Mom. Writer. Speaker.
Somebody is doing just great and is back to her happy self. As her Grandma says, “The sparkle is back!”
I’ll post an update after Tuesday’s MRI and fill ya’ll in on the details of what’s been going on with our little rock star. I know I’ve been a little vague, but it has been a bit of a roller coaster ride.
But we’re not too worried these days. Right now, we are just appreciating and totally enjoying all the smiles and giggles.
Don’t you just want to snuggle her??!!!
Well, the honeymoon is over. We are right smack dab in the thick of what is Spina Bifida. And, honestly, it is harder than I ever imagined.
I like to call it the land of “grey.” Nothing is black and white in Spina Bifida world. There are no solid answers. There are no promises. But, of course, that means we have Hope.
I know this. I’ve known this since the day we found out about Brooklyn’s condition. Her middle name is Hope, after all. But that was before I could see her little face. That was before I fell totally and completely in love with her. And that was before she was in front of me, crying, crying, crying and I had no answers, just possibilities…
a shunt malfunction?
the wrong pressure setting?
urological issues?
teething?
reflux?
gas?
growth spurt?
I could go on and on and on. And I have. My head is spinning, my heart is aching, and I am physically exhausted. I feel weak. I hate that. I hate that there are no answers. I hate that the only way we may have an answer is waiting. And I really hate that I am using the word “hate.” It is such an ugly word, but right now, it is accurate.
Tomorrow, we might get answers; we might not. I am hoping and praying with all that I am that we get some answers. I can’t nurse one more minute. I need sleep. But WAY more than any of that, I want my happy baby back.
These are my feelings. As ugly as they are, they are accurate. I want to be strong. I want to be “inspiring.” But the pressure needs to be released…my heart needs to feel.
But this waiting, this “grey” I speak of, I know He will use them. THIS is the character building. THIS is what will strengthen me. THIS is what will give me the Hope, the endurance to do this every minute of Brooklyn’s life.
THIS is what faith truly is. It is having the discipline to TRUST when it is the last thing you want to do.
So I cried out to Him. I told Him I trusted Him until I believed the words myself. Over and over and over.
I trust Him.
Do you?
“I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD.”
Psalms 40:1-3 (NLT)
This is also posted over at The Journey.
Hi everyone!
Just a quick prayer request for Brooklyn. She will be having her full brain/spine MRI this coming Monday and has to be put under again.
Not to worry…this is just a baseline test to evaluate her anatomy and to see how her ventricles are responding to the shunt. It’s an outpatient procedure — so we should be in and out in 5 hours — but I still ask that you pray that she comes out of the anesthesia okay and that the MRI doesn’t reveal anything negative. The test is supposed to be around 11am.
As always, thank you, thank you, thank you for your prayers. Our family is so blessed to be covered by your words!
I’ll keep you posted on how our little rockstar does on Monday. Until then, here’s a picture of her contagious smile. Clearly, your prayers are working!
When we brought Brooklyn home the other day, the first thing Emma did was kiss the stitches on her head. She didn’t grimace like I did; she wasn’t scared. She just gave her sister a little love because, well, that’s what big sisters do… especially when they haven’t seen their little sister in a few days.
When Kendall saw the shunt for the first time, she said, “That’s so cool” and giggled. She gave her “Brookie” a quick hug and skipped off to play.
I know they don’t totally get it, but in many ways, they get it so much more than I do.
They teach me so much, these little ones.
Love. Acceptance. Peace.
This isn’t easy, but it doesn’t have to be complicated.
I am learning that life isn’t always about totally “getting it” because let’s face it, sometimes “it” just doesn’t make sense at all. And many times, “it” just isn’t fair.
“It” is about finding the love, the joy, the giggle.
And then trusting that in time, the understanding will come.
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”
Isaiah 55:8-9