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)
~Lisa (@ Heaven Sent)
4 comments:
Great post, and LOVE those verses; I clung to them when our sweet Toby (with SB) was in the ICU - hanging in life's balance and when he got a trach, a ventilator, a g-tube, and so much more than we expected with Spina Bifida. So glad we can trust in the grey!!
Carrie
www.caringbridge.org/visit/tobyholt
http://theholtjoys.blogspot.com/
Quick update: Today's MRI showed signs that the shunt is working, and Brooklyn is slowly responding to the new pressure setting. She does seem more comfortable now as well. So, we wait some more and follow up next Tuesday. Thank you all for your concern and prayers! ♥
So beautiful! I don't think we've "met" before but I feel like you're a sister already! "Faith is the substance of things HOPED for, the evidence of things not seen." -God responds to our faith and He's with you! So nice to meet a fellow believer! Awesome news about her shunt! I will be praying that you "hear His voice" in the midst of the "grey." He's with you! - I'm currently working on starting up my own blog. Should be up soon!
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