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

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