A Life Worth Celebrating

I really believe life is precious; worth celebrating. Whether big or small, young or old, neuro-typical or not, life is worth celebrating. So are milestones. You know, like birthdays and anniversaries and major accomplishments.

But, on the eve of a very significant milestone, I find myself ill-prepared, not ready to celebrate. My son turns one today. One year ago right now, I was in the hospital, working very diligently to bring this boy into the world. He didn't arrive for another twenty hours, but who is counting (besides me)?

It has been a very difficult year. Instead of being amazed at how quickly the last year has gone, we have made very slow progress; each month marked not by celebration and milestones, but by survival and sickness.

Admittedly, baby J isn't as sick as some. But I am physically, mentally, and emotionally exhausted by his needs. The energy and effort required to mount a celebration is simply not there. And that makes me sad.

Baby J will not pass this milestone uncelebrated, however. His big sisters worked on a cake, and his grandma is coming to visit in the afternoon. We won't make his favorite dinner (a long-honored family tradition), because he can't tell us what he wants. But he will eat cake and blow out candles to the tune of "Happy Birthday."

And I will have a choice; to focus on celebrating my sons first year, or on the fact that I am too tired to throw him a party. Honestly, I feel like a terrible mom for not doing a better job with birthdays in general. Instead of letting I ruin my day, however, I am going to make the most of what I've got. My son is a gift. His life is a precious treasure. And though the last year has been incredibly challenging, his is a life worth celebrating.

Stuck in the Desert

As I type this, it is 3 am. Awake and in pain, it has been an interesting journey the last few days. My back is out (though I have no idea what I did); I have a large sliver in my foot (I know how that got there, but not how to get it out) that hurts if I move my foot wrong or touch it to sheets or bed; my youngest son has been throwing up (no idea why that is happening, either), and he threw up on me multiple times.

In spite of the misery, this journey is almost comical, honestly. The problems, the illness, the struggles just keep coming. No sooner has one issue been resolved or overcome than another takes its place. None of the problems are really life-threatening (though the baby's have been close), just difficult; they are draining emotionally and physically.

This journey through the desert is also very isolating. Friends are busy; their lives full of their own challenges and struggles, joys and adventures. Like the old song goes, nobody likes a party-pooper, and people stuck in the desert can easily become party-poopers.

So far, though, God's grace is enough. He is helping me (begin to) embrace this journey in the desert. He is bringing comfort and peace, showing me that this journey is His call on my life right now. As I embrace God's invitation to journey in the desert (and one can either embrace God's invitation or reject the blessings; the invitation cannot be refused), I can clearly see His hand at work, orchestrating details and proving His "Godness" in many little ways. As crazy as it sounds, I am even finding reasons to rejoice and celebrate in this desert of loneliness, isolation, abandonment, and exhaustion.

Somewhere in the Bible, it says that God will never give you more than you can handle. I've wondered how close to the limit He is willing to go (since I am pretty sure we've gotten right up to that line more than once), but as my journey continues, one lesson stands out above the rest; God can be trusted. Knowing I can trust the God of my salvation brings a comfort I can't explain. Do I wish this sojourn in the desert was over? Yes, definitely. But will I trade what God has been doing in my life, what He has been teaching me for a shortcut to a beautiful oasis and an end to the lessons? No! I do not want short-circuit God's plan for me, or miss out on what I will learn about Him along the way. Life, I am learning, is much more about the journey than the destination.

Walking the Marble Halls

I recently spent several hours on the campus of my state capital. That in itself is not too big a deal. but, I wasn't alone; I had five children with me, all under eleven. The day was wonderfully educational. I learned several valuable lessons (I'm sure the kids learned something, too).

First. I learned that our state capital is most definitely NOT family friendly. Parking is terrible. Any spaces relatively close to the building itself are reserved. Residential parking is available for an hour a day, and (if you can find one) visitor spaces are available for $1.50/hr. $1.50 adds up quickly (especially when it takes 15 min just to get unloaded), and an hour can be incredibly short.

Also, capital buildings are filled with very serious looking people (mostly men) who ave completely forgotten what it is like to be a small child. Not only have they forgotten what is like to be a child, I think many of them have forgotten that they were children, or that they are suppose to represent the children in their districts as well as the lobbyists in the marble halls.

Finally, I learned that the marble halls (which can be quite intimidating) are really not so scary. And even in such lofty places, filled with powerful men (and a few women), real people still walk. It was a truly amazing experienc; one I hope to repeat again some day. Next time, though, I want to do it on a sunny day (when I don't mind walking several blocks), before nap time, and with plenty of snacks; for my children, and for those who have forgotten what being a child is like.

Learning Curve

My eleven month old son loves to climb stairs. Unfortunately, he is not very coordinated, so he is as likely to go down the stairs involuntarily as he is to go up. Consequently, we usually sit beside him as he crawls. Some of the time, however, we really don't have time to sit on the stairs while a not quite one year old practices his climbing skills. So, we push a stand-alone baby gate in the way.

This technique has worked quite well for several weeks. Today, however, our eleven month old made a discovery; the gate moves! So, he deftly pushed it out of the way and began to ascend the stairs without an escort. Life as we've known it is about to change; bummer!

On the bright side, our little guy, who has been plagued by so many struggles in his short life, is no dummy! I guess the change is good, in the end. I certainly don't want him stuck behind gates his whole life. I'll follow Ann VosKamp's lead and choose my son's mobility and ingenuity as something I can celebrate today.

Understanding and acceptance

It appears after almost eleven months of struggle, that we have some answers as to why our baby boy has struggled so much with life. He has some sort of brain injury. The specialist called it "static encephalopathy." In layman's terms; Cerebral Palsy. The reflux may be secondary to the CP and does explain the frequent sinus infections. JJ's fussiness/irritability can most likely be traced back to the CP, as can his thermo-regulation issues. Even his sensory issues can be traced back to the CP.

Though no parent wants to be told their child is less than perfect, I am very relieved. JJ's life will never be easy (whose is), but God knew that from the beginning. Like Bethany Hamilton, I don't need easy; I just need possible. Now that we have answers, finding ways to cope is very possible. And that is something I can accept and celebrate.

God's goodness isn't dependent on circumstances, and in these less-than-perfect circumstances, we choose to celebrate God's goodness, too. What a gift!