Clang, clang, clang! It’s one more day of waking up to the unmelodious clatter of train engines chugging along some tracks in Anytown, USA coming from YouTube on the computer downstairs. Every weekday in the hours before school and then after school until bedtime, there is the sound of a perpetual train running through the railroad crossing that is my house. But Diego loves it and he loves it loud. I smile. I get up for one more day.
It’s a normal day in the life of an autistic child and his mother. Okay, that child is mine and that mother is me. Having said that, “normal” in our house is limited to a setting on the dishwasher. A series of one-more-days makes up our everyday life – a Celeste pizza for Diego at every meal. There’s the morning get-ready-for-school routine and the bolus feeding of supplemental formula through Diego’s g-tube morning and night. There are the thousand unsolicited hugs and kisses. The sarcastic remarks I might make that Diego “gets” and maybe even laughs at. There’s all that repetitive perseveration of questions answered over and over with patience – a commodity around here that only living one more day after one more day can procure.
One more day sounds somewhat pessimistic, but I assure you, a pessimist I am not. In a world where every issue is divided in this dualistic reality, some areas of Autismlandia have transcended that dualism of good and bad, right and wrong, normal and abnormal, pessimist and optimist.
Rewind to one day in 2005. One more day is every day – the same day repeating on a loop. Get up and drag feet across floor toward coffee after one more night of no sleep when Diego decides that 2:00 am is party time. Then 3:00 am is playtime. And 4:00 am is screaming in unknown pain because he cannot say the words to express what hurts him. Then one more day, another day, and one more we make it through…
Fast forward to 2008. One more day is one more day that five year-old Diego will not eat enough to grow out of his three year-old clothing. One more day of sentences that ever-so-slowly progress from one word to two to three words. One more day of sleep deprivation, exhaustion, clashing with the school district over an inappropriate kindergarten placement; one more day to worry about the future, what kind of life will my child have, what kind of life will I have?
There is one more day that brings challenge, and eventually one more day brings acceptance, and, depending on what kind of person you are in general, one more day is precious. One more day is a gift.
We have lived through thousands of one more days to get to this day in 2015 when I wake up one more day to the clanking of trains and railroad crossing bells that delight that boy and drive me nuts once I’ve reached my threshold. It’s a fact – one more day can instantly turn into one more marvelous day when Diego reaches another goal or another milestone, like today when he buttoned one button on his shirt by himself in under a minute.
I cherish each and every one more day, especially that precious one more day pre-puberty, pre-middle school, pre-graduation, pre-whatever is to come later in life.
Living for one more day, although it works for us, does not guarantee that it will be a good one; but at some point every day the sun always comes out. It’s one more day I will cry, whether from sadness or overwhelming joy or gratitude. It’s one more day Diego shows me something new that he can do and I am amazed by his progress and admire him even more. It’s one more day I can dream that one day will come when he will be able to live one day on his own independently. Today, though, is one more day I cannot give up; because it’s one more day that Diego needs me to care for him, as only I know how.
There is a saying that describes what it is like for a special needs parent going one more day to one more day, with the uncertainty of those days of the future:
“The prayer of a parent of a child with special needs is that we see our child live a long, happy life … and that we live just one more day.”
Clang, clang, clang! A sigh, a smile, for it’s one more day. Thank goodness for one more day.
By Jean Perry