When Evie was first born and we initially thought she was a typical child, we had very specific goals for her: breathe through her mouth and nose, eat by mouth, hit milestones in a certain order and time frame, learn to talk, etc. When we had her diagnosis confirmed genetically, our goals shifted. Not smaller goals, but bigger and broader goals.
Really, we just started focusing on the REAL goals instead of the paths to those goals. We let go of the normal means and set our sights on the ends. It was actually incredibly freeing and allowed us to see that our goals for both of our girls are exactly the same.
How about some examples?
Breathing by mouth. Is that the end goal? Of course not. Breathing by mouth is simply one path towards getting the oxygen your body needs to function properly. A trach is just a different means towards that end: oxygen. If she needed a ventilator or extra oxygen, we’d do those things, too.
Eating by mouth. Again, end goal? No. The true goal here is nutrition so she can grow and thrive. A gtube is the path she needs right now and that’s FINE! We’re still achieving the exact same goal we have for her sister: for their bodies to get the food they each need.
Hitting developmental milestones at certain ages. What’s the real goal here? Well, each milestone has different end goals, I’d say, but if we need to have a broad goal to group them, how about independence? Does it really matter that Aleyna walked at 10 months and Evie at 29 months? Evie could scoot, then crawl, then walk with a walker, so independent mobility was the overall goal in that area. We wanted to give her whatever assistance she needed to get out and explore her own world. To see something she wanted and be able to move towards it in some fashion.
Talking. Our goal for Evie shifted from talking to the larger goal of communication. We started with sign, dabbled in Cued Speech when we thought her needs required it, found a communication app that works for her, and are now trying to encourage vocalization. Evie uses ALL of these modes to communicate, though. Whatever she needs to tell us her thoughts, we want her to have.
I want to be clear that we haven’t abandoned the more traditional means towards these ends. We’ll still provide therapies and encourage progress however we can, but we’ve been able to let go of doing things the ‘normal’ way. It just doesn’t matter all that much anymore. She’s thriving, she’s happy, she’s HERE. Who cares if she never eats by mouth? If she’s getting the nutrition she needs, what does it matter?
And obviously it matters to a certain extent. There are definite benefits to those normal routes, but are those benefits worth the sacrifice of the the larger goals? Are the benefits of breathing by mouth really worth losing out on the oxygen your body needs? Is eating by mouth really worth not getting proper nutrition? Of course not. But it’s so easy to forget the true goals. It’s so easy to see ‘normality’ as the ultimate goal. But it’s not. It can’t be. Whether your child is typical or has health issues or a syndrome or developmental delays, the means cannot be the end. We need to shift our gaze ever so slightly to those big goals and give our children whatever tools they need to get there.
But let’s remember that even these BIG goals are not the ultimate goal. They all need to work together to do one thing: allow our child to thrive. Evie could breathe by mouth, but that was ALL she could do. She had no energy or focus leftover for anything beyond getting that next breath. She was alive, but she wasn’t thriving. Once she got her trach, she could turn her attention to just being a baby. Surprisingly she felt more like a typical baby after getting her trach and gtube than she had beforehand.
It really has been so freeing to just allow Evie to be who she is and focus on WHAT she needs instead of HOW she needs it. She just gets to be Evie, focusing on her own development in her own timing. If she moves toward the more typical paths to meet those goals in her life, of course we’ll celebrate with her, but if she continues to require varying degrees of assistance, we’ll celebrate that she’s able to live her life fully because of that assistance!