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 ! 😘❤️