On the sixth day, the center called.<\/p>\n
I saw the number and immediately assumed something had happened.<\/p>\n
My stomach tightened before I answered.<\/p>\n
\u201cNathan is fine,\u201d the nurse said quickly. \u201cNothing is wrong.\u201d<\/p>\n
I sat down.<\/p>\n
\u201cThen why are you calling?\u201d<\/p>\n
She hesitated.<\/p>\n
\u201cBecause we noticed something we thought you might want to see.\u201d<\/p>\n
That afternoon, Michael and I drove there.<\/p>\n
I expected another discussion about muscle tone or seizures.<\/p>\n
Instead, the physical therapist took us into a small therapy room.<\/p>\n
Nathan was positioned in a supportive chair.<\/p>\n
A tablet had been mounted in front of him.<\/p>\n
On the screen were four large squares with simple pictures.<\/p>\n
\u201cWatch his eyes,\u201d the therapist said.<\/p>\n
She asked Nathan whether he wanted music.<\/p>\n
His eyes moved toward one square.<\/p>\n
A song began playing.<\/p>\n
Then she asked whether he wanted more.<\/p>\n
Again, his gaze shifted.<\/p>\n
The same square.<\/p>\n
My throat tightened.<\/p>\n
\u201cIs that intentional?\u201d<\/p>\n
\u201cWe believe so.\u201d<\/p>\n
Michael stepped closer.<\/p>\n
The therapist changed the screen.<\/p>\n
Two photographs appeared.<\/p>\n
One of Michael.<\/p>\n
One of me.<\/p>\n
\u201cNathan,\u201d she said gently, \u201cwhere\u2019s Mom?\u201d<\/p>\n
His eyes moved.<\/p>\n
Toward my photograph.<\/p>\n
I stopped breathing.<\/p>\n
\u201cAgain,\u201d I whispered.<\/p>\n
She rearranged the pictures.<\/p>\n
\u201cWhere\u2019s Mom?\u201d<\/p>\n
His eyes searched.<\/p>\n
Then settled on me again.<\/p>\n
I covered my mouth.<\/p>\n
For six years, I had looked into my son’s face and believed there was nothing coming back.<\/p>\n
Not because there was nothing there.<\/p>\n
Because I didn’t know how to read him.<\/p>\n
I sat beside him.<\/p>\n
\u201cDo you know me?\u201d<\/p>\n
His eyes moved toward my photograph.<\/p>\n
I cried so hard I had to leave the room.<\/p>\n
Not from happiness alone.<\/p>\n
There was guilt too.<\/p>\n
Enormous, ugly guilt.<\/p>\n
The therapist found me in the hallway.<\/p>\n
\u201cI’ve spent six years thinking I don’t love him,\u201d I told her.<\/p>\n
She didn’t argue with me.<\/p>\n
Instead, she asked, \u201cWhat do you think love is supposed to feel like?\u201d<\/p>\n
I couldn’t answer.<\/p>\n
That evening, we left Nathan at the center.<\/p>\n
That was important.<\/p>\n
I didn’t suddenly decide respite care was wrong because we’d discovered he could communicate.<\/p>\n
I went home.<\/p>\n
I slept.<\/p>\n
The next day, I took Grace shopping.<\/p>\n
On the tenth day, we brought Nathan home.<\/p>\n
Our life didn’t transform.<\/p>\n
He still had seizures.<\/p>\n
His feeding tube still needed care.<\/p>\n
I still became exhausted.<\/p>\n
And sometimes, when I heard him wake at three in the morning, my first feeling wasn’t tenderness.<\/p>\n
It was dread.<\/p>\n
But we began working with an eye-gaze communication system.<\/p>\n
Progress was painfully slow.<\/p>\n
Yes.<\/p>\n
No.<\/p>\n
More.<\/p>\n
Stop.<\/p>\n
Mom.<\/p>\n
Dad.<\/p>\n
Grace.<\/p>\n
One afternoon, Grace sat beside him reading the same dinosaur book she’d loved when she was little.<\/p>\n
\u201cDo you like this one?\u201d she asked.<\/p>\n
Nathan looked toward YES.<\/p>\n
Grace laughed.<\/p>\n
\u201cI told you, Mom. He listens.\u201d<\/p>\n
This time, I laughed too.<\/p>\n
A few months later, Michael and I made another decision.<\/p>\n
Nathan would spend two weekends a month in respite care.<\/p>\n
I expected to feel ashamed.<\/p>\n
Instead, I began to understand that keeping myself permanently exhausted wasn’t improving Nathan’s life.<\/p>\n
Grace got some of her mother back.<\/p>\n
Michael and I occasionally ate dinner without discussing medication.<\/p>\n
And when Nathan came home, I had more patience to give him.<\/p>\n
One night, around 4:00, another seizure began.<\/p>\n
I turned him onto his side and watched the clock.<\/p>\n
When it ended, I cleaned his face and changed his shirt.<\/p>\n
Exactly as I’d done hundreds of times.<\/p>\n
Then his eyes moved toward the communication tablet beside the bed.<\/p>\n
I switched it on.<\/p>\n
He selected two words.<\/p>\n
MOM.<\/p>\n
STAY.<\/p>\n
I sat down.<\/p>\n
\u201cI\u2019m staying.\u201d<\/p>\n
His breathing gradually became quieter.<\/p>\n
I touched his cheek.<\/p>\n
And something happened.<\/p>\n
There was no sudden flood of perfect maternal love.<\/p>\n
No miraculous transformation.<\/p>\n
I was still tired.<\/p>\n
Still frightened of the future.<\/p>\n
Still sometimes angry at the life none of us had chosen.<\/p>\n
But I wanted to remain in that chair.<\/p>\n
Not because a nurse expected me to.<\/p>\n
Not because Michael needed me to.<\/p>\n
Not because good mothers were supposed to sacrifice themselves.<\/p>\n
I simply wanted to be there when Nathan opened his eyes again.<\/p>\n
Maybe that was love.<\/p>\n
Or maybe it was only the beginning of it.<\/p>\n
I no longer needed to name it.<\/p>\n
Years of caregiving had taught me that feelings and actions aren’t always synchronized. Sometimes affection comes easily.<\/p>\n
Sometimes responsibility carries you for a long time before tenderness catches up.<\/p>\n
And sometimes a mother desperately needs ten days away from her child without wanting a life without him.<\/p>\n
The next morning, Grace came downstairs and found me asleep in the chair beside Nathan.<\/p>\n
She covered me with a blanket.<\/p>\n
When I woke, she was making toast.<\/p>\n
\u201cMom?\u201d<\/p>\n
\u201cYeah?\u201d<\/p>\n
\u201cAre you here today?\u201d<\/p>\n
I remembered the question she’d asked at the pizza place.<\/p>\n
This time, I knew my answer.<\/p>\n
\u201cYes.\u201d<\/p>\n
She looked toward her brother.<\/p>\n
\u201cFor both of us?\u201d<\/p>\n
I reached for her hand.<\/p>\n
\u201cFor all three of us.\u201d<\/p>\n
And for the first time, saying it didn’t feel like something a good mother was supposed to say.<\/p>\n
It simply felt true.<\/p>\n","protected":false},"excerpt":{"rendered":"
On the sixth day, the center called. I saw the number and immediately assumed something had happened. My stomach tightened before I answered. \u201cNathan is fine,\u201d the nurse said quickly. \u201cNothing is wrong.\u201d I sat down. \u201cThen why are you calling?\u201d She hesitated. \u201cBecause we noticed something we thought you might want to see.\u201d That […]<\/p>\n","protected":false},"author":1,"featured_media":5183,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-7457","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-interesting"],"_links":{"self":[{"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/posts\/7457","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/tappyli.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=7457"}],"version-history":[{"count":1,"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/posts\/7457\/revisions"}],"predecessor-version":[{"id":7458,"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/posts\/7457\/revisions\/7458"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/tappyli.com\/index.php?rest_route=\/wp\/v2\/media\/5183"}],"wp:attachment":[{"href":"https:\/\/tappyli.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=7457"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/tappyli.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=7457"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/tappyli.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=7457"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}