Sunday, September 28, 2014

skills, suckers, and being defined.

this is our youngest daughter, shilo.  she is two, almost three.  she has one of the best smiles in the world.  she has trisomy 21, otherwise known as Down syndrome.
she can crawl (fast), pull up, and walk (run) in her gait trainer, and loves music and dancing.

a lot of the world sees her and can't see anything besides those almond shaped eyes that lets them know that she has Down syndrome.  there are lots of stereotypes that come with that:  always happy, doesn't understand what's going on around her, easy going, compliant, and the list goes on.
shilo's personality is pretty easy going.  she is an overall happy kid.  but anyone who spends much time with her will quickly realize something, shilo is NOT Down syndrome.  she is a two year old. 

here is a list of things that shilo did today that are pretty typical for her:
-threw food on the floor at breakfast
-wiped yogurt and banana in her hair
-got every toy she could reach, out
-attempted to take her dress off as i put it on her
-threw her shoes while i was putting her socks on, then took her socks off while i was getting her shoes again
-turned around and stood up in her car seat while i tried to buckle her in
-walked to the nursery door and signed, 'play' over and over until it was time to go to nursery
-when i picked her up, the mom who was working nursery told me that she was the unsuspecting food thief: she crawled around stealing everyone else's cheerios
-attempted to get into, and take things from a stranger's purse
-threw food on the floor during lunch
-tried taking a chip out of an adults hand while they were talking to me
-grabbed a friend's boob while she was talking to  me
-refused her snack because she wanted French fries
-dumped trash all over
-ripped her bib off and threw it

i'm assuming there are some other moms of two year olds who can relate to this.  and, i'm betting, that they don't all have kids with an extra chromosome.  it turns out that her Down syndrome doesn't define her.  her personality isn't shaped by that chromosome.  she is an individual, who is capable of obeying, and disobeying.  being happy, or sad.  and if you think she doesn't understand you, she will figure it out quickly.  that sweet smile up there with a sideways head tilt is the go to move whenever she does something she knows she shouldn't.  she has skills, and she will play you for the sucker you are, if you underestimate her.

Wednesday, September 24, 2014

discovering grief.

a little over six years ago I became a mother for the first time.  I watched an amazing woman give birth to my oldest daughter.  I fell in love.  instant and deep. 
almost three years ago I became a mother for the second time.  I don't even know what all emotions I felt because it was a whirlwind that when remembered, seems a little like a fuzzy version of hell.  surgery, home, hospital stay, home, hospital stay, surgery, home, surgery again, home, seizures, hospital stay, home.  you get the point.  and to be honest, home wasn't any easier than the hospital most of the time.  lots of puking.  exhaustion form getting up every three hours to give meds and do feeds through a tube.  it was hard.
as we prepare for the arrival of number three, I have been overwhelmed with a rush of emotions I didn't know were lurking below the surface.  I have grieved the fact that I never got to see an ultrasound picture of shilo (I have some of both Abigail and our little guy due in January).  I grieve not being there when she was born, or the first few days of her life.  her family missed her first few days of life.
and then, I feel like her whole first year was missed.  not because I wasn't there, but because it was spent in survival mode.  we were caregivers.  we didn't give bottles, and warm baths, and snuggles.  we didn't comfort tears, or help our daughter learn to sleep at night time.  we gave meds, and sat in waiting rooms, and wondered if our lives would ever be the same.  we never got to experience shilo as a 'baby.'  I have very few memories from her first year of life, likely because I tried so hard to forget.

and now, we prepare for another little.  a boy.  and I'm not even sure what having a baby looks like anymore.  i'm petrified of germs, and am considering not letting anyone near him for the whole first year (this might be a little bit of an exaggeration).  I have no idea what it's like to have a kid without a genetic disorder, and doctor appointments, and so I just prepare for another diagnoses.
perhaps this all sounds a little crazy.  I can't say that between the last six years of our lives, and pregnancy hormones, that I might not be just a little over the edge when it comes to my thinking being rational or sane.
at the same time, I've learned that when confronted with grief, it's often best to put on your boots, and wade into it.  splash around a little.  get a feel for what all is around, and make your way to the other side.  you can likely find a bridge, or a boat, or even a path around.  and, you are welcome to try that.  but, you'll find yourself right back there, at the edge, staring into the deep dark pain of it all, and wondering how you ended up back in that same spot.
so i'm some where in the mucky waters of pain, trying to figure out how to look forward to our upcoming life changes without fear.  I am hoping that as the day of his arrival draws nearer, the other side will come into view, and we will get to meet this child with nothing but exuberant joy.
for now, if you see me, and say something about how excited I must be, don't be alarmed if my response seems less than.  I am thankful for this child.  his life.  what he will add to our family.  it's just that this whole experience is being filtered through past.

Tuesday, September 9, 2014 long as the baby is healthy.

anyone who has ever been pregnant has had this conversation:
'do you know what you are having?'
'not yet?'
'do you want a boy or a girl?'
'it doesn't matter to me.'
'as long as it's healthy....'

the last line actually makes me cringe.  now, of course I don't want there to be something that causes my child to be unhealthy.  but, when I hear 'as long as it's healthy' it feels a little bit like I would accept either gender, but not if they had any sort of disorder, or birth defect, or whatever any of the other millions of things are that can go wrong in pregnancy.
in our house, we will be thankful that we have the opportunity to parent another child.  if it's a boy, well hooray for a whole new adventure.  if it's a girl, *sigh of relief* I already feel equipped to navigate this boat (plus I have lots of clothes).  if the baby is anything less than 100% healthy, we will be just as thankful for his or her life.
I know that when people say this, they mean well.  they are not being rude.  I'm not angry at them.  but, honestly, it still makes me feel like my other two girls are seen as less desirable.  too many of my friends have buried their children.  some of them gave birth to children who were born sleeping.  some of them only got to spend minutes or hours with their children.   and, if you ask them, most of them would tell you that they wouldn't have been upset about dealing with a disorder.  they just want their child.  not a boy.  not a girl.  not a healthy baby.  just their child.
as we near the time period when we would be able to find out what gender our baby will be, we do it knowing full well that we have not been given any sort of guarantees about this child, and the health of it.  neither of our daughter's genetic disorders were 'caused' by anything more than a sperm or egg that had a chromosome on it that was a little wonky. it was nothing that either of their parents did.  and, as a result, we have just as much of a chance of wonky chromosomes as their parents did. 
so, what do we want?  we want to get to parent this child.  but, we make no big plans about who he or she will be.  we will wait, and rejoice in the child we end up with.  boy.  girl.  typical.  just as weird as the rest of us.  we will love our third child.