it's the little things

i was just contacted by a mom whose son is four months old and has prader-willi. it just so happens, she lives relatively near me and i think that three of our therapists have been assigned to work with her son. it's been a couple weeks since the therapists passed along our information and urged her to contact me, and i'm sure she was just working up her nerve to do it.

about a month ago i was thinking about how i wished that i'd met a baby like sophie in those early days. to be able to see that she would wake up, that she could be smart and funny and social and could communicate in her own way- that would have done my heart good. the literature doesn't give parents much hope. in reality, however, the handful of children that i've met with this disorder are doing great. certainly, raising a child with pws is very different than raising a healthy child- and there are certain things that you have to be aware of- but it is not the end of the world that it is sometimes made out to be.

there was a thirty page paper that i read, written after a meeting of some of the world's leading experts in prader-willi syndrome, that really helped me. it had some very depressing information in it- like the fact that sophia cannot be expected to ever be independent in the world, that she cannot have babies due to expected birth defects, and that there are no known cases of people with pws ever getting married/having romantic relationships.

however, it also had information that gave me power. i learned language that garnished me respect from medical professionals. i could tell her eye doctor that i'd identified her strabismus (crossing eye) and that many children with pws have medical interventions (surgeries) to correct it. sophie had that surgery, and it really did help her and improve her vision. i am so glad we went ahead with it. i am prepared to speak with her orthopedist about the fact that it is clear to me that sophie suffers from scoliosis, and that i am open to discussing the options for correcting it.

all of those little things certainly do start making mountains out of molehills... but then, there are the little moments that make it all worth it. a couple of days ago, i picked sophie up off the floor and squeezed her before getting her ready for bed... and suddenly, she put her tiny arms around my neck and squeezed me back. i'd certainly noticed, holding my friend's healthy children, that they were more solid, and that they sort of clutched, or held on, in a way that sophie did not- but it had never dawned on me that sophie had never hugged me before. in that one moment, my heart swelled like i'd never experienced.

my daughter is strong enough, and coordinated enough, to hug me. i told that other mom that story to give her something to look forward to... to give her hope, because i know that is what that moment gave me. i never knew that such a little thing- a small squeeze- could fill my heart with so much hope.