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It came home in your folder today, the flyer with the fun graphics from your even more fun teacher touting \u201c100 Day,\u201d where you are supposed to dress up like a centenarian. Within minutes I am rifling through your closet for a button down shirt and a tie, combing your dad\u2019s closet for a suitable hat. You approve your future garb and I put it aside for the next week, moving on to more important tasks like feeding my always-hungry boys, one mildly autistic and one not-so-much, and for a time, the celebration is forgotten.<\/p>\n
Later, as I\u2019m washing my hundredth dish that day, I do the small amount of mental math I\u2019m still capable of doing. Living to one hundred gets you to 2107. Realistically, at that point I will have been gone for more than half your life.<\/p>\n
As I think of how much you still like to snuggle with me it seems impossible that there will come a day I will no longer be with you.<\/p>\n
My goal is to remain alive and cognizant until you\u2019re fifty, a goal which I try to attain by regular check-ups, exercise, and (sort of) limiting that wine intake. My mind stretches out over the next four decades of your life- I hope there is a lovely wife, at least a few of the five kids you\u2019re planning on (remember hon, they\u2019re expensive), friends, a career and independence. If I blur the edges a little I can envision you as a husband, a father, a grandfather. I think how much your boundless enthusiasm for life and your eclectic interests will make you an interesting dad and grandad, how I hope these children I may meet when even walking is a challenge will appreciate you.<\/p>\n
I know I do.<\/p>\n
Of course, I can\u2019t help but let my mind wander to your older brother being a hundred, and since at least on my side of the family our relatives live a ridiculously long time, that goal may be attainable. I\u2019m hoping to make it to fifty with him too, see him settled in a good group home near his sibling, enrolled in a day program he loves, somehow able to get to those therapeutic horseback riding lessons he adores. I envision there will be frequent visits from his mom and dad (if we can still drive), and that in his own way he will one day be independent of me, although never independent of others.<\/p>\n
And that\u2019s where the anxiety creeps back in. I just can\u2019t envision getting him from fifty to death without me.<\/p>\n
I\u2019ve written before about him making it to eighty and me to a hundred and sixteen, holding hands as he takes his last breath and I follow along behind him. Rationally I know this won\u2019t happen (even giving up more wine doesn\u2019t make that attainable), but God, I wish it was.<\/p>\n
I brought him into this world, and with his need for constant care, I wish I could see him out.<\/p>\n
I\u2019m hopeful he\u2019ll have his little brother to look in on him, but I know he\u2019ll be busy with those five kids. They do have a bond between them but I can\u2019t say they\u2019re close anymore. When they were both little we could engage them in games together, but as Zach shed rolling balls back and forth for Star Wars trivia the gap widened, only to be truly breached at bedtime with our communal songs. I am certain my youngest will one day be busy with the trappings of a more \u201cnormal\u201d life, may not even live near his brother.<\/p>\n
It breaks my heart to think that one day you will be surrounded by people who may like you, but don\u2019t love you.<\/p>\n
Even as I pen these words I know for me they\u2019re hypocritical. Although I\u2019m a stay-at-home mom I\u2019ve always been the first to tell friends that day care is not the devil, that there was no difference in the emotional stability of the three hundred kids I taught who\u2019d had outside care or had been home with a parent. Kids need love yes, but maybe they don\u2019t need to be enmeshed in love every single second of their day. Justin will be an adult when he enters a home, will have had decades of love and hugs by the time he moves out. Intellectually, I believe he will be okay.<\/p>\n
But this quest for hundred year old garb has made me wonder about his future.<\/p>\n
Who will take him to the successors of his fancy neurologist to make sure his meds are right?<\/p>\n
Who will remember to spend extra care flossing that gap between the two teeth on the left hand side of his mouth?<\/p>\n
Who will schedule (and dear God, do the prep work) for his colonoscopy?<\/p>\n
Who will cuddle with my seventy-five-year-old and read him an Eric Carle book (I can guarantee he\u2019ll still want that).<\/p>\n
Other than his brother, who will love him?<\/p>\n
How do I exit from his life? Do I spend every last possible minute with him, or fade out slowly as it becomes apparent that my time is drawing near?<\/p>\n
Hell, will I even have a choice?<\/p>\n
When I\u2019m gone, will he miss me, or will the differences in his brain allow a quick fade of attachment?<\/p>\n
Yup, being selfless for a moment here, I\u2019m hoping for the latter.<\/p>\n
Things have improved lately chez McCafferty. After a long bout with extreme OCD my son\u2019s obsessions seem to have been quelled somewhat, giving us a more \u201ctypical\u201d life at home, for which my husband and I are extremely grateful. My youngest is thriving.<\/p>\n
We are a happy family. I am happy.<\/p>\n
But I share with you that for any family looking toward the future with a severely disabled child, there is always that unknown of what\u2019s to come lurking there, obdurate in its tenacity. Even on a good day, and there are many, my concerns for his future are always with me. On most days I\u2019ve shelved this worry for my sanity, but I know it will always be there. It is perhaps the one thing I am certain of with this life.<\/p>\n
And if I make it to one hundred and I still know who I am, I\u2019ll carry it with me too.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n