This week was originally supposed to be our first week at St. Joseph's. I couldn't stop thinking about that last night on my run. I was so glad that instead of being up there experiencing day one, I was at home with all three of my kiddos. Don't get me wrong - I am so glad we went. I am so thankful that a place like that exists, but I'm also glad to have it behind us. I'm thankful that Owen is rocking out these meals. I'm thankful that we're evaluating and watching and learning how to best meet his needs. I'm thankful that we found an inclusive preschool for the fall that we're excited about; one that will push him with things like transitions and temper and sensory and overall development.
And last night a friend asked if our lives were getting back to normal? And I said yes, but that we still had a lot of appointments and evaluations and biopsies coming up. And then I realized that, duh, this is our normal. Because after evaluations and appointments come therapies, and schools, and IEP's, and meetings with caseworkers, etc.
This normal is not what I was expecting coming into this year. I mean, I know I should be used to it at this point, but it is still very different from what I thought returning from St. Joseph's would be like.
Do I accept it yet? Have I moved from storming to norming?
Not completely, but I think I'm getting closer. I think it takes baby steps and occasionally backward steps followed by a forward leap. I think it's more like a crazy random dance with weird moves and stumbles rather than a steady forward climb. And we all know this white girl can't dance.
But acceptance is coming in doses. I am getting used to lugging food therapy stuff everywhere we go so we can do meals on the road. And yes, we get some weird looks and have even gotten one or two weird comments, but whatevs.
We're rocking it out. We have our arsenal of distraction toys. We have figured out a way to attach the chair to pretty much anything we can find. We even have our own personal cheer for the end of each meal and we're not scared to be loud about it.
Here's Owen rocking out a meal at the pool:
And here's proof that he does in fact eat:
And if you're reading this and happen to be a feeding therapist, I promise I only took the chin support away long enough to take this picture. Then I immediately put the camera away and supported his chin so he could chew correctly. Promise.
So if you ever see us out and about doing some feeding therapy, feel free to come help distract or join in on the cheer. Seriously - it's a gas.
It is a very good thing that none of our lives come with a true picture of what "normal" would be in our past, present, future! I love that you are truly hitting your stride with whatever "normal" will bring to the Fab Fischer Five!
ReplyDeleteThe pics of Owen are wooo-hoooo fun! His smile dazzles me....can't wait to see him soon :)
What a doll, he's getting so big and handsome!!
ReplyDeleteWow, what a journey....and I can say with all my past "medical challenges" those journeys are hard, heart-breaking, even debilitating at times, but prove to be the most character building, family bonding, soul searching, God revealing, and in the end blessed times of my life. That is truly living. That is experiencing God's love, comfort, grace and power. No, that doesn't mean you want more challenges or that Owen's difficulties are themselves blessings, but it shows how God's power can TURN any thing....ANY thing to reflect His glory, power and love. And you...allowing God to reveal his glory in you...you are displaying God's gifts for all to see. You are showing how he has equipped you to be an amazing, hard working, trusting, and yes, funny, Mother in life.
ReplyDeleteThanks Kelly! I needed to hear that. I know He will turn all this for His good, but sometimes it's easy to forget that.
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