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!
I’ve been angry…at God.
There I said it.
But not to worry: He knows it; we’ve talked about it; and we’re working on it.
Well, I’m working on it. Thankfully, He keeps loving me anyway.
Now, let me clarify. I’ve said many times that I have never been mad at God for giving our family a child with Spina Bifida. That is still 100% true. I am not angry about the Spina Bifida.
I’ve been angry about, well, everything else.
Let me explain. Everyone always talks about accepting your “new normal” when you have a child with special needs. And I got that. Or at least I thought I did.
I have totally accepted the fact that our “new normal” includes things that most mothers and families don’t have to deal with — constant doctor appointments, physical therapy, medication, catheters, surgeries, etc., etc. These things help Brooklyn, so I can deal with all that. (Most of the time.)
What I didn’t realize is that our “new normal” ALSO includes the things most mothers and families DO have to deal with — money issues, job stresses, lack of sleep, allergies, illness, etc., etc.
I guess I somehow thought we’d get a “pass” on some of the everyday stuff now that we had this new challenge in our lives. Like suddenly a money tree was going to fall out of the sky to pay for all the medical expenses. Or HGTV was going to show up at my doorstep and decorate my new(ish) house for free. Or that Jeff and I would become the world’s best parents and know exactly how to handle a very sassy 3-year-old or a kindergartener that still has not outgrown full-out meltdowns.
Not so much.
I didn’t realize all of this at first. It wasn’t until some soul searching and some tearful discussions with the Man upstairs that I realized why I was in such a funk. Honestly, I guess I thought I deserved an easier life because of our challenges.
But of course, that is not true. I don’t deserve an “Easy Button” any more than anybody else does. That isn’t the way life works.
Life is messy.
Brooklyn is not a perfect baby. She cries a lot and most likely won’t let you hold her. She doesn’t sleep that great at night, has zero interest in cereal, and often pees through her outfit 10 seconds after she is fully dressed. She has reflux issues (like her sisters), and I have to avoid certain foods so she can better tolerate my breastmilk.
Granted, she is a rock star in many ways (and has the most adorable smile), but she is still a baby. A gooey, cranky, diaper-dirtying baby. But, really, why wouldn’t she be? That’s the way she should be. She is human, and she is wonderfully and uniquely made.
Even Jesus’ life was messy. Look at his birth. Yes, we all know there was no room at the inn, but we still glamorize the whole event. Nativity scenes depict a warm cozy stable full of hay and adorable animals surrounding a peacefully sleeping baby. But the truth is, Joseph and Mary were probably in a cold, dark cave — a common place to keep sheep and other animals in those days. A cave full of manure and animals that haven’t been bathed and were probably not very understanding of the whole birthing process. Not exactly the ideal birthing scenario. Yet out of that messy situation, God brought the greatest gift of all.
So I am learning to appreciate our mess — all of it — and I felt it only fair to share that with you. I could hide behind this blog and pretend that life at our house is perfect and happy and full of adorable baby smiles all the time, but that’s not true. It is often chaotic and sticky and most definitely messy.
But I refuse to turn this house into a pit of pity. Perspective is everything, and as long as I am talking to Him, reading His word, and accepting His grace, I am convinced this mess is going to turn out to be the life He planned for us.
Until then, I will do my best to enjoy the ride and dive straight into the goo if I have to. He will clean it up.
“Create in me a clean heart, O God. Renew a loyal spirit within me.”
Psalm 51:10
“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”
1 Peter 5:10