The Absurdity of the System

So, I contacted a doctor at the International Adoption Clinic at Children's Hospital in Oakland (CHO).  This clinic does a 4-5 hour diagnostic checkup on a child who has been internationally adopted to assess what kinds of treatments and needs this specific child has.  The needs of internationally adopted children can be many and varied, and range from physical/developmental to emotional/psychological.  When I described to her Ai Lan's issue with seizures and Sturge-Weber Syndrome, she suggested that even though Ai Lan wasn't here yet, I should try to call the pediatric neurologist at CHO to get an appointment since those are hard to come by...it could take months (for the record, my sister in law also called to make sure I knew this as well...thanks Jamie!).

So I called neurology at CHO to make an appointment and was told, "You need your pediatrician's referral to get in to our neurologists."

So I called my pediatrician and her office staff told me, "We cannot give a referral since she is not an established patient."

Me: "Well I certainly can understand that, but my daughter isn't even home from China yet.  But she has several MRI and CT scans plus the port wine stain that indicate she has SWS, and recently she started having seizures.  The level of care she is getting there is far below our standards.  She needs to be seen asap, if for nothing but to make sure the meds she is on are the right ones for her.  If I wait until she gets home, it could be months before we can get her in."

Them: "I'm really sorry, but we can't help you."

Me: "But Dr. ____ already sees 4 of my kids!"

Them: "I'm so sorry, I really am, but it's policy."

Me: "I can't possibly be the only person who has ever adopted a child internationally who needed immediate care upon arrival in the US!"

Them: "My suggestion is you call Children's in Oakland."

Me: "I did - they said I needed a referral from you."

Them: "Oh."

And so it begins...and this isn't even the worst of it...by far.  I have no illusions that this will be my last and final battle in the effort to make sure my daughter gets the care she needs.  And if they I'm going to roll over and say, "Oh, ok, so sorry to bother you," they've got another thing coming!  This mama bear is VERY good at banging garbage cans until she gets what she wants!

So to every mom, dad, or caretaker out there who has been going through this run-around for months, years, or decades while they watch their children pay the price, I say to you...

You are a hero.

You are a fighter.

You are an advocate.

You are amazing.

You are a great parent.

Now, can someone remind ME this on a regular basis?  Thanks...I'd appreciate it!