One day.

Tonight, a little boy laid his head on my shoulder, clinging to his blanket, and I sang our song to him.  Baby Mine, in case you're wondering.  I kissed him over and over and put him to bed.  He would've let me hold him like that until he fell asleep.  I would've liked to have stayed there willing tomorrow to not come. 

It seems in the fight to be heard, to have things recognized, and for doctors to affirm things, we have reached the pinnacle.  Tomorrow, we sit down with a geneticist and go over all the things.  In reality, it's an appointment that sucks for the simple fact that the whole focus is on all of the things that are wrong.  Not only the things you know, but they start pointing out the way the ears rotate, and before you know it, you're certain that your kid doesn't have a single body part that came out right.
But, it also means my fight finally landed us where I knew we needed to be.  And, I want nothing more than to move back and be wrong.  To be the crazy mom that so many suspected me of being. 

Tonight, I sit here wondering how we ended up in this place.  It seems a little more like the stories you read in a magazine, where despite all the hardships, it ends super upbeat, with a picture of the family making cookies together and laughing in the kitchen. 
But, we live in the next part, where you fade out, everyone loses their plastic smiles, sigh with relief, and get back to life.  The kind where you accidently give your son, your daughter's thyroid meds and call poison control.  Then, you wonder, how God saw you as the person fit to be the parent of three kids with special needs because you can't even give the right kid the right medicine.
Sometimes, right before big hard things, like surgeries, testing, or appointments where I think we might get bad news, I fantasize that we run off to a tropical island together, and live worry free. No doctors.  No therapies.  And, certainly no diagnoses.  Then my stupid brain goes, 'but if you didn't go to the doctor, Shilo would die because she needs seizure meds and thyroid meds.'  Not even my brain will let me be irresponsible for a few minutes.

The big hard truth of this summer is I had hopes of doing all the fun things with Abigail since she goes to a school now.  But, thus far, Shilo has had surgery, we've had tons of appointments, and therapies, and Asher has had multiple test.  We have scheduled his spinal cord surgery for August.  And, I'm trying to squeeze all of our big summer bucket list items into the last two weeks.

Tomorrow, I'll put on my brave girl face.  I'll ask all the questions, and use all the big fancy medical words so everyone knows that I know what I'm talking about.  And, I'll pretend like I expected whatever it is that he tells us.  I'll nurse Asher, we'll get in the car to go home, and he'll fall asleep.  I'll cry.  Jason will hold my hand and say, 'how you doing, mama?'  Then we'll pick up our other kids, and get back to life. 
At bedtime, my little boy will lay his head on my shoulder while he clings to his blanket.  I'll sing him our song, and will the day not to end.  I'll lay him down, and he'll fall asleep.  It will be as if nothing changed, and everything changed, in one day.

Three for three.

When you've spent much time around the world of special needs, you learn a few things.  One of them is, people don't tend to have lots of random things going on, and none of them be connected.  There's usually an overarching diagnoses.  A genetic disorder.  Something.
So with each new thing that has come up with tiny, I have known, the day was coming when we would get our third diagnoses.  A couple of months ago, after tons of hours of researching, and reading medical journals, I came to the conclusion of what I thought it was. 
I mentioned it at our ortho appointment, and he sort of agreed he fit the criteria, but wasn't interested in diagnosing him.  It was frustrating for me because I want answers at this point.  It helps to know which way to go.  It alleviates fears of bigger things.  It makes state insurance for kids with special needs easier. 

Yesterday morning we made our second trip to the developmental pediatrician.  I made the appointment for stupid early in the morning so we could see the actual doctor.  Then, I showed up, and somehow they had made the appointment with a nurse practitioner.  I'm not a great person when sleep deprived, and I nearly fell apart.
It really turned out to be the best thing.  The n.p. we saw had seen Abigail five or so years ago.  She remembered us.  I listed our 'things we have noticed' and she immediately said, 'sounds like we should see a geneticist.'  I asked at our first appointment six months ago.  I didn't even have to ask this time.

There was lots more to it.  But, I won't wade you through all of that.  We have a diagnosis.  It will be confirmed with a geneticist.  It is what I thought it was going to be.  And, it was nice to put all of the pieces together.

So Asher's list of medical junk:  single umbilical artery, vertebrae anomalies causing congenital scoliosis, lipoma at the base of the spinal cord, genitourinary defect, hydronephrosis (this has already resolved for him, but is still included), congenital heart defect (it is very small and doesn't cause any issues), shoulder girdle weakness, clinodactyly in a couple of fingers and toes, and thumbs that tuck under.  It's possible that after a little more upcoming testing there may be more added to the list, but these are the knowns for now.

Asher has what is called VACTERL association.  It is not a genetic disorder.  It is a group of congenital defects that often occur together.  You only have to have three letters for diagnoses.  There are some other defects that can happen with it, but aren't part of the diagnostic criteria.
V-vertebrae anomalies
A-anal atresia
C-cardiac
TE-trachea-esophageal fistula
R-renal
L-limb deformities

Asher has V,C,R, and L.  Sometimes there is an S on the end, that isn't part of the diagnoses, but stands for single umbilical artery.  The genitourinary defects are sometimes linked with the A, but also not part of the actual diagnoses criteria.  And, the lipoma also isn't uncommon with all of it, but not part of the diagnostic criteria.
We will see a geneticist because sometimes there are genetic disorders with lots of these things, and they'll want to make sure nothing is being missed.  It's possible that the diagnoses could change, but it's unlikely at this point. 

Even with all of that, he is doing great.  He's a very active almost fourteen month old. He's trying to stand on his own, and has taken a few steps.  He love blueberries and oranges, black beans, and olives.  He has started to give lots of hugs and kisses voluntarily.  He smiles at everyone.  Our lives are so much better with him in them. 

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.