Toddler Drawing Vortex of Grief

Everyone who lives, will at some point experience grief.  The loss of a pet, a friend moving a way, a hard diagnoses, losing grandparents, and the list goes on.  Part of living, is hard things.  There's no way around it.  And, by the time people are early adults, most are familiar with the concept of the five stages of grief.  It starts with denial, and ends with acceptance.  We view ourselves walking through each stage, and when we finally land at acceptance, it's this euphoric moment of peace where we are likely teleported to a peaceful tropical place for a few minutes, arms wide open, head tilted towards the sun, smiling and drinking in our arrival.

It's a lie.  The five stages of grief are real.  The woman that studied them, the research, and so on, all very real.  But, the things you know about it, not so much.  The most important thing to know about this is that these stages weren't researched on the people left behind.  The research was done on people with terminal illnesses.  The stages of grief are true for those who are dying.  ( In case you think I'm making this up, or aren't sure you buy what I'm selling, here's an article about it).

For so many people, grief looks much different.  It's much closer to this picture my son drew for me.

 

 

There are lots of colors.  Some lines that are mostly straight, but a whole lot of curves.  Some dots.  Somehow something sparkly got on the paper.  And, he says it's a picture of him and I, and it's very happy so I just nod my head as if that makes any sense with what I'm actually seeing.
This is how grief looks for me.  Especially when it comes to my childrens' diagnoses.  There are days where I feel like I've fully accepted things, and we're rolling with the punches.  Then three days later, I'm in my head, magically changing time so that I somehow prevent little getting sick and spending months in the hospital.  We avoid all foods that have nothing to do with my big's tumor, but none the less, I prevent it.   Or, I magically eat and drink all the right things and tiny is born without any congenital defects.  Do I have any idea if his defects were caused by anything I did or didn't do?  Not the point.  I'm in the toddler drawing vortex of grief, and today I'm living in denial, thank you very much.  Tomorrow I'll probably do some bargaining by way of yelling at God. And, in two weeks, you'll see me and I'll tell you that everything is great, things are going smoothly, and none of this stuff even phases me anymore. 

Grief for those of us still here, living the day in and day out, is messy.  It's complicated.  And, its filled with a toddler drawing of the grief stages.  I hope you all are enjoying your time in the vortex as much as I am!



Posing.

These are a few pictures from our vacation that I love.  Playing in the sand. Kite flying.  Wearing her puddle jumper and goggles despite the fact that she never went anywhere deep enough to need either in the ocean.  They're real.  They make me smile as I remember how fun it was.  How relaxing it felt.

While we were there one night, a family arrived at the beach.  All of them were wearing nice clothes. The mother walked into the water, and started posing, as the father took pictures with his phone, while giving instructions of how to turn to get her hair to flow more, and her chin in just the right position. I continued to play with Abigail while taking in the family.  They did rehearsed videos of walking and holding hands, acting surprised when a shell was given, and numerous takes of each person to get just the right angle and picture.  All on cell phones-so they weren't professional pictures.  I have no idea what their reason was.  Nor, am I saying that there may not have been a legitimate reason to do this.  It just struck me as intriguing as I watched all of the other families capturing pictures as their children ran into the ocean with boogie boards, built sand castles, and looked for shells and creatures on the beach.  I couldn't figure out why they would need to work so hard to capture perfect pictures when the beach is an amazing way to make perfect memories.  The whole thing has stuck with me.

The past weeks have been filled with appointments.  Mostly for Tiny.  Although, Big's MRI and oncology follow up for her glioma was in there as well.  Overall the appointments weren't horrible.  But, we've been bombarded with information.  Some suspected.  Some a complete surprise.  And, as we officially started the process of genetic testing for Tiny today, I recalled all of the times people have said, 'well, he looks normal.' 
My thoughts skipped to the church we belong to.  It's full of people who are a hot mess (spoiler alert, all churches are).  But, they're all so willing to share their mess.  It's a beautiful image of what the body of Christ is to be.  So many places, everyone looks the same.  They talk the same.  They pepper their language with how great God is.  All the time. 
But, the body isn't made up of parts that have it all together.  It's made up of my daughter with an extra chromosome who uses a wheelchair.  It's made of people who have been addicted.  People who have had abortions.  People who hate others.  People who need glasses to see clearly.  When all those parts connect, and work together, it's just a big jumble of imperfect.  There are hard conversations about forgetting to make things accessible for people who use wheelchairs.  There are sometimes hurtful things said to one another.  Everyone shares in the mess, the same way our physical bodies sometimes have parts that don't work well with others. 
There are other places like ours.  I'm sure of it.  There are also lots of places that look like the family at the beach.  The ones who say, 'well he looks normal.'  As if saying, 'I know we are all imperfect.  But, at least we can pass for having it all together.'  It's a badge.  Only post the great pictures.  The uplifting stories.  If you share something hard in your life, make sure to follow it with, 'but, I know that God is good.'

But, we want so badly to look normal.  Churches.  Families.  Individuals.  We pose.  We take the same picture adjusting the angle over and over until we have the ones to post that looks just right.

The truth, we're all broken.  When we go to the beach, we get sand in our bathing suits.  And, if you live here for long, you are going to experience hard things that make you question things about faith, and God, and those around you.  You're going to realize that the people who try the hardest to look 'normal' are just as broken as the one who is noticeably a mess.

We're a mess.  Our beach pictures.  Our home.  Our children's chromosomes.  Our faith.  And, if sharing our journey, honestly, helps one other person be brave, it's worth it.  I have found it's much more fun to just enjoy the beach than to dress up and pose.  Sure, there's more sand, and possible sunburn.  But, the memories are pretty amazing.
 

words. dna. anxiety.

the last post I vaguely alluded to it.  this one may not be any more specific.  we'll share more when we know more, and when we're ready.

first of all, asher is a happy, healthy, almost ten month old boy. 
but, he's also a very delayed little boy.  with more going on.  and, we haven't talked to many people about it.  for lots of reasons.  he was early. he was small.  even with putting those in the equation, things just don't add up.
so when he wakes at four a.m. to eat, for the third time that night, I nurse him, and lay there wide awake, going over every symptom, over and over and over.  I diagnose him, then undiagnose him.  I remind myself that there are millions of disorders I know nothings about.  I tell myself to sleep.  I take a deep breath and unclench my jaw.  I come downstairs and fall asleep to a television show because it makes my brain stop the cycle. 
but, then when daylight comes, i'm exhausted. and grumpy.  and not the best mom to any of my kids.  and over and over throughout the day I have to resist the urge to lay down on the couch and let the anxiety swallow me.  I want to scream, 'I can't do this.  I'm at capacity.  I can't take anything else.'

but, I make it through the day.  and the next.  and I whisper to myself, 'you can do hard things, andrea.'  I laugh.  I read books.  I sing.  I dance.  I go for a bike ride with big.  I cook meals. I apologize a million times for losing my temper, for not paying attention, and for my general disdain towards all living beings I interact with each day.

and last night, I did his dream feed, and then held him for just a few more minutes.  I rocked him as he slept, and prayed over him.  I don't have any great words to pray right now.  I don't even know what to ask for.  so I just tell Him things like, 'this is really hard' and 'for the love, please let me get a solid chunk of sleep tonight.'  And I looked at my son, and it occurred to me that every cell in his body, every copy of dna, every chromosome, God knew exactly what they look like.  He knew where mutations might have happened.  He knew the exact time they took place.  He knows what the diagnoses is going to be.
and for the first time in weeks, it felt peaceful to me.  it didn't change things right now.  but, it was comforting to think of God knowing. To picture Him sort of standing over the geneticist when they look through his blood sample trying to find the mutations. 

Tuesday is the beginning of this whole process for us.  we will see a specialist.  we will list all of our worries.  and we will begin looking for answers.  a diagnoses is just a word, in reality.  it doesn't change who our son is.  it can give us more information about him, about his needs.  about his future.  but, he will continue to be the same little boy he was the day before we have an answer.

drowning.

i'm swimming.

most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


 

but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

...as 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.

broken.

most of you who read this blog probably know, or have figured out that i'm a Christian.  with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking.  some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs.  i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little.  and big's disabilities are far less obvious.  however, I wanted to share a story.  I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.

a few weeks ago I was at church.  shilo had been in her gait trainer during music dancing a little, and I had just taken her out.  when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo.  I had never talked to this man before, but knew a little bit of who he was.  I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all.  the whole thing lasted only a few moments, and I don't even remember what he specifically prayed.  I do know that it wasn't for her to be healed.  and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking.  I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.

I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard.  but, there are also hard things about the disorders that are obvious.  many people tell me they are so sorry when they see that shilo has Ds.  they see her as broken.  as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next.  I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too.  but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level.  her almond shaped eyes give her away.

my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken.  the anger I struggle with.  the fact that I often don't sleep well.  my anxiety.  oh my word the anxiety.    there are so many things about me that aren't up to par with most of the rest of the world.  but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in.  my goal, is for the world to see her as whole.  complete.  no more broken than any of the rest of us.  most days, my experience is that she's less broken.  she is content.  she is joyful.  she works hard.  she is determined.  she is not easily swayed by others reactions.  she is forgiving.  she loves big.