How many more mountains will Jonathon climb?

My thoughts and feelings are unformed and not ready to put into writing, so what you'll read now is me in-process, lots of vulnerability.

I remember clearly a sweltering August 2.5 years ago, Drew and I lying side-by-side on our bamboo mat in the dark, staring at the ceiling, scared and excited about bringing Jonathon home. He's proven irresistibly lovable, and I maintain that this child has more strength of character than anyone I have ever known: brave, kind, considerate, selfless, cooperative, affectionate.

Because he is so good-natured and above all possessing immeasurable inherent value, I have been reluctant to express difficulties on this blog. The difficulties do not reflect on Jonathon as a person, but on the challenges that he faces as a result of brain trauma. 

At times it's been hard and stressful caring for Jonathon's needs and figuring out how to address developmental delays -- that's what blindsided me more than anything. I was and still am unprepared to cope with special needs. As he's grown the disparity between his age and his developmental age grieves me. I didn't expect to sorrow over this, but when I see him struggling with certain tasks, indicating developmental problems, I feel sad. It grieves me to see how his body and mind function differently than a typically-developing child. I don't know how to process through it.

Sometimes I'm frustrated with and directly resentful at him, why can't you do this yet? Which is of course awful and unfair. I haven't figured out how to be the mom who is accepting of the child exactly how he is now, and yet doing everything possible to help him reach his potential. It writing it sounds like, duh, that's do-able, but I've found in real life it's complicated for me.

We miss support and guidance for parents of a special-needs child, and we are dismayed by our community's lack of understanding and nonrecognition of Jonathon's true condition. You know that people with disabilities are marginalized in this society -- there isn't a place for kids with special needs in mainstream schools, these children are abandoned to the welfare center or growing up uneducated at home. (Private preschools exist for the deaf and some other specific disabilities.) 

Our community tends to regard Jonathon one of two ways. First, more rarely, he's labeled as mentally retarded. Second, most common, with big cheesy smiles people downplay and his actual condition and challenges. These folks mean well and are trying to preserve the honor of Jonathon and us his parents, but the attitude invalidates our real-life struggle, "Jonathon's so great! The best! So normal!" Do you have any idea...  Just tonight a friend observing Jonathon stated, "He's completely normal just like other children." I responded, "Jonathon is not mentally retarded but he has developmental delays. He's nearly five years old and fits right into his 2 year-old preschool class. Recognizing his actual condition allows us to best accept, support and help him grow." It makes me feel lonely; we are the only few who see him for who he is, struggle to help him, grapple with the questions and emotions. We're thankful for our close relationship with Auntie Wang; having her intimately involved in our home life has felt supportive as she recognizes that Jon is wonderful but his care isn't simple.

So I am always saying aloud to Drew, a self-reminder:

Jonathon does not need to eat solid foods.

He doesn't need to complete this stupid puzzle.

He doesn't need to answer his name and age correctly every time.

He doesn't need to make progress pronouncing words.

He doesn't need to be able to put his shoes on or take his socks off.

He doesn't need to remember animal names and sounds.

He doesn't need to be potty-trained. 

He doesn't need to understand my question.

He doesn't need to be able to pedal his tricycle.

He doesn't need to swallow this breakfast.

He doesn't need to be able to apply enough pressure to color with crayons.

He doesn't need to sing the verses of this song.

He doesn't need to be competent in washing his hands.

He doesn't need to be able to open the door.

He doesn't need to stop holding hands with strangers on occasion.

He doesn't need to become more and more like a typically-developing kid.

and so forth...

He needs to be loved. He needs to know we accept him now. He needs to feel safe.

When Jonathon first came to us he was more than two years old and still crawling. We hiked up the mountain with him snuggled in the baby carrier. Jonathon now hikes the trails up to the peak, a long, rough walk, holding mom or dad's hand but conquering that mountain hike entirely on his own two feet.

How many more mountains will Jonathon climb?

It doesn't matter. At all.

Still, I believe in him.