To somebody else...

I've been really deep into life problems lately.  I'm deep in the trenches of problems wondering if I will every see the top of the valley. Every time I get sucked into that valley of problems someone reminds me that people see me, watching what I do, how I respond and who I am. I mean something, much more than the sum of my problems to that person.

No one expects anyone to ever call them an inspiration, it actually takes you off guard especially when it's from someone you admire.  No one expects someone to tell them they're making a difference, and that you see me and you are inspired by me.  No one expects someone to casually say, I love your blog.  It's humbling, and it reminds me that someone is always watching, and you are not a walking portrayal of your problems. You're not. I don't even think I have experienced this before.  It still chokes me up to even write this post because we all mean so much to someone else.  It's nice to be reassured that you're loved and admired.  Everyone needs that and I just didn't know, I didn't know that I meant so much to people I admire, and people with their own struggles.  Let's talk specifics, in one week I: talked to a friend and mentor who is struggling with illness and that person told me I am an inspiration to him and others, received a card in the mail with words I read almost every week, and two people who just randomly told me they read this blog and they love it, and they said it with sincerity.

When I talk about giving up, I always think about how much one person can handle, and why things don't ever seem to go my way or why someone isn't looking out for me or why anyone would ever give me a hard time about anything given what I already have on my plate. This is my version of giving up, not caring about my blog, not updating you about my family, retreating back to a private life of well, privacy, left to struggle alone with life and my children's illness. Sometimes I am really defeated, and sometimes those problems are huge and sometimes those problems are tiny but I haven't given up. Sometimes it's hard to look for hope, sometimes it's hard to look for signs that things are heading your way and whether what you need will come fast enough or will the wait be agonizing or we'll be hanging on for dear life.

Thank you for making me mean something to you, and thank you for that weeklong lifetime boost I so badly needed.

Much love and admiration to you,

Amy

The Perfectionist & The Rare Disease

Roll back to December of 2016, it's the end of the year, well over 8 months ago, and I am still thinking about how crabby I was during our Pediatrician appointment.  Our experience with managing our children's rare disease is that the parent or primary caregiver commonly receives a list of recommended specialists; a cadence for testing and monitoring/follow-up appointments.  These lists are generally provided by Genetics but are also a source of information for your Pediatrician and other critical Specialists who are part of your team delivering care for your child.  It's overwhelming, and all you can do is your best with it.  I am obsessed with these checklists and doing "everything right" that during the appointment I became so extremely disappointed in myself for not getting "everything done"; some things were not even done in the right order. Some things seemed as if we took the wrong child and should focused on the other child instead, e.g. like allergist appointments, etc. I felt like the appointment was like an audit, and sometimes appointments can feel that way even if you're working to set the plan with your Geneticist for the next six months or year.  The plan is the gold; it's the plan.  You can't mess up the plan.  Oh but you can.

I can still "feel" sitting in that appointment, and running down the list of things we needed to accomplish...a list that would generally overwhelm anyone let alone the fact that we have two children with that list.  I was grumpy and annoyed that in my mind we were failing the audit, we sucked.  I even blurted out "why would we do that?".  I felt bad for anyone around me watching the intensity with which I was so disappointed in our management of the disease.  That my friends, is ridiculous. That is someone who is tired and needs a break.  That is a perfectionist.  There's a bright side to this in that I see a challenge and I want to tackle it head on. Knock down the disease, and take it out but while doing that I am taking my own self out with it! Perfectionists and rare diseases do not mix.  Flexibitionists (< I thought I made that word up) only apply, adaptability welcome but not perfectionism.  What do you win for perfectionism?  Does your child only then get to survive?

What have I learned?  Negotiation skills, advocacy skills, and prioritization.  I now do not just accept the list, I ask questions. I press for importance. I press for opinions, consultation and prioritization. I also realized I am not just managing the monitoring piece but ensuring there is balance in my children's lives. Someone has to ensure the financial aspect of it is covered: what's the co-pay or co-insurance, etc.  This is my job. I know that one is always going to be out of whack.  We might get the sleep study scheduled, but there may be no sleep and it may not be covered.  We might also win some, and we do.

Don't do this to yourself.  You're not perfect.  I am not perfect. You don't work for anyone but you and your family. In this case the physician sensed my stress and was willing to help but had to witness some pretty severe, unfair treatment of myself. No more perfectionism, the end.

Amy