Turn those frustrations into drips of sweat

I wanted to scream, but I was home alone with 4 boys (my 3 plus a friend's son).  Many adults frown on other adults screaming in the vicinity of children (and if you don't frown on that, I'm concerned for you and any child near you!)

I couldn't scream.  I wanted to go for a run, but remember those 4 kids?  Yeah, I couldn't just leave them home alone either.  I wanted to eat some junk food, but thankfully had none in the house and the prospect of taking 4 kids to the grocery store sounded unpleasant.

So I plastered a smile on my face and cleaned my kitchen.

Please tell me I'm not the only one who cleans when I'm frustrated?!!  I find it to be a good stress reliever.  Although I have to really bite my tongue, because I often find myself getting angry about the messy house while I'm cleaning it.  I have to remember what I'm really angry about.  And it's not the house.

You see, managing a special needs child could easily be a full time job.  I could put in a solid 40 hours a week just doing appointments, therapies, phone calls, emails, records management, and insurance.  Then there's that little thing call *parenting*.  It still has to be done.  Go figure.

And oh right, I have 2 other children.

And a husband.

I am immensely grateful for the medical professionals in my son's life.  I really am.  I recognize just how much knowledge they have, how hard they work, how my son is not their only patient.  But while I acknowledge that, I simultaneously do everything in my power to ensure that my son IS the MOST IMPORTANT patient.  I understand that policies and protocols exist, but at the same time I DON'T FREAKING CARE about them.  I want what I want because it is what's in my son's best interest.

As you can imagine, I have quite a few run-ins with medical staff :)

Through this journey I've learned that you really catch more flies with honey, and since our options for medical care are limited, I can't go around burning bridges.  So I'm always polite.  I apologize for "bothering" them.  Until they tick me off, then I remind them that I PAY THEM.  If I get really ticked off, I threaten to pull my son from their care and take him to a closeby competitor hospital.  That tends to get people's attention.

I'm just a mom.  A mom who wants her son to succeed in life WITH his 22q, not DESPITE of it.

So I call Patient Advocates sometimes.  I work with the Clinical Concierge.  But just as often, I send praising emails.  If a staff member is exceptionally helpful or even just friendly, I try to remember to send an email.  If I get a survey card or phone call, I mention at least one person that has shown genuine compassion.

So after spending a good portion of the day today dealing with various "issues" I was very ready for a workout tonight.  I didn't get to it until 10pm, so it was a shorter workout than I would have liked.  But something's better than nothing, right?

Here I am...10:30pm...sweaty from a quick workout, a "hope" necklace, and a 22q shirt.  And a little less frustrations than I had before I started!