Tomorrow, Noah will be re-evaluated for his need for physical therapy services. This will be his 5th re-evaluation for PT. He’s been in since he was 9 months old. His therapist, his wonderful therapist, who has been with him since the beginning, who first gently recommended that we consider genetic testing, has hinted that he may be ready for discharge.
And I’m a little afraid?
Now, I’m a speech pathologist, and I’ve had patients’ parents before show extreme hesitation, even anger, at proposed dismissal. I always shook my head a little, not understanding why. Now I understand their feelings. I am beginning to.
So we know the diagnosis. We know it’s name. We know how it has affected his development thus far. But we don’t know how it will affect his future. His balance in a year. His mobility when his friends are in soccer. His size in first grade. The straightness of his spine once puberty hits. His grades in 3rd grade, 6th grade, 12th grade. And college? Marriage?
Lots of unknowns. But we do know that early intervention is vital. And that therapies are vital. Therapists are experts in their field. We trust them to know that right now, everything is fine or not fine. I trust Noah’s therapists. All of them.
But they can’t tell the future. I can’t either, darnit.
We know lots but we don’t know lots. We have learned, we’ve Googled, we’ve educated and advocated. But we don’t know. And Noah got blessed with a genetic disorder with at least 200 potentially associated symptoms. 200. So what is all good now could be not good later. Or, what isn’t a problem now, could be a problem later, when more complex tasks and skills are expected of him and development slowed.
Or, he could keep trekking along. Blessing all with that mischievous grin, curly top, and snuggly hugs. Progressing. Walking, running, talking, jumping, talking, questioning, whining, talking, kissy-facing, sweet-talking, hugging, talking… Did I say talking?
(Can I tell you how cool it is that my late talker, speech disordered kid who barely had 2-word sentences at 33 months, Drives. Me. Crazy sometimes with his chatter? He’s figured out how great of a tool talking is to con you out of a piece of candy. Or to distract mom from making him eat his breakfast.)
But services, therapy make us parents feel like we’re doing something. There’s so much we don’t know, we can’t do anything about, but we can feel good about putting him in therapy.
And tomorrow, he may graduate out of it. This feeling is equivalent what I felt on my firstborn’s first day of kindergarten. Sending him on, setting him out, watching what he’ll do with his newfound independence.
Trying not to cry. Trying to sort through the mix of emotions. Trying to tell myself that happiness is the appropriate emotion here, pull yourself together.
We will see. We will trust. We will rejoice, either way. Thank you, Father, for therapists who care and love and have hard conversations with parents and caregivers. Thank you for their patience and their optimism. Thank you for what Noah has learned. Thank you for what he will learn. Thank you for your continued presence, leading, guiding, promises, and hope.
Thank you for Noah.
And, this is hard, thank you for 22q11.2 deletion syndrome. For this version of grace that you are trusting us with. You have used it to make me a better mom, a better speech pathologist. To give me better insight into families with special needs.
When Jesus heard that, He said, “This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it.” (John 11:4 NKJV)
“… To Him be the glory both now and forever.” (II Peter 3:18 NKJV)
Tonight I wait. Tonight I trust. We will see what tomorrow brings. And then I will trust some more.