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.
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.