5 August 2015

It's Been a Year!!!

It's been quite a year!!
Tomorrow it will be Stan's 1st birthday. I can hardly believe it.
I have been very absent from this blog, and , well, from a lot of my old life actually! It's not that I didn't want to, or couldn't get the time.. it's simply that I couldn't fit it in my head

I feel like I'm coming back to me now... and the fog is lifting! 
Stan is now being fed through a mic key button, directly into his tummy, and is FINALLY putting on weight.
And I am happy. So happy. We all are. We are LOVING him so much. 

And this story is basically a reflection on how it all went.

I have been comforted and inspired by the many stories of families adjusting to a post-birth diagnosis of down syndrome. A lot of them feel like they could have been written by me. It seems that the experience of adjustment holds similarities and involves a process, much like the grieving process, I believe. It sounds grim but for me, and seemingly a lot of others, it's necessary to get through it...

I felt compelled, all of a sudden, to add my story to the blogosphere. It's not what I was planning on doing, and I've never written a birth story or anything on here before, but, like I say, it feels like something I need to do.
Feel free to read it or not. And this is not going to be what I always do - blogging specifically about DS. It's just what's in my world right now. It's going to be an interesting and special aspect of our life from now on, but it is not all that's in it. And soon it will just be portrayed as our 'normal'. Which is what it is.
This blog usually deals with much more trivial, shallow matters! And that's how I like it. It's escapism and hedonism amidst my hectic life.
And it's how I avoid doing housework.

(a surprise diagnosis)

I knew something was different in this pregnancy. Just knew it. I told everyone. This baby didn't do what my other boy babies did in utero. He was listless and calm and, happily, didn't make me sick AT ALL. And with my other boys I was on the couch for 4 months literally. Having found out he was a boy I was confused by this.

I couldn't wait to hold him. I wanted to snuggle him under my chin. I wanted to breastfeed a hungry, earnest, button-nosed newborn again. It was my sixth time. I would know exactly what to do. I would soak it up. I would relish every moment, knowing it was my last time.  I was dreaming of another little guy, and watching him join into our big noisy family and grow up clever and kind, or crazy and cool, just like his siblings. He would explore the world and develop into a happy and strong person, who could be whatever he wanted to be.

The last photo of Stanley on the inside..
The morning of his birth. Bags all packed and ready to go.

When he came out, by caesaerian section (because it was assumed he's be as big/bigger than my previous babies who were enormous), he was nowhere near as big as the others. And there was no obvious reason for this... He looked the same as the others, but his face features were smaller and his hands were so tiny. He was screaming, as on the way out he got a big scratch down his face and body from the hook that held my stomach open. ( I know. Horrible.) so his face was screwed up and I didn't really get a good look at him for a while.

YOu can see the scratch on the side of his head and down his tummy. I'm smiling, but my eyes show how weird I was feeling.

But I remember how he felt in that first hour. They put him on my chest. (That's the photo above) But he had to be molded into a position that fitted, and even that didn't feel like the right spot. He didn't seem to blend into me like my other babies did. Usually my baby and I become one. We stay like that for about 4 months.. Stan didn't wriggle and hunt for my boob. It was weird. It felt odd. And I kept noticing all the small things that set him apart from the other kids. The teeny tiny pinky fingers that stuck up differently. ("JOhn look at his tiny fingers! Do they look odd to you?") I remember saying to my Dad on the phone that he looks the same, but somehow different to the others.

Four of his adoring siblings meeting him for the first time.  They were so excited to meet their newest baby.

I was in the post-natal ward with my new little bundle. The kids had been up to visit. John had taken them home. My mother and father-in-law came to see him. They loved him and left. There had been a couple of weird 'dusky spells'when he went purple and stopped breathing - during or after a feed (which was via bottle - a first EVER for me) So I was feeling all wasn't quite right. I didn't have the blissed out i'm-just-soaking-up-my-baby feeling .  There was a little baby with me, and he didn't want to feed. But he wasn't crying, and none of it felt right. 

There were 2 midwives in my room., and Stan lay in a little bassinet next to my bed. I looked at him, and for the first time our eyes properly locked together.

That's when I saw it. His eyes were wide open and he stared at me intently.
In hindsight, it felt like he was looking at me, imploring me to notice, and asking me if it was OK and if I would still love him anyway..
It breaks my heart when I remember that look.

But what I saw at the time was Down SYndrome. I saw it, 100%. Flashing lights.
"OMG he has Downs." That's what I said out loud.
The midwives came over and checked him out.
"Do you think?" There was the sandal toes. There was the single Palmers Crease. (this had been pointed out to us earlier on, but nothing has been thought of it) And of course there were the eyes.

One of our many hospital stays. 
He went purple and stopped breathing properly a few times not long after that. He was taken down to NICU where they looked after him. He was fed formula . This is the first time in 6 babies that that has happened. Those that know me know how much I am 'ínto' breastfeeding, for so many reasons.. So even that made me cry so badly. It was a big deal. And I was baby-less and in shock.

They say that this shock is sometimes like losing the baby you thought you were having, and you grieve, then get to meet a new type of baby that has arrived. You have to forget all your previous expectations and ideas.


I wanted everything to go away. Maybe the world to stop for a while till I'd worked out what to do. I had to work out how to tell people, who to tell.
It's hard to know what to say. I didn't want people to be  put in that situation. Do they congratulate me? Or say "Oh no!". Do they come and visit him? Do they send a text? Or ring? Do they say anything to my kids? What do they say to them?
 (I made the decision to send a message via facebook post. It stated that we were filled with different emotions, and that we loved our guy.) It took me a few days to get to doing that. I was in turmoil. I was up and down like a yo-yo in my head. I could cry in a heartbeat. Great buckets. I spent that whole first week teetering on the edge of a howling attack. A guteral heart wrenching howling session that I wanted no-one else to hear!
 I was away from my baby and I didn't know what my baby was like.
 What he was going to be like. 
What LIFE was going to look like in a year, 5 years 20 years, 40 years for our family.
How would his siblings be affected? 
Could I handle this? 
Why did we need this in our already busy lives? 
We were too old for this, me and John. 
And how could I do this without my Mum? (I cry about that after I had all my babies, but this one more so..)

Thank goodness I had an ensuite in the hospital I spent many hours in that week just crying uncontrollably. For one - post-partum hormones. ANother thing - I had just had a baby, but i didn't have a baby. He was in the nicu. I like to mother my babies in the natural, earthy way of "attachment parenting''.. that's a way of saying I hold them close. For as long as they want to. We have them close to us in bed. I feed them when they want feeding. I carry them next to my body in a sling. I felt heart broken, and so many other things.

Not long before graduating from NICU.
Trying to get aour heads around 'the new normal' and smiling through the weirdness!!

The Mummy-ing trip is so different this time. And I used to cry coz of that. There was grief attached to that. I felt more often like a nurse than I did a mummy. And I HATED that.  But I love him. SO BADLY. He is my cute little funny guy with his fluffy mohawk and his brown AND blue eyes. ANd his little hands that try and put things in his mouth, but miss! 

He's doing things, in his own time. We have had lots of ups and downs.. and things are going well now, as we approach his first birthday.   I wish for him all the lioness mummy wishes I can think of. I anticipate the more interesting and colourful life adventure we will have with him by our side.

I try not to forecast into the future too much. (we learnt that very early on.) It's a freaky thing. But we will face challenges head on, and we will lap up the future fun we will have.I feel like he is love in its purest form. He is so undemanding and tolerant. He has a calmness that a lot of people notice. A peaceful wairua (spirit) that my other babies didn't have.

The outpouring of support has been mind-blowingly overwhelming. My family has been amazing. AMAZING. My midwife and friend -I couldn't have coped without her.  My friends - INCREDIBLE! People dropped meals off, groceries, baking, money, cards and gifts, did washing, took kids, minded STan in the hospital while I came home, minded kids at home while John came to the hospital... etc. John's employer has been so kind, and so has all the medical interactions we have had. WE have even been given a caregiver for Stan daily while I get the kids ready for school, and a cleaner twice a week! Amazing. A group of staff at the kids'school made us meals every Wednesday for the whole term. A group of friends and family got together and bought us a new washing machine. A washing machine!! I think of them every time I use it. i could never thank them enough.  We have been thankful, so thankful for all that. 
We got to experience the best side of people through this, and we still do. Amazing messages from so many different fabulous people, with advice and offering support and encouragement. They made such a difference.
There are support groups. Online support groups as well. Medical input regularly. Ongoing free healthcare. We are lucky for that here in NZ.
JOHN has been amazing. Incredible. He is a total rock. And he totally rocks.

This whole thing has made us reconsider what 'perfect 'actually means. Perfect? I don't think a baby with Down Syndrome is what people mean when they say ''Perfect". But it doesn't really matter. Stan has a major difference obviously, and life will therefore be different with him. But also there will be plenty of similarities. We can already see what an amazing little guy he is and what he adds to our family. He is the most adorable little dude. EASY to look after. Rarely cries. Lie him down and he goes to sleep without a fuss (a new experience for us!!) He wakes up in the morning chatting and raspberrying. Loves his siblings probably more than they love him. And that's A LOT!!!

When he had a naso-gastric tube (for 8 months) It was horrific on his skin. Had to change nostrils every day or two to give his skin and his nostrils a break.

I don't know what will happen. This is our story with Stan so far. We are learning all the time. We are loving him. We are doing our best. We are happy.

Now that he's turning one, we are going to have a huge party. We will invite everyone who has helped us, and even everyone who offered to help... and that's a LOT of people! Also, I feel like we didn't celebrate his birth properly. So we will celebrate.
 We will C E L E B R A T E this amazing, precious little man. We marvel at his fortitude and we thank our lucky stars he chose us!!