Tuesday, June 27, 2017

If you build it.... it will still want to go to camp.

Imagine you've been building a Lego structure for 8 years.

There are so many different instructions and rules required to build the structure.

There are random pieces that are all over your house, and you keep bare-footing that one white piece that is flat on the top and can only be used for that one edge on the far right corner.

The manuals are in a huge pile; crumpled and out of order.

Some days your structure looks like its working out perfectly and you are following all the right steps, until you find the right manual, and turn to the right page.  You turn the page in the 37th manual to step 57 to see that you are "now going to remove all the pieces you assembled from steps 23-56".

Not a lot about this project makes sense and you absolutely hate every thing it represents, however your life and sanity depend on your efforts and successes.  These lego pieces have the ability to give and take away actual breath.

Oh, also you are working on this undertaking all day, every day and it even keeps you awake at night because you worry you did step 114 wrong.  At this point you hate the work, but you're strangely proud of your efforts and what you've built to this point.

You might argue: Not wrecking the structure, or melting under the pressure could be your greatest achievement to date.


Now, imagine packing up your project.  This thing you've been building all day every day for 8 years.  The thing over which you have cried, sweat, bled, rejoiced, studied and prayed over, this beautiful monster that makes you crazy and sane all in the same breath; you pack it up with all of the instructions and extra pieces and hand it all over to a wonderfully willing someone whom you have never met.

Some one else is going to be working on this project in your stead for two weeks.  Every day. Every night.  Two whole weeks.  You can't watch what this someone does or micro manage how well they fasten the pieces together.  You can't go behind to correct the missteps to be sure the whole structure doesn't implode.  The fact that you are thinking about it all the time takes up valuable parts of your brain space.  The loosening of your grip is proving to take physical breath away.

It's not the control you will miss but the freedom in the knowing.  You're going to miss knowing all is well simply because you can look across the room and see for yourself.

I'm sending my Legos to camp in a few days.  Bug wants to go to camp; and not diabetes camp, camp for "regular kids". (her words, not mine)

I have prayed and worked and stressed and prayed over this decision for two years.  Bug has known what is required of her to reach this goal and she has surpassed it exponentially.

Last summer she switched to shots so it would be easier to be in and out of the water at camp.  In April she started wearing a Continuous Glucose Monitor (CGM) so we could watch her blood sugars and see her trends.  She changes her CGM transmitter site every week by herself and when it alarms in the middle of the night with a high she gives a shot with a correction (yes, she knows how much to give and has not messed up yet even at 3 am when she's exhausted!).  If she gets an alarm for a low, she comes to let me know and I help her handle it; even though I feel certain she could even handle that on her own as needed.

She is exceptional, but she is still (almost) 9.

This human is beyond determined to achieve a goal.  When she knows what is required of her to reach the goal, not much will stand in her way.  She is smart and strong and she's going to be FINE.

But now, for the first time in 8 years, the castle I've built is left to it's own devices.

I've left her with countless babysitters and with grandparents, she has even spent the night with a friend (one. one friend) but I always had the freedom to pick up my phone and check in.  I had the freedom to know what was happening and the ability to help with any issue over the phone.  When she is at camp, that freedom is quickly restrained.

I have talked with the nurse on the phone.  She could not be more fabulous and is more than capable to handle it all.  She was kind and patient and gave courtesy laughs when I rambled and made nervous jokes on the phone.  She was in charge and organized and smart and even sounded smiley and pretty. She was guarded and wise and didn't act like diabetes was not a big deal.  My concerns and worries were validated and met with answers that I accepted.  I even said, "I don't want to be in the way of the nurses being able to do their job.  I trust that you have a system and that you have it all under control."  Then I rolled my eyes at myself for trying to "play it cool" with her.

Even now, typing that out I feel calmer remembering that I said that to her.  I do trust them! I do trust that they will do a good job and that they have a good system that works and that this is not the first diabetic they've ever met in the history of their medical careers.  She even told me that a woman that works there has CHILDREN OF HER OWN THAT HAVE TYPE 1 AND SHE WILL BE ABLE TO HELP WITH ANYTHING THEY NEED.  I laughed really hard when she told me that; hopefully in the least crazed way possible.

I had prayed for a counselor with type 1, or a that has a sister with type1 or a best friend, or mom, or even a dog; I'm still praying that prayer now: familiarity.  I hope and trust and rely in the control that the Lord has over Bug's life; her highs and lows and inhales and exhales.  He has gone before us to put people in charge of Bug's two short weeks that will be the absolute best for her and I really truly do believe that.


Excuse me, it's HARD!

I almost forgot to pack actual clothing for this kid because I was so fixated on "do I have enough glucose tabs" and "how do I make a fanny pack seem like a good idea to an 8 year old... because she has to carry all her STUFF with her at all times?!"  I have bought every glucose tab Target has had to sell the past three times I've been.  (going back tomorrow to buy more)  I called the CGM people to see how quickly they could send a replacement in case something happened to the existing one, and "is there any way we could jump through the insurance hoops ahead of time so the overnight option isn't in fact three days long?" There are countless lists and very little sleep hours logged.  I am neglecting normal duties like cooking and showering and have gone "full metal jacket" stress about what I'm going to forget.

My husband said to me yesterday, "I know you want to do it right as a first time camp mom." I do!  I want to do it right.  I want her to feel safe and confident in her care and also I would like her to live through it all.  Above all of that, I want her to feel as "regular" as she possibly can.  I want all her extras to fit seamlessly into her day.  I don't want her to be held back or slowed down or miss one second.  Her doctor is as guarded as I am, but said to me, "our goal is for her to feel, do, and act just like every other kid, and that is why we are doing this."

This is my current mantra.

I keep telling myself, that's why I want the medical stuff to be tucked in and tidied up.  I want every possible bump to have a fix so she doesn't miss a beat.  She's going to be fine.  She was made for things like camp and large groups of  energetic people and constant activity and she will not be ready to come home at the end of the two weeks.

My husband is not worried.  Bug is not worried.  The nurses at camp aren't worried.  I on the other hand, I will be the mom that prayed for and carried the baby that became the kid.  I will be the mom that gave up control over her health 8 years ago while holding a crying baby who would be declared diabetic only hours later.

Trusting is terrifying and also freeing.  I can't plan to avoid the worst or control to a point of assured safety, but I can hope and look forward to the peace that comes in the wake of laying down whatever rights I think I might have as a parent.  Bug is on Earth for God's glory and He will be sure to make that known, despite any efforts I make to do the steering.

Diabetes is only a tiny bit of who this kid is going to be and that is why I'm sending her to camp.  She has lived such a specific life for the past 8 years, and now the exciting, amazing, life giving details are starting to filter in.  I want these two weeks to go well; to be some of her best days yet.

I want her health issues to fade and her person to show.

I will leave my hard work alone, as best I can, for two whole weeks and I feel certain every moving part involved in the building process will be better for it.

You can be sure, that when we get her back: there will be rest again....

and possibly a champagne toast.

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