss. Brian’s story is not tragic by any means, yet, I have had to change my attitude and perspective to what’s really important to him, for him, and for our family. This has taken time-it is really a never-ending work in progress!

Luckily, Brian is not aware of what I think he is missing: it really is MY issue, not his, and for that I am very grateful. Our little family has learned that the “highs are higher” and the ” lows are lower” as far as Brian’s life milestones are concerned. For example, it was a HUGE deal when Brian took his first independent steps at 5 years old. Communicating his wants for the first time via the speech app on the iPad when he was 10 years old warranted a pudding party celebration! Or hearing Brian say, “Mom” and “Dad” consistently this year has been one of our all-time highlights! And there are many other “highs” over the years, many of which I post on Facebook to share with our extended family and friends who don’t see Brian too often. I do love the historical record this venue provides, so we can see how far Brian has come, step by step…These captured moments also give me hope when I get discouraged sometimes during those “low points” as well.

Conversely, it’s hard to see light in the darkness when certain milestones seem so elusive.. Like using the bathroom independently, or showering/getting dressed. I never realized until we had Brian just how many steps each one of us take every day to perform self-help skills and activities of daily living- there are literally thousands of them! Neurotypical people do these things automatically once they are taught. Special children require oodles of repetition, practice, and patience to learn these skills- some of which will be never learned at all due to their complexity for our kids. This is when the ” lowers can be lower”, when these milestones don’t come to fruition, even after many years. This is also where support, sleep, readjusted priorities, and most importantly, a good sense of humor is absolutely ESSENTIAL!

This is not to say that Brian won’t continue to learn and achieve such milestones, for he certainly has and will continue to learn what he is capable of. Learning is life long for the disabled- there is no ceiling or limitations on what can be achieved. It will just take longer and will require patience and support. As far as Brian is concerned, life is long. I have learned more about literally living in the moment and being fully present from my son, than from anyone else, a great personal milestone that still requires patience on my part, but I am getting there too, step by step..

Brian will turn 16 years old in just a few weeks, a fact that my brain cannot fully comprehend! Where did the time go, even those many painful moments over the years, where time froze and I thought would never end? So many milestones achieved, with many more to go, but most importantly, Brian’s life is one that we believe he is happy living, at least most of the time. And that matters more to him than the achievement of a million milestones!

Until we meet again, thanks for reading! 😊