[(in)Able is a community group for moms of kids with special needs. We’re a part of a larger group of women in all stages of life over at (in)courage. Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey. You can join us daily HERE.]
Today’s post comes from my lovely co-leader, Kaylee Page. Kaylee (and Dan) have one daughter, Miss Bella, who lives in a world of FPIES, EOE, Delay in Gastric Emptying. Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while sitting through doctors’ appointments.
FATHER, IF YOU ARE WILLING, PLEASE TAKE THIS CUP OF SUFFERING AWAY FROM ME. YET I WANT YOUR WILL TO BE DONE, NOT MINE. Luke 22:42
Jesus knew “the plan”.
He knew it was a’gonna happen.
So…. I wonder if by asking for the suffering to be taken if he was asking for a different plan or if he was just asking for the suffering and emotions that comes with going through the plan to be relieved? Sometimes God graces us with this unbelievable amount of peace and joy (beyond the circumstances) and sometimes, no matter how hard we try, we are left broken, wrestling, anxious, grieving, mourning, confused – the feelings associated with “the plan.”
(Some may argue that the Holy Spirit wasn’t “around yet” to give this peace so I wonder if maybe Jesus’ plea was maybe the first request for the Holy Spirit to come down and be with us through it all in this miraculous, inexpiable way! Maybe?)
It’s amazing to me, how different life can be, from what we dream and plan… hope for… expect. It’s earth-shattering some (even a lot of) days. And so hard to embrace the God’s message of finding joy, accepting that this was just His plans, to “take comfort and rest in Him.”
Is this message for me? What if finding joy was different before becoming a mom? What if joy these days means that the only thing I can do is breath? And that breath, well it’s the only joy I can muster up, but I’ll take it. Today I breathed a breath full of peace (even if just one breathe, so be it, I’ll take it!)
Oh I trust God. I do. No doubt about it. And I get that someday I’ll get a “well done!” But, right now. Today. I’m tired. I’m so excruciatingly and painfully tired. In every way possible — my mind, body and soul is worn out.
As mothers of children with special needs we suffer a great deal – even if we wouldn’t change the story – or maybe we would – either way, we suffer.
I wrestle, struggle and “suffer” — with the fact that caring for my daughter isn’t just a “get through this today and tomorrow will be better” (like a cold or the flu). She may outgrow some of her issues but it will in some way affect her the rest of her life. That thought alone is exhausting! (not to mention how it affects our every day life in every way – we can’t just go out to eat, go on trips without packing every little food item she may need – and OH THE VOMIT. The vomit. It’s all the time. I live in fear of the next episode. A simple cough rears my head – every time.).
To all you (in) able mothers out there with kids with special needs – your child has impacted your life in countless, absolutely countless ways. Take a moment and speak out load those ways! And let me tell you, it is okay, in face you have all the permission in the world to let tears flow as you name those ways.
You. Are. Not. Alone! I’ll admit, it sure feels lonely though. I think meeting other moms who get it is so comforting — but still — there is a void, where you are the only one who knows exactly and completely what it is like to be your child’s mom. You know what every second, every moment, every breath, every appointment, every milestone – every setback, every doctor appointment, therapist and teacher appointment and meeting…
You know your child. And only you know your child like you do. It’s beautiful and a bit overwhelming both at the same time.
Take this cup of suffering? Jesus cried. Give me peace. Give me joy. Guide, help, assist, lead, create in me a steadfast heart despite the fact I am hanging on a cross… OH GOD! Help me. Hear me.
You too? God, take this suffering? Take this fear, this worry, this sorrow. It is different than I planned. But please, guide me, help me, assist me, lead me. Create in me a steadfast heart in all of this. Oh God, my God! Help me. Hear me….Hold me! Because hanging hear, going through this, I need you. I desperately, wholeheartedly, need your strength to press on and through this life. (Amen).
HE TOOK ME HOME WITH HIM FOR A FESTIVE MEAL, BUT HIS EYES FEASTED ON ME! Song of Solomon 2:4 MSG
I was praying for a friend whose precious child has special needs. I asked God what He would want to say to my her. The verse Come to me all who are weary and I will give you rest came to my heart.
Almost comical, no? This would be the verse He gives me. We, mother’s of kid’s with special needs, are tired and need rest — but I’m not sure we always allow ourselves the grace and space – the permission really – to be tired.
But then I also got the phrase Let my face shine upon you. I thought and prayed more about it on my drive into work that day and I got this feeling that God wanted my friend to just basque in His love. Sort of like sunshine warming her face. Eyes closed, face up to the sun. Comfort. And I felt like He wanted her to know that she didn’t and doesn’t have to earn any of this. That he just really deeply desires to give this gift of rest and warmth to her.
Praying for my friend made me realize I needed the same things.
Laid, I think he wants to illuminate us with his love.
Depressed? But not like any sort of depression you’ve felt before.
Tired? In ways you can’t explain.
I get it. The way you feel. I totally get it. Not exactly like you experience it, but I still get it.
The sleeplessness nights.
The paying of bills.
The meetings to inform and educate.
The endless phone calls to schedule the next step.
The obsessive thinking about it all.
The desire to feel alive again – but the awareness you’re too tired to try – thus, you
wonder if you do desire it.
The awkward conversations.
The marriage that often takes a back burner (even though you don’t want it to)
The second look at your reflection and bags under the eyes.
The desire to re-invent yourself.
The wishing it were different, somehow, just different.
The nothingness that exists in this season.
LOOK, I AM DOING A NEW THING – GOD Isaiah 49:10 CEB
I’m confident that He will resurrect himself in us again – even if it’s not for a long time. Not one ounce of our journey and our story will be wasted in his kingdom. No matter how exhausted, worn out and frustrated we are here, I’m confident it equals strength, beauty and character in another world – in his Kingdom, where there will be no weeping or mourning anymore.
Friends! Today, this very moment… May you stop. May you tilt your face to the sky. And may you allow him to permeate every ounce of your being. May his love cover you, coat you, embrace you, penetrate deep into your heart, breathe life into your soul, steady your mind and soothe the stormy waters.
Yes, may his face fully shine upon you today.