Nothing will send me into a swirl of worry and confusion more than making a change to Nathan’s therapy. I don’t like change. Furthermore, I don’t like change when there’s no guarantee that the change will result in a greater outcome than the one we are currently getting. Anyone else with me?
Nathan is a wild card.
Since he was a baby, I’ve been a mom on a mission trying to figure out how to help Nathan eat by mouth. And by the grace of God, we’ve made some progress. He is taking some purees by mouth if they are just the exact right consistency. He is also able to eat things in one of those mesh baby pouch bags. I love the mesh bags because he can be somewhat independent at the table and he loves a nice crunch to his food.
However, I’ve decided we need to back-off on feeding therapy. Not completely, as we will still do some feeding work with his OT. But the decision to stop working with a feeding specialist, has not come easily. We’ve been doing it intensively for six years, three times per week. The thing that has been sacrificed in it’s place is sound production, vocalization, and language formation.
So we’re going out on a limb and trying a new form of therapy called PROMPT.
It’s a leap of faith.
I am not naive. I’ve been walking this road for awhile. There are no sure outcomes, no promised results. I just need to move forward in the best way I know how.
I’ve been following Emily P. Freeman. She talks and writes a lot about decision making. Her podcast and newly released book, The Next Right Thing have been something God has used to guide me in this process. (If you haven’t checked out her podcast yet, you should. Her voice is so soothing and her message ever helpful.) Anyway, I took her quiz and realized I make my decisions from the heart. It’s not that I don’t use my head and my gut, but they aren’t the primary ways I end up deciding my “next right thing.” I like to gather information and if I’m paying attention my intuition does guide me as well. But what rises to the top for me is that my heart is in line with what I am deciding. It has to feel right. I have to know that what I’m deciding aligns with who I am and who my family is and what we need. It that doesn’t fit, then I don’t move forward. So this process takes me some time. I obviously don’t want to make all my decisions based on how I feel. There is more that goes into it, but suffice it to say that the decision to majorly mix up Nathan’s therapy is very heart-led.
Disclosure: there are no sure outcomes in therapy, or in life.
I don’t know that investing time and money in a new direction is going to result in Nathan talking one day. I don’t know that after giving up our dedicated feeding therapy slots, he will continue to eat well by mouth.
But there is one sure thing available to me. Hope. I have assurance that one day God will heal all of his developmental and medical complications. And if that seems like a pie-in-the-sky idea, I get ya. It feels like that to me too. This journey involves waiting for a long time for all things to be made right. But I want to wait well. I don’t have any rights for my best efforts to result in Nathan becoming better in any way. God does not owe that to me. It’s only by His grace that Nathan makes gains and by His grace that if he doesn’t, I have what I need to care for him and my family.
So I wait expectantly with hope.
Now faith is the assurance of what we hope for and the certainty of what we do not see. This is why the ancients were commended.
By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.
These were all commended for their faith, yet they did not receive what was promised. God had planned something better for us, so that together with us they would be made perfect. Hebrews 11: 39-40
We miss you already Lisa!
And you better bet, I’ll give you an update on how it’s going once we start PROMPT.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!