Love…you

Right now.

Bella’s formula comes from a medical supply company.

And her snacks are ordered from Amazon.

I keep joking that some day I will be able to just go to the grocery store to get this girl some grub.

 

But for now, it’s phone calls to get prescriptions (yes, prescriptions) for her formula and online ordering.

 

I’m currently on my fifth attempt to get Bella her formula. Fifth.

 

First attempt. Got dropped off on our front porch and sat for days while we were out of town for the holidays. (Labels says DO NOT FREEZE!)

 

Second attempt. I called and explained that we needed to figure out how to get a delivery when someone was home (maybe have it dropped off at work?). Right, someone will call you back to figure this out, they advised. 2 days later, another shipment gets dropped off at our front door step (and then left out for hours while we were yet again away for the holidays).

 

Third attempt.  Hi. I’m Kaylee. I need to place a re-order for Bella Page. But. Ok, and I don’t want this to sound mean but I NEED for this to not just be shipped. What I need is for you to ship it to my work address so that I can get it and keep it indoors. I’ve already tossed two shipments (and that’s a LOT of money for you folks!) So please. And thanks. And seriously, I’m not trying to be mean. It just needs to be right. We’re getting a bit low on formula. So I need this shipment to work….MAN ON OTHER END OF PHONE TAKES MY INFO, PLACES ORDER; ALL WHILE I SENSE A TINY BIT OF ANNOYANCE ON HIS END…. Okay, lady. You’re all set, He says.

 

Me, typing away a work email, responds: Love….you…

[DRAMATIC PAUSE TO LET IT ALL SOAK IN]

 

No good way to end that awkward moment. So I just hang up!

It was a slow I love you. Not quick. Not slurred.  It was long, clear and…. awkward. Really awkward.

 

Fourth attempt. The local distributor prefers we use their national center for shipment as they do not keep the formula on hand (mind you, I’m limited who I can order through as insurance has approved distributors). To handle the mistake of the two first orders, the local distributor drops off a shipment. Thank you, kind nurse, who went out of her way to drop this off on a Friday after work!…. It was expired.

 

Fifth attempt. Nailed it. BINGO! All set. Formula in hand. Not frozen. Not expired. NAILED IT.

 

That said, being a mom to a kid with special needs.

It is a world in and of itself.

 

You throw out typical parenting books.

Finding parental guidance – finding community — is hard (yet a must)

 

You spend hours doing your own research only to find out the doctor claims to “know” your doctor more than you do. Bless doctors, for the smarty pants they are – for the knowledge and expertise they have to offer your kid — but they at some point, belittle, ignore, forget, neglect to look at your kid’s chart before or during an appointment. They are busy. They are a doctor to many.

 

You cry. A lot. More than you ever thought you could. You cry to grieve. You cry with joy. You cry because you —- literally — are going to lose-your-mind.

 

You spend hours in waiting rooms, at doctor appointments and at therapy.

You fight hard. For everything: for their education, for financial support, for their development.

You advocate. To have your child notived. To have your child heard.

You. Often are the only voice they have.

 

You watch. analyze. critique. Wonder-dream-and-hope for signs of growth and development.

You worry about their future in ways you never thought you would and you fear deeply about what will happen when you’re gone.

 

It’s alarmingly different than you could have ever imagined.

It can sometimes make you laugh.

But most days you just try to survive it with grace and poise.

 

Oh formula guy, I do love you. For helping me get what my daughter needs. 

And for the good laugh I got today.

It was awkward for you, I’ve no doubt.

Please know. It was no more awkward for you than it was for me.

Send me your address and I’ll get you a proper apology in the mail. And, next time I promise to keep it professional. Promise. 

Just keep sending that formula!

Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

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