“Twenty One and Done”- or so I thought, while recently reflecting on Brian’s journey towards adulthood. While in theory this is true, as special education terminates at this point, the reality is a whole new unknown adult world for the disabled , filled with as many scary (however different) things compared to those early years when our kids were just babies. In some ways, it was easier back then. All babies need love, food, medical care and attention in order to thrive and our children are no different ( though Brian and many kids do have many medical issues associated with their disabilities from birth that are challenging ).

As the years pass, the divide between our children and their typical peers becomes more pronounced in all ways imaginable. We worry, we advocate, we persist and ultimately make sure our kids get the therapies, education, and social/recreational opportunities that they need in order to learn, have fun and be included. We parents keep the pace going for quite a long time with all of this until we no longer can…Reasons for this vary: our kids outgrow certain activities or are too old for them. The opportunities themselves no longer exist or we don’t have the same level of energy ourselves that is required to help our kids with school or recreational stuff. Covid certainly didn’t help! I often wish now that I was like the character Benjamin Button who gets younger as time goes on, as Brian gets older and stronger. I am afraid of the day when I can no longer take care of him due to age or my health. I try not to think about this too much, but this reality lurks just below the surface, just enough to remind me that this day will eventually come…

In my darkness moments, especially as I get older, I bargain with God sometimes and ask Him to grant me one of the following scenarios: 1. Please let Brian and I go to Heaven on the same day. 2. Let Brian go to Heaven first so that I don’t have to leave him behind. 3. Whoever goes to Heaven first, the other must follow in 24 hours, (similar to what happened to Debbie Reynolds and Carrie Fisher). I’m glad that God understands my heart and my fears and knows what I’m going to say even before I do. He also knows exactly when the ending to our earthly story will happen. Just like everything else in this life, I must trust Him for all of the details, especially when I feel anxious, particularly right now. I have learned numerous times that life is much more peaceful when I put my fears in what I call a “God Box”, let them go, and entrust the end results to Him. I do gain courage and strength in ways that I never imagined when I am willing to do this, but it doesn’t mean that my feelings disappear. Feelings are not necessarily facts, but they do remind us that we are human. Right now, I am definitely feeling anxiety and uncertainty about Brian’s adult life, and need to hold strong to my faith.

My anxiety is is related to the so many unknown variables, complexities and transitions into the adult disabled world- where will Brian go after graduation? What will he be doing? Will he be happy? These concerns don’t actually surprise me, but the timing does. Major Milestones creep up like a thief in the night; we don’t think they do, especially with so much repetition and the mundane that are hallmarks of the special needs life for years , yet one day, a major transition finally arrives and we can still feel unremarkably unprepared and lost. Brian still has one more year to go until graduation, so fortunately we have some time to get ready for the next Great Adventure. Still, there will be huge losses to grieve as we navigate the unknown: the teachers, therapists, school program, and activities of many years will end . It will be sad to leave the familiar after so long and our kids in particular can struggle greatly with such a radical change…

I know it’s inevitable and that Brian and I will have quite a transition to go through when the time comes . There will be lots of tears, behaviors and frustrations. Brian will need extra time, understanding and grace to adapt to post-graduation life. I will also require the same grace and strength to help my son somehow make sense of his world that no longer exists. It will not be easy. It will take lots of extra patience, time and flexible expectations for both of us. This transition will truly be one day at time, even one hour at a time. I draw comfort in challenges that we have faced in the past and how we were able to work through them by God’s grace- He is always faithful, even when I don’t necessarily understand His timing or the end result, yet things always work out as they are meant to.

In the meantime, I am going to take a deep breath, put one foot in front of the other, take one moment at a time and give myself a lot grace during this difficult transition . Crying has been cathartic, as well as speaking with other Moms whose children already attend adult programs, along with sharing from my heart on this blog. I know brave parents who have walked this journey before me and I take great comfort from their experiences, strength and wisdom. I know there is a plan for Brian and I just need to trust in whatever that will ultimately be. I believe one day I will be able to look back at the tapestry of our lives and so much will make sense at that time, especially during those times in the valley. Transition to adulthood for our disabled children is hard and scary, but we are never alone…😘❤️🙏🏻

Until next time, thanks for reading!😊