we are CALLED to more than we CAN do.
I’ve been working on this post for almost a month now, it’s not been ready and there is still a lingering feeling of incompletion, but sometimes it’s good to post from a place of not-quite-ready. This is such a small part of where I am but it’s been a persistent splinter in my finger, causing shooting pains at whatever I have touched.
It’s been an interesting last couple of months. I’ve had plenty of amazing and meaningful moments but there been a cloud overhead that wasn’t there earlier this year. On the more hilarious side of things I never realized how easily distracted that I am until I moved from my private office to the newly-remodeled, open-floor-plan, office cubicle. It’s beautiful, with light colors and clean lines yet I feel like I’m in a petri dish. It’s funny in a “first world problems” kind of way but otherwise not really that funny at all… I know it will pass soon, but it’s this time in this very moment that is hard to focus– I know that life is cyclical, seasonal and issues come and go and soon this silly cubicle will seem normal.
It’s the seasonality of certain pains that catches me sometimes by surprise, like it is with the unpredictable pain of having a special needs child.
Evolution at it’s finest! I subconsciously wore an outfit to match my cubicle to blend in and hide! ;D
I thought I had it figured out- like when you have a newborn and you finally get them on a sleeping schedule and then for a week straight they decide night is day again. I feel like a zombie sometimes, trying to go through the motions of the day yet my mind is so full it feel empty when trying to gather thoughts. I haven’t felt this way in years, probably since the time that the doctors first told us that Bear had William’s Syndrome. Those feelings of loss and devastation have been revisited and the old wound is split wide open leaving me feeling naked and exposed. I want to hide from it all.
Bear (far right with gray glasses) and his Miracle League team!
You see, we’ve had people that were experts and knew what to do to help him every step of the way until now- until the first grade. William’s Syndrome is so diverse and there just isn’t a ton of information out there to help guide a school system (and us). Even within the William’s Syndrome community there isn’t a ton of real help, just lots of support and love. Some of the information out there is helpful but again, not every case is the same nor do the solutions work across the board. We are guessing at best and for my plan-of-action-for-success personalty this wait-and-see plan isn’t working. This isn’t the kind of situation where trusting others to have his best interests in mind is right or realistic. I’m having to become even more of an advocate now for him; a place I’m not entirely comfortable. Yes, you better bet I’ll fight for his best interests but now I’m responsible to push for them to explore ways that might help him learn better and I have no idea what I’m doing. What if I guess wrong and completely derail his learning? I live with this new, oppressive truth –> that again, I’m lacking and not enough.
Please understand, I’m not wanting pity or even sympathy- I know that I’m a great mom and caring and loving is HUGE but there is the unemotional fact that Ben and I have no idea what we are doing and it could negatively affect Bear.
For a few weeks, maybe even months, I’ve felt the need to hide because I’ve been scattered and shattered. I was worried I’d say the wrong thing to the wrong person; the constant place of having my foot in my mouth and replaying conversations at night- hoping I didn’t offend someone with a careless phrase. I’ve felt bound up, tongue tied with the desire to just disappear for awhile under a quilt until I could again be in control.
I’ve been afraid to allow myself to be really seen.
…and I’m weary of it.
We were made to crave genuine authenticity because to hide who we are goes agains our deepest rooted, God-given nature and calling. I’m weary of the fake and the pretense, the effort put forth for perception (that I’ve felt the need to maintain). Give me the sincere ones, the crazy dreamers and broken community any day.
How I deal with the hard part of life is better now than it used to be and that alone has made a huge difference. When I feel my sides expanding like they are going to burst I turn to God and prayer, because it works. Because I feel the burning, adrenaline releasing presence of Him; salve coating like honey on my raw, throbbing soul pain.
I wish I could change the world to see my son’s strengths, to see the precious uniqueness that God has gifted him with. I wish the school system was flexible enough to tailor a program that would focus on his strengths and simply lightly work in the areas that his mind is unlikely to ever comprehend.
The surrendering.
There is no other help, no other reprieve, except when I go to him. There is nothing more I need to do than surrender to him. I’m thankful for how simple it is. I’m thankful for the pain even, as insanely crazy that it sounds as I type those words. I know they are true, even as I’m standing now on the dark edge between light and shadows. There is such deep meaning in grief, trials and suffering if I lean into it, giving up what I wanted, hoped and dreamed. There are no words for the peace I feel when I surrender.
The fullness of Your grace is here with me
The richness of Your beauty’s all I see
The brightness of Your glory has arrived
In Your presence God, I’m completely satisfied
For You I sing I dance
Rejoice in this divine romance
Lift my heart and my hands
To show my love, to show my love
A deep deep flood, an Ocean flows from You
Of deep deep love, yeah it’s filling up the room
Your innocent blood, has washed my guilty life
In Your presence God I’m completely satisfied