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| typewriter image courtesy Hayley Novak of Fire Fighters Family. for real, visit her blog. it's pretty much awesome. |
It's been a regular week around here. Chloe gave us scares and nervous moments, desatting oddly, running a fever the weekend before last that we all thought was a virus, then after three days thought was an infection. She was restless and less than thrilled to be touched or held. Come to think of it, I can't even remember the last time I truly held her...at least two weeks? Maybe a bit more? Just the soft touch of my rough mama hands gracing her flushed cheeks, or supporting her upper body so she could sit up for the few blissfully sweet moments that she wanted a change of scenery for before letting us know she was ready to cuddle up on her pillow again. Something was obviously working on her and taking her down, but we weren't sure what. And sometimes the hardest part of parenting is not knowing how to help comfort your child, or if your tiny attempt to, like wiping her warm forehead, is enough.
Two ER visits in less than twenty-four hours, one early morning sunrise flight back to KC, and a ton of labs later, and we think we have a bit more info as to what the fever was all about. I think back to a few weeks ago when her brother begged for me to wake him early so that he could watch the sunrise. I did, then later found his other sister cuddled with him in the big office chair, watching the sun rise over the Flint Hills. I guess Chloe was mad that she missed out on that moment and demanded her turn to watch a beautiful sunrise with her friends, the flight crew. Her team agrees with us and is pretty sure she picked up a virus after one of her last appointments. This virus caused her to get sick enough to become dehydrated. The dehydration paired with all of her diuretics made her little body too dry. So we compensated by pulling most of her diuretics. But we over-compensated and that swung the pendulum the other way. She's now admitted and thankfully, praisefully (new word!), her kidney levels are coming down very nicely. Because of this, we're able to be more aggressive with getting her diuretics back on her. Her daddy has informed me that five bedside pokes, and three pokes under sedation later and we finally have a midline in her arm as of today to give her more IV diuretics because she's maxed on what she can receive via her g-tube.
We're thankful. We're thankful that the team isn't freaked out, that her kidney is behaving well with others, very well actually, and that this is simply a case of the pendulum swinging too far one way, then the other. We're oddly thankful that it'll take a week, maybe two, to get this under control and find the new balance because in the meantime the mama and other two littles are home two hours away playing with germs call Cold, Cough, and possible Virus. We're hoping to all get better soon and the coughs to pack their bags so that we can all balance health with timing of Chloe getting discharged once her fluid balance is figured out again.
It seems sometimes like there is so much balance that goes into raising a child like Chloe. There's this balance we try constantly to grab but is just within our grasp that we call "normal". The transition from pre-special needs child to with-special needs child is hard. It's give and take. It's trying new things. It's finding new balances. And often I feel as if there are moments, glimpses, like when I'm home alone with all three kiddos, no nurses or phone calls to the team, that we've found our normal again. There are tears when we realize today, or yesterday, or that day last week was so far from normal. There are unspoken moments, like watching as a family from our minivan as the ambulance drove past us in the ER parking lot to head to the airport with our sweet daughter/sister and the questions about Heaven that our four year old happened to ask at that very moment, balanced by a six year old's tantrum the minute we got home because he did not want to go back to sleep after that little 3 a.m. adventure, because his mind couldn't grasp why it was still dark outside but we all were awake. There's schooling the kids like nothing is different, in the quietness of our home without machines on while her daddy sits beside her at the hospital miles, towns away.
Those, strangely, are the easy things to balance.
The harder thing to balance is grief.
Yes, grief. Here's a little insight:
It's there. It's always been there, since that ultrasound. We find it surreal, and we also find that people do not talk about it very often. Grief is usually associated with a person's passing, but not associated with a person still very much here with us. But we all have seasons of grief. Grieving a lost friendship. Grieving a distant family member. Grieving not getting into that college, or getting that job, or ending that engagement. I think Lady Mary did a ton of grieving on Downton over her many broken engagements and lost beaus. Sorry. I digress. Final season for Downton Abbey, so I guess I'm grieving that as well. The point is, there are seasons of unexpected grief in lives like ours, and it's always sneaking up, catching me off guard.
The current season of grief is watching Chloe's peers running. One little foot in front of the other, with quick pitter-patter sounds. Even those babes born months after our daughter are walking. Taking their first precious milestone-get-the-camera-out steps. Don't get us wrong-we're overjoyed for those little ones who are about to give their parents an eviction notice on the honeymoon period known as pack-n-play or baby gates. These toddlers are toddling, walking, climbing. We're beyond and over the moon that these little ones are thriving and healthy.
But Chloe can't sit up on her own yet. She's just starting to let the earth touch her feet with resistance.
And the worst part about this grief of noticing one milestone not met after another? The guilt. I hate that I have grief instead of pure joy in the first place, but hate the guilt that goes with it just as much. There's a guilt that comes usually seconds after that grieving moment. I struggle greatly with the sin of jealousy and envy when I see toddlers these days. Last year it was a grief over seeing perfectly new babies, swaddled and sleeping on their mother's chest, or hearing of a perfect birth story where the baby wasn't swept away to a team of NICU nurses and therapists and surgeons. This year it's seeing a toddler run to their mother, be swept up in her arms and fling their own chubby arms around their neck to hug her. I'm waiting, ever so patiently and unpatiently for her to learn how to embrace me back. I still do not know what her hugs feel like. (New word again! The prefix un means not whereas the prefix im, as in impatient, simply implies I'm changing the meaning. I prefer the new word unpatiently, for I am certainly not patient on many occassions. Grammer lesson done.)
I know this is a season. My heart knows this is a season and it will pass, and that I need to fix my mind on the fact that she's still here. That she's met more in-depth milestones than most her age. Maybe she's not walking, but she's alive. Maybe she's not talking because of her trach, but she's survived two open heart surgeries. Perhaps she's not sitting up yet, but she's home. Well, except for this little dehydration-out-of-control moment. Her daddy is so great to look me in the eye and remind me to be thankful for all that she is, not what she isn't quite yet, and yet at that very same moment to allow me to grieve.
So I'm on the balance beam these days. Our whole family is. We balance moments of grief with spurts of excitement and progress. We balance living for a few days or weeks in different zip codes. Different states for that matter. We balance playtime and normal down time with the older kids with schooling and trying to get slightly ahead on school for when spring-time cleft palate surgery gets scheduled. I balance rest and recovery from these germs with getting things done while I don't need to be in the same room as Chloe {when she's home, we can't leave the room//area unless there's a nurse or another adult around. Then again I have a legit reason why the laundry isn't done on days when I'm the nurse}.
But even still, there is one thing that does not need to be balanced. And that is with my Lord. I'm so, so thankful and learning more each day that I'm not supposed to balance this with Him. I'm not supposed to "do my part", or "pick up the slack" or "pull my own weight" in life when He is in it. Because there's no balance, no scale to measure how much I do vs. what He does in my life. I can thankfully let Him lead. Let Him hold my tears. Let Him encourage me on the hard days and rejoice with me on the good. I'm not always the smoothest at letting Him have control, but I'm learning.
The thought lately spinning around in my head is that this is His story that He is writing and I need to stop trying to edit it. And if part of that story is learning about a new kind of grief and acceptance, then I'll let His broad strokes wet the pages as I live it out. And I admit that I'm far from living it out perfectly. And even though I don't understand why, I'm learning to be so thankful that He's trusting us to live out this particular story, in hopes that
somehow,
in some way,
it brings Him glory.
"For You have delivered my soul from death, my eyes from tears, my feet from stumbling; I will walk before the Lord in the land of the living." Psalm 116:8-9
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