To Austin: On Your 10th Birthday

It's Austin's 10th Birthday!!!

Can you believe it?! I never in a million years thought when we first got the news about his "lack of potential", to put it nicely, that we'd make it to double digits. 

I wrote this birthday blog post below on his 5th birthday. Every year I re-read it and realize I can never say it better again. Happy Birthday Austin!

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Tuesday, January 5, 2016

TO AUSTIN: ON YOUR 5TH BIRTHDAY

Well Austin, you turned five today. You woke up with vigor, smiling, laughing, and kicking as if you were really going somewhere, ready to take on the world. You wriggled, arched your back, and threw your head back and forth as if you could propel yourself right off the bed and into a miracle.

I take that back. You are already in the midst of a miracle. In the beginning, I never would have predicted we would make it to this day. I really did think that even if you survived your birth, you would never make it to be 5 years old. Five years just seemed like such a long time to fight the odds that were absolutely not in your favor. Many kids with similar challenges have tried and failed.

Yet here we are. You, continuing to breathe, in...out, like you have done from day one, and me, continuing to breathe, in...out, right along with you. I remember your breaths in those first few days, shallow, raspy, tentative. Yet whether it was merely your human spirit that kept you alive or your body's natural survival instincts kicking in, I'll never know. But I don't think we were completely responsible for choosing life for you. We gave you the opportunity to live, but you had the final say. You chose life too. And in choosing life, here's what you've done for me:

You've challenged me. You have forced me to take on a project that has no end in sight, to get up everyday knowing that I have not fixed things or figured out just the right solution. And yet, you force me to keep trying. I can't give up; I won't run away. And little by little you and I make small progresses, slight changes that aid in your comfort, minor adjustments that aid in mine. And sometimes we regress. That's ok too. 

You've blessed me. I'm not talking about the things we think of when we say we are blessed like your darling little crooked smile, your belly laughs, your happy chirps, or your indomitable spirit. I'm talking about the mysterious, paradoxical, "beatitudal" blessings that occur when life persecutes. You've caused me to be poor in spirit and have to lean on others for their faith, to mourn and experience grief to depths I never have before, to take on meekness as I admit I'm not strong enough do this alone, to hunger and thirst after God for answers. 

You've loved me. You have managed to extend that trusting, dependent, newborn type love out over five years and will probably continue to into the future as long as you are dependent on us for every aspect of your care. It's a draining kind of love. A dependent love. A desperate love. You need me. But I need to be needed.

I had always held out this five year mark vaguely in the back of my mind as some kind of destination. For some reason, I had certain expectations of things that should have happened if you lived this long. I thought for sure that you would be holding your head up on your own by now, perhaps have a few understandable words in your vocabulary, maybe even be moving towards a crawl or even a walk. But now as we are hitting this arbitrary marker, I wonder what my goals for you should look like? What are my goals for me? Where do we go from here? How do we get on?

And yet. We will get on. We will wake up everyday, sometimes with vigor and ready to take on the world, and sometimes with fear and trepidation, feeling puny and needing constant care. We will be challenged, blessed, and loved by each other, by our family and friends, by our God. We will stumble, fall, and fail. We will get back up, shake off the dust, and renew our spirits. We will continue the miracle to whatever its end. We will continue to breathe, in...out.

On Lists and Living His Best Life

I secretly congratulate myself after we arrive at our winter vacation destination. Preparing and packing for this road trip seemed to go so easily this time. Almost too easily. 

I have a packing list on my computer that I started when my now adult boys were little. After Austin was born, that packing list became the saving grace for us to be able to leave the house for extended periods of time, confident we had everything including the kitchen sink. Austin's list is twice as long as mine and my typical kids'.

While I'm digging in the bag for his 3 inhalers, preparing to count his twelve breaths as I administer each one, his dad walks in and casually asks, "Hey, where did you pack that white stuff?" 

He's referring to the main fat ingredient in his custom, ketogenic feeding pump recipe that he's on to keep him in ketosis for partial seizure control. It's a medical grade, emulsified MCT oil. You can buy it off the internet, but as with all "medical" products, the markup is 8-10 times what it should actually cost. Thankfully it's something insurance pays for and ships to us through a medical supply company. 

And at the moment it is currently sitting in our home pantry, miles away.

Dagger in my heart. 

That's what that niggling feeling was when packing had seemed too easy. 

I stay calm (for once - work in progress) and start problem solving. I have access to the nutritionist's keto calculator and permission to adjust Austin's recipe whenever necessary (and thank God, because sometimes I run out of an ingredient and need to substitute something else temporarily - the only risk being that he may not tolerate the new substitute ingredient.) 

Thinking about what might already be here in the cabin, my first thought is to try olive oil until I remember they sell regular MCT oil in the store to be added to coffee and stuff. I add the ingredient into the keto calculator and come up with an equivalent amount to satisfy Austin's diet parameters. We cross our fingers and make the recipe with regular MCT oil hoping he will tolerate it until we can get our home supply shipped overnight to us. (Thanks grandad!)

Onward and upward.

After I give him his inhalers, I brush his teeth. He usually ends up with a mouth full of toothpaste-y secretions no matter how little I dab on the brush. 

I flick the switch on the suction machine to get the extra foamy saliva out of his mouth so he doesn't try to swallow or inhale too much of it.

The motor sounds sad and lifeless. No problem. I had forgotten to charge it in the hotel the night before, but I can charge it now and also run it while it's plugged in. 

I lift the side pocket flap. No charging cord. I lift the other side pocket flap. No charging cord.

Another dagger in my heart. 

How could this be happening? I have a list!

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In this past year of 2020, the year of Covid-19, stay-at-home mandates, social distancing, masks, protests, rioting, and election turmoil, Austin lived his best life so far.

He's had virtually no school (5 days for the entire year), almost no nursing care (the occasional visit here and there when we've asked), no therapies (until this last month when we restarted the outside-of-school options). 

But he's also had no sickness, no hospital stays, and the best part, no expectations, and no obligations.

Austin and I have become the best of friends. We are together most of every day. 

I provide all of his care during the weekdays and share his care with my husband in the evenings and on weekends. Whenever the big boys have been home for holidays, they help out too. His grandad has also spent a few hours here and there watching him if I need to leave the house for an appointment during the day. 

I've learned for now, that unless we need a break to go on a date or out with friends, I don't really want a regular nurse schedule, or the stress of interviewing, or the stress of nurses calling off at the last minute. I realize there may be a time we need a regular nurse schedule again, but right now I actually love not having strangers in the house all the time. It's almost like we are normal.

I also love not having school. No rush to get ready early in the morning. No anxiously anticipating if they are going to call to have me pick him up in the middle of the day. No anxiety over him having seizures, aspirating, or getting sick at school. 

And best of all, no dress up/theme days for me to feel guilt over not participating, no school supplies I have to feel guilt or stress over providing or not providing, no anxiety over bus driver or nurse schedules aligning with our own personal schedule of doctor appointments, sickness, or vacations. 

This year had been a breath of fresh air. 

Weights off shoulders. 

Priorities exposed. 

New lists written.