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!
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