When shots are the least of my worries

Yesterday, Juniper had her two month well baby visit.  I'm not sure what I was expecting from the pediatrician since doctors really don't know much about lymphedema, but I ended up getting my feelings a little hurt bent out of shape.  
When Juniper was a newborn, I always had black and white Montessori cards in my diaper bag so that I could encourage her to 'practice her attention.'  Now all that's in my diaper bag is 15 pounds of cloth diapers and larabar wrappers, so there is not so much of the 'attention practicing' happening in the peach-walled office for 45 freaking minutes.  This is Juniper saying "Where is my Hello Animals book Mom? And why does Dad alway have that black box attached to his hand?  Hi Dad! Do you have my Hello Animals book?  Do you know why there aren't any pictures in here or anything that is remotely interesting for me to look at?  Why? Why?"

I should back up a little and explain that primary lymphedema is the result of a gene mutation, but there are a couple of ways that this mutation presents itself.  The first is called Milroy's disease, which is basically the name given to the gene mutation that causes just the lymphedema.  The second is called Noonan syndrome which is where the gene mutation causes lymphedema along with a host of other health and learning issues.  I know that every parent believes that her child is brilliant, and I am no exception to that rule, but I know in my heart that there is nothing seriously wrong with her beyond the lymphedema.  In reality, I know that Juniper may not be the smartest kid in her class, but kids that are affected by lymphedema, from what I have learned through some online parent groups, are "normal" in every other way.  Noonan syndrome is a whole other thing entirely because lymphedema is basically just one marker of the disorder which consists of many other problems.  
The fact that doctors don't know too much about lymphedema is, in my opinion, probably due to the western model of medicine not liking things that are not 100% scientifically reasoned.  I mean, a quarter of the treatment of lymphedema is massage; not exactly your standard western treatment of care.  Lymphedema doesn't fit in a neat little box that can be fixed the same way, each time, for each person.  It is different for everyone and can change based on the weather, on hormones, on altitude, and just because.  
At San Onofre.  Dad surfed, Mom didn't because a) I forgot my beach bag with my bathing suit at home (yes, I forgot my beach bag when the plan was for us to go to the beach) and b) there was actually some swell in the water and after about 11 months of not surfing I am a wuss.  
So when our pediatrician brought up Noonan syndrome, I prickled.  Then when she told us that Juniper's head was on the small side , and that she'd check and see if that was something related to the lymphedema, I worried. (Any of you that know Daniel know that he has what I affectionately refer to as a pinhead.  My whole pregnancy I hoped that baby would inherit D's tiny head to make my life easier.  Obviously, J has her Daddy's little head and I need to get mine on straight instead of worrying about baby growth charts.  Hindsight, friends.)  And when, at the end of the appointment, she said something along the lines of Juniper 'doing as much as she is able to do.' I got upset.  I didn't cry in the office or anything, but I let it get to me.  D says I need to get a thicker skin because people will probably say much worse about and to Juniper her whole life.  I know he's right, but man is that mama bear instinct strong, I just want to freak out on anyone who thinks that my baby isn't just like every other kid (or at anyone who thinks my baby is just like every other kid).  
This is what practicing attention looks like.  She's talking to her munari mobile

And I thought that her getting a shot would be the worst part of the visit.  


  1. That leg looks just perfect for kicking a lot of ass. She's a super hero in training.

  2. Hahahaha. Can't wait to see you, A

  3. Duuude! E eats everything in sight and nurses a gazillion times a day and the only thing big on her is her head. Her weight's never gone ove the ten percent and is currently not even on the chart. If only she and J could split the difference in head sizes! Also, I giggled at you description of Daniel as a pinhead. Rough!

  4. Those charts are ridiculous, I've decided. I also just heard from my aunt that she recently had to wear a child-sized helmet on a rafting trip, so J is getting from both sides of the family.