After weeks, months even, of rejoicing in milestones and victories, I was reminded.
After months of unneeded therapies (okay, not ALL the therapies), I remembered.
Oh yeah. You have this syndrome.
Not that I forgot, really. Just forgot that there were still things to rule out, stones to turn over. We know it’s a “mild” case, we are so thankful for your healthy heart, your normal IQ, your normal eating and drinking.
And then you go and surprise me, with your mild bilateral conductive hearing loss. And all the mysteries that come with that. Totally did not see that coming. What happened over the last 2 years? Why is the problem in your middle ear bones? Will it get worse? Do you need hearing aids? Who should we go see about this?
And, I don’t know. Again. Some more. There’s a lot of I don’t knows with 22q.
It kinda rattled me, in an all too familiar way. I remember this deflated feeling when I found out you were silently aspirating, and me, the speech-language pathologist, had never put the pieces together.
I remember feeling punched in the stomach like this when we heard the neurologist say that swallowing problems like this may never go away.
I remember needing to sit down hearing the long-awaited news of a diagnosis. I held the phone and vaguely hoped I didn’t pass out alone in the waiting room.
It’s been awhile, but I do remember.
But, I also remember, that in this family, in this faith, in this life, we think in even-ifs, not what-ifs.
“The Lord is righteous in everything He does…” Psalm 145:17. In everything. I am not excluded from that. You, Baby Boy, are not the exception to that rule. Even if hearing loss worsens, He is still Righteous! I don’t understand. But glorifying God means to live my life trusting Him, believing that if I knew all that there was to know about my life, I would choose this, too.
That’s some hard faith, y’all. Meaty, sinewy, substantial, foundational, life-changing faith.
And some days, my faith is more like a processed chicken nugget.
At least, that’s what my behavior says. I panic. I worry and forget to pray. I still have sleep-deprived nights because I can’t get my what-ifs to turn into even-ifs. I still lose a day or two of productivity combing research articles and online medical journals, because me with my control issues sometimes thinks that I can somehow fix it or something.
“You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.”
Psalms 16:11 ESV
He has made known to me my path. It’s clearly written to me (and all us needy souls) in His Word.
I am to follow Him with my life. I am to live in a way that glorifies my Father, my Savior. The details of my path, my life, I am not always privy to, but my I am sure of the direction.
Right on God’s heels.
And He has led us here. To the world of special needs. I mean, hello, He even prepared me for it by directing my career, way back when I took that free online career aptitude test my sophomore year.
#3 Speech-Language Pathologist
(If anyone’s curious, #1 was Musician, but I don’t have the emotional fortitude to deal with huge classes as a band director. I knew that then. #2 was Interior Designer. And honestly, I just didn’t want to have to write an essay about that, so. Here I am today. I wrote that research paper, and I guess I never looked back. You make known to me the path of life…)
I am so thankful for my career and how it prepared me (a little) for the developmental challenges of my boys. And I know for a fact that me having 2 out of 3 kids with special needs has made me better therapist. A better empathizer. A less judgmental person. A more godly woman, with an ever deepening trust.
Can you see God, when you look back? Recounting and remembering and giving thanks for His blessings in our personal lives is a discipline that not only honors Him (Psalm 50:23), but it is good for us too. Keeps Him in our view, right in front. Keeps us on His path and in His presence. In Your presence is fullness of joy…
God, thank you for resolved feeding problems. Thank you for average IQ. Thank you for milestones met. Thank you for spoken words, even mispronounced. Thank you for a working immune system and a healthy heart. Thank you for all the therapists, doctors, nurses… Thank you for career aptitude tests and mind-numbing insurance phone calls and yes, even for processed chicken nuggets, which Noah has suddenly decided he will eat.
God led us here. I needed the reminder. I needed to give thanks, to remember. Loss of hearing is not loss of joy.
I have set the Lord always before me; because He is at my right hand, I shall not be shaken.
Therefore my heart is glad, and my whole being rejoices;
my flesh also dwells secure.
Psalms 16:8-9 ESV